"I feel like God hates me" she said. "And for the life of me I can't figure out why. I'm constantly helping people. I barely ever put myself first" she said. Those words have been tugging at my heart strings for the past 2 weeks. My heart breaks for her. All she wants is to have another baby. To be with child, to experience the miracle of life as she has experienced if before.
This is a hard one for people to understand. To ask why this desires of our hearts aren't being granted or to think that our prayers aren't being answered. Even as Christians, people still struggle with this. The question I often hear asked, even by family members, is "If God is so Good, then when did He let.... happen?" We could fill in the blanks with that one and the list would be never ending. I told my friend, that I referenced above, that I didn't have the answers for her but that I knew God isn't evil and He isn't the one causing her not to get pregnant. After thinking about it, searching my heart, discussions with others that I hold in high regard, consulting the word, I have come up with this answer for her, and for all of us. This is something that I have struggled with in regards to Denton and Quinton dying and Sophie having so many complications so it is a healing process for me as well. Sort of an acceptance.
In the beginning God created Adam and Eve. We all know the story of how Adam and Eve were in the garden and they were told they could have anything and everything in the garden to eat....except this one tree. They were told not to touch it or they would die.
Genesis 2:15-17
15 The Lord God took the man and put him in the Garden of Eden to work it and take care of it. 16 And the Lord God commanded the man, “You are free to eat from any tree in the garden; 17 but you must not eat from the tree of the knowledge of good and evil, for when you eat from it you will certainly die.”
Genesis also goes on to tell us that the serpent was more crafty then any of the animals the Lord had made and he came to Eve and told her she could be like God, to know good and evil, if she took from the tree. The devil tempted her and she fell to the pressure. The moment Eve took from the tree and shared with her husband is when sin entered in to the World. Before that God made everything perfect, without sin. He even made man in his OWN image. That means that man was NOT sinful when he was first created!
The moment we allowed sin to enter the world in the moment when we gave the devil, the serpent, dominion over the Earth. We allowed him in and decided to push God out. God didn't have the power to cause bad things even if that was His character because this was the devils land now. We invited him in to stay. If we know that the devil is the bad one, the evil one, the one who comes to lie, steal and kill, then why do we still blame God for all of our problems?
One "trend" that I have witnessed is that many people want to claim they don't believe in God, but the moment something goes wrong they blame Him! Did you know it takes more faith to be an atheist than to actually believe in God? An example of that is my brother. He claims that he doesn't believe God exists because if he did then why does He let all this bad stuff happen? That is the mindset many people have developed. I see people blaming God for the bad, but when something good happens they declare themselves "self made men", or "I did this all on my own. Just me. No one else." I don't see people praising God in the good times as much as I see them blaming him in the bad. We can't expect God to perform miracles in our lives if we are stagnate in our faith, or wavering in our faith. We can't expect God to perform a miracle in our life if we aren't spending the time seeking Him, asking Him, and truly believing that it will happen.
Four months ago Sophie had a heart doctor appointment. In the months leading up to that appointment I was truly convinced that Sophie would go in to the appointment and the doctor would be amazed because her heart was healed. That Dr. Butto would say that we didn't have to come back as often anymore because Sophie was fine. With every fiber I believed that this is what was going to transpire. When I spoke to Dan on the phone after he got out of the appointment I was devastated because that wasn't what took place. My heart was completely broken. I felt I had been let down by God and I didn't understand. I made the phone calls I needed to make and I was reminded during one of the calls that God isn't finished. That we have 4 more months to pray and believe that God is going to heal her. Four months was when Dr. Butto wanted to see Sophie again to discuss another heart cath. I wasn't accepting this to be truth. So, for the past four months people have been praying and believing that Sophie will NOT have to have this heart cath. We go back to the doctor on Friday.
I share all of this with you because I have felt before that God hated me too. That it isn't fair that I have had to walk to journey that I have with my children. We did everything right, we did everything we were supposed to. I am a good person. I believe God sent his son to die for me on the cross and I believe that if I were the only person in this world, that He would have sent Him just for me then. With that said, I still don't blame God. I blame the devil. I blame that piece of garbage because he is the one who has dominion over the earth. He is the one who we let him to cause harm, to kill and to destroy. He is the one who makes bad things happen to good people, NOT God. God's heartbreaks when our heart breaks. God is sad when I am sad. God also gives us free will. We are allowed to make choices in our lives that aren't necessarily good for us, but we still make them. Do we ever ask ourselves what we are doing wrong? That answer would be that we aren't drawing near enough to God.
I know this is a wordy post. If there is anything I want you to take away from this post it would be that we serve a God of love. God isn't the one who causes bad things to happen, but He is the one that is there waiting for us to come to Him. He will ALWAYS be there, no matter what. Just because we don't have what our hearts desire in this very moment, doesn't mean we won't ever get it. Don't blame God when things go wrong, rejoice in Him knowing that He will make beauty from ashes!
Monday, December 30, 2013
Thursday, November 14, 2013
"If I Could Write A Letter"
Monday night I was blessed sit in a room with the bravest men and women I have ever met. Moms and dads that are able to take their pain of losing a child and be transparent in the midst of strangers. Moms and dads who have taken their darkest days and turned them in to shining beacons of hope. As I was sitting there listening to and sharing with other families on our losses, I was able to learn quite a bit about what I should have done to help me through the grieving process. I believe that I did a lot of work to accomplish the healing that has taken place. I still hurt, I miss my sons ever single day, and there are times that I am really sad. Most days though are normal days going through the motions of life. Only those who has experienced such pain can experience the joy that comes in the morning! A woman that I consider a friend of mine shared a letter that she wrote to her family after the loss of her baby. I was amazed at her strength and that is what has prompted this post today. This may be 4.5 years too late, but this is what I wish I would have said to friends and family after the loss of Denton and Quinton.
Dear Friends and Family that I love so much. As you know the loss of Denton and Quinton has been extremely hard on me, on us. As we are trying to process everything I pray that you will be patient with us. Not only are we dealing with the loss of our two sons, we are also trying to help our older son grieve the loss of his mother at the same time. I guess what I am trying to say is that we have a lot on our plate right now and we need time. Time to grieve in the ways that we want and need to grieve, time to be selfish, time to avoid other people that are having babies, and time just for ourselves. Individually, as husband and wife, and as parents of a living son and parents of twins that died.
I want to take this opportunity to share with you how I am feeling and this may help you when you are dealing with me on a regular basis. First, I am not the same Ashley that I was on June 1st. June 1st changed my life when I was told I was not pregnant with one baby, but two and that one of them wasn't developing. Then June 2nd came, and it changed my life again. Never in a million years did I ever think that I was going to be asked to have an abortion, by a doctor at that! Never did I think that I was going to have to pick one baby over the other. Then June 7th came, and once again my life changed. My body decided that it was time to have my babies, although my babies weren't ready to be born. I felt like my life was over at the very moment my water broke and I knew Denton and Quinton were coming, no matter what. Then June 8th came and so did the boys. My boys were born and died on June 8th and part of me died right along with them. As you can see, my life was turned up side down within a week's time frame. As you can see, I didn't have a lot of time to process it during that week, so now I am asking that you grant me this time to process and grieve.
Along with time, I am asking that you be kind to us. Be kind with your words, your thoughts, and your expectations. You may be wondering what I am meaning by this, so here it goes. Remember, be kind! When I don't answer your phone call, it is because I really am not in the mood to talk to you. Not because I don't love you, but because I am hurting and I can't handle your wants and needs at this time. When I don't get excited that others are pregnant, please don't call me out on it because I physically, emotionally and mentally can't muster up that excitement. It just isn't possible, and honestly, I don't want to. When I run out of the room when a baby enters the room, don't be mad. Be kind! Remember that I should have two babies still inside my body and when I see someone with a baby, my heart breaks again. The pain I feel is the same pain I imagine William Wallace felt when his insides were being ripped out of his body little by little. When I am in a bad mood on Mondays, please know that June 1st and June 8th were both Mondays. I need you to be kind to me because I feel the world hasn't been, and either has God.
Please know that I am going to be moody. I am going to be sad. I am going to be pissed off. I am going to cry....a lot. I am going to do it at home, at the office, in public, in the middle of the night. I am probably a little depressed but don't assume I have to take medication to cope. Don't shy away from me because I can't control my emotions. Please, I ask this of you, if you are going to remember my sons first birthday, please remember their 4th and 5th as well. I need for you to remember them. Some of you were able to hold my babies in your arms, so you know they were here. They existed, they are a part of Dan and I. I need you to count them when you count how many grandchildren you have. Denton and Quinton mattered, they still matter!
I am not sharing all of this with you to upset anyone, or to make anyone uncomfortable. I am sharing with you because I am in a vulnerable state and the last thing I want to do is push anyone away. I don't want to alienate anyone purposely, but it may happen. I have already lost my sons, I don't want to lose you too.
Thank you for supporting Dan, Shane and I through this dark storm. As we navigate through the blistering winds that come and knock us off our feet, we are thankful that we will have you there to pick us up, because right now it takes everything I have to get out of bed in the morning. Who am I kidding, some times I don't get out until late morning! We love you and thank you for loving us.
This is the letter I wish I had the strength to write after my sons died. This explains truly how I felt at that time. I will be honest, relationships suffered. Friends didn't acknowledge the fact that my sons died. Family thought we were the ones causing pain to them. Maybe if I would have been brave enough in the beginning, none of that would have happened. I could have given each person that mattered to me a a map of every single move they should have made around me and I didn't. Not all relationships were strained, but some were. It happens. It is life. Death isn't easy for anyone, but the death of your child I believe is the absolute worst pain anyone could ever feel in their entire life. I felt that pain for a long time, but I wouldn't share it with anyone. Not even my husband at times. I felt my grief was so personal to me that I couldn't share it because no one would understand. I can stand here today and say with certainty that I am not in the same place I was 4.5 years ago. I have tackled the barricades head on to come out stronger on the other side. I have never been one to back down, but the day my children died, and the days that followed, I felt I had surrendered and was losing the fight. One day I woke up. I can't tell you what made me realize that I had to fight to get back to a health place, but I did it. I encourage anyone who needs to grieve, to do so. Give yourself permission. Write a letter to friends and family if needed. Typing this out now, was still healing. Don't wait if you don't have to!
Dear Friends and Family that I love so much. As you know the loss of Denton and Quinton has been extremely hard on me, on us. As we are trying to process everything I pray that you will be patient with us. Not only are we dealing with the loss of our two sons, we are also trying to help our older son grieve the loss of his mother at the same time. I guess what I am trying to say is that we have a lot on our plate right now and we need time. Time to grieve in the ways that we want and need to grieve, time to be selfish, time to avoid other people that are having babies, and time just for ourselves. Individually, as husband and wife, and as parents of a living son and parents of twins that died.
I want to take this opportunity to share with you how I am feeling and this may help you when you are dealing with me on a regular basis. First, I am not the same Ashley that I was on June 1st. June 1st changed my life when I was told I was not pregnant with one baby, but two and that one of them wasn't developing. Then June 2nd came, and it changed my life again. Never in a million years did I ever think that I was going to be asked to have an abortion, by a doctor at that! Never did I think that I was going to have to pick one baby over the other. Then June 7th came, and once again my life changed. My body decided that it was time to have my babies, although my babies weren't ready to be born. I felt like my life was over at the very moment my water broke and I knew Denton and Quinton were coming, no matter what. Then June 8th came and so did the boys. My boys were born and died on June 8th and part of me died right along with them. As you can see, my life was turned up side down within a week's time frame. As you can see, I didn't have a lot of time to process it during that week, so now I am asking that you grant me this time to process and grieve.
Along with time, I am asking that you be kind to us. Be kind with your words, your thoughts, and your expectations. You may be wondering what I am meaning by this, so here it goes. Remember, be kind! When I don't answer your phone call, it is because I really am not in the mood to talk to you. Not because I don't love you, but because I am hurting and I can't handle your wants and needs at this time. When I don't get excited that others are pregnant, please don't call me out on it because I physically, emotionally and mentally can't muster up that excitement. It just isn't possible, and honestly, I don't want to. When I run out of the room when a baby enters the room, don't be mad. Be kind! Remember that I should have two babies still inside my body and when I see someone with a baby, my heart breaks again. The pain I feel is the same pain I imagine William Wallace felt when his insides were being ripped out of his body little by little. When I am in a bad mood on Mondays, please know that June 1st and June 8th were both Mondays. I need you to be kind to me because I feel the world hasn't been, and either has God.
Please know that I am going to be moody. I am going to be sad. I am going to be pissed off. I am going to cry....a lot. I am going to do it at home, at the office, in public, in the middle of the night. I am probably a little depressed but don't assume I have to take medication to cope. Don't shy away from me because I can't control my emotions. Please, I ask this of you, if you are going to remember my sons first birthday, please remember their 4th and 5th as well. I need for you to remember them. Some of you were able to hold my babies in your arms, so you know they were here. They existed, they are a part of Dan and I. I need you to count them when you count how many grandchildren you have. Denton and Quinton mattered, they still matter!
I am not sharing all of this with you to upset anyone, or to make anyone uncomfortable. I am sharing with you because I am in a vulnerable state and the last thing I want to do is push anyone away. I don't want to alienate anyone purposely, but it may happen. I have already lost my sons, I don't want to lose you too.
Thank you for supporting Dan, Shane and I through this dark storm. As we navigate through the blistering winds that come and knock us off our feet, we are thankful that we will have you there to pick us up, because right now it takes everything I have to get out of bed in the morning. Who am I kidding, some times I don't get out until late morning! We love you and thank you for loving us.
This is the letter I wish I had the strength to write after my sons died. This explains truly how I felt at that time. I will be honest, relationships suffered. Friends didn't acknowledge the fact that my sons died. Family thought we were the ones causing pain to them. Maybe if I would have been brave enough in the beginning, none of that would have happened. I could have given each person that mattered to me a a map of every single move they should have made around me and I didn't. Not all relationships were strained, but some were. It happens. It is life. Death isn't easy for anyone, but the death of your child I believe is the absolute worst pain anyone could ever feel in their entire life. I felt that pain for a long time, but I wouldn't share it with anyone. Not even my husband at times. I felt my grief was so personal to me that I couldn't share it because no one would understand. I can stand here today and say with certainty that I am not in the same place I was 4.5 years ago. I have tackled the barricades head on to come out stronger on the other side. I have never been one to back down, but the day my children died, and the days that followed, I felt I had surrendered and was losing the fight. One day I woke up. I can't tell you what made me realize that I had to fight to get back to a health place, but I did it. I encourage anyone who needs to grieve, to do so. Give yourself permission. Write a letter to friends and family if needed. Typing this out now, was still healing. Don't wait if you don't have to!
Monday, November 4, 2013
Watering the Flowers
A man (he can be Asian, Korean, Hispanic, Anglo, Black, whatever you prefer) went down to the river every single day to get water. He had 2 buckets. One bucket was shinny, beautiful, not a single imperfection on it. The other bucket was cracked, full of blemishes and leaked water. How can this bucket still be useful for the purpose of carrying water? One day while the man was getting his water he overheard the buckets talking to one another. The old, rusty leaking bucket was complaining because he didn't look like the shinny new bucket. The bucket didn't understand it's value. It was concerned that it didn't serve a purpose anymore because it wasn't as "good" as the other bucket. As the bickering continued between the two buckets the old man interrupted and begged the old bucket to see it's purpose. The man said "Do you see all of these beautiful flowers on your side that lead all the way up to the palace? Do you see that they are only on your side, and not the side of the other bucket?" The old bucket was speechless. The old man, saddened by the fact that the old bucket didn't feel valuable, pleaded with the old bucket. He told the bucket, "I only planted the flowers on your side because I knew you leaked water and every single day on our way back up to the palace, I knew you would be watering them. Can't you see how beautiful they are, because of you?"
Kids, the moral of this little parable, that was shared with me by a friend, reminds me of Sophie and how imperfectly perfect she truly is. From the outside Sophie looks perfect. She doesn't have a single blemish. Some of the physical characteristics, such as always smiling, wide set, deep eyes that she has because of MWS, are truly beautiful physical characteristics for her to have. From the outside, one wouldn't know that Sophie is incomplete on the inside. It is true, Sophie doesn't serve the same purpose as me. Her purpose in this life isn't to be "fruitful and multiply" by the standards God set for us. Her purpose isn't to go to work every single day and make a difference in the job she performs. Sophie's purpose is much bigger, much more spectacular!
Sophie is changing lives my friends. For those of you that have been blessed to be in the presence of Sophie, you can attest to the fact that she is truly a special little girl. Not special as in special needs, but special because God is using her to transform our lives EVERY. SINGLE. DAY. Even if you just know Sophie through my posts or my pictures, you can tell that Sophie is extraordinary. I get to wake up to a child who is up to shenanigans inside of her crib and when she is caught, she just smiles as if it wasn't her. I get to come home every single day to a child whose face lights up when she hears my voice and her eyes search the room to find me. I get to put to bed a feisty little princess who is fighting sleep, but not in the way you would think. She fights it with giggles, laughter, hitting her daddy because she wants to interact with him, all while she is rubbing her eyes because she physically needs to go to bed, but won't because she is too busy making memories for her mommy, daddy, and brother. Friends, that is my reality!
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It wasn't too long ago that I was the rusty old bucket. I was the one who was complaining that my daughter wasn't as good as my friends kids. I was the one that was complaining because in 5 months my daughter will be 3 and she still isn't walking or crawling, but my niece was walking before she turned a year old. Don't misinterpret what I am saying, I was overjoyed for my sister and BIL, that my niece was walking, but there was also jealousy inside that was eating away at me like maggots on a deteriorating piece of flesh. (Nice visual, you are welcome!) I wasn't looking at how beautiful Sophie truly is. Sophie is a miracle, no matter which way we look at it. How many of you have been told by friends that when they look at your child, they see Jesus? We have been told that countless times and it never gets old.
My Simply Complicated, isn't so simple, but it also isn't so complicated. I am beyond thankful for where we are today with Sophie. I am beyond thankful for the different surgeries that she has had to make her a healthy little girl. I am beyond thankful for her smiles, her laughter, her babbling sounds that sounds like she is saying mama, because it is a lot more than what I had anticipated back on January 2nd, 2012 when we received the diagnosis of MWS. Sure, Sophie is full of imperfections. I mean come on, she is missing a gene on her 2nd chromosome, she has a patch on her heart to close a hole that made her quality of life a lot less than what it is now, she has 6" less of a colon than she is supposed to, and a beautiful scar in the middle of her chest reminding me that I have so much to be thankful for. Sophie IS like the broken bucket because she is truly making this world a more beautiful place because God has used her imperfections to water the flowers!
**Thank you friend for sharing this story you heard with me this morning. I thank God for you!
Kids, the moral of this little parable, that was shared with me by a friend, reminds me of Sophie and how imperfectly perfect she truly is. From the outside Sophie looks perfect. She doesn't have a single blemish. Some of the physical characteristics, such as always smiling, wide set, deep eyes that she has because of MWS, are truly beautiful physical characteristics for her to have. From the outside, one wouldn't know that Sophie is incomplete on the inside. It is true, Sophie doesn't serve the same purpose as me. Her purpose in this life isn't to be "fruitful and multiply" by the standards God set for us. Her purpose isn't to go to work every single day and make a difference in the job she performs. Sophie's purpose is much bigger, much more spectacular!
Sophie is changing lives my friends. For those of you that have been blessed to be in the presence of Sophie, you can attest to the fact that she is truly a special little girl. Not special as in special needs, but special because God is using her to transform our lives EVERY. SINGLE. DAY. Even if you just know Sophie through my posts or my pictures, you can tell that Sophie is extraordinary. I get to wake up to a child who is up to shenanigans inside of her crib and when she is caught, she just smiles as if it wasn't her. I get to come home every single day to a child whose face lights up when she hears my voice and her eyes search the room to find me. I get to put to bed a feisty little princess who is fighting sleep, but not in the way you would think. She fights it with giggles, laughter, hitting her daddy because she wants to interact with him, all while she is rubbing her eyes because she physically needs to go to bed, but won't because she is too busy making memories for her mommy, daddy, and brother. Friends, that is my reality!
.JPG)
It wasn't too long ago that I was the rusty old bucket. I was the one who was complaining that my daughter wasn't as good as my friends kids. I was the one that was complaining because in 5 months my daughter will be 3 and she still isn't walking or crawling, but my niece was walking before she turned a year old. Don't misinterpret what I am saying, I was overjoyed for my sister and BIL, that my niece was walking, but there was also jealousy inside that was eating away at me like maggots on a deteriorating piece of flesh. (Nice visual, you are welcome!) I wasn't looking at how beautiful Sophie truly is. Sophie is a miracle, no matter which way we look at it. How many of you have been told by friends that when they look at your child, they see Jesus? We have been told that countless times and it never gets old.
My Simply Complicated, isn't so simple, but it also isn't so complicated. I am beyond thankful for where we are today with Sophie. I am beyond thankful for the different surgeries that she has had to make her a healthy little girl. I am beyond thankful for her smiles, her laughter, her babbling sounds that sounds like she is saying mama, because it is a lot more than what I had anticipated back on January 2nd, 2012 when we received the diagnosis of MWS. Sure, Sophie is full of imperfections. I mean come on, she is missing a gene on her 2nd chromosome, she has a patch on her heart to close a hole that made her quality of life a lot less than what it is now, she has 6" less of a colon than she is supposed to, and a beautiful scar in the middle of her chest reminding me that I have so much to be thankful for. Sophie IS like the broken bucket because she is truly making this world a more beautiful place because God has used her imperfections to water the flowers!
**Thank you friend for sharing this story you heard with me this morning. I thank God for you!
Friday, September 13, 2013
"Don't Stop Believing"
You know that moment when everything you have been praying for,
everything you have been expecting to happen doesn't happen? There is
such anticipation building up to that moment, and the anticipation seems
to be worse than the moment when everything you believed was going to
happen, doesn't happen. That is usually how the process goes for me. I
expect the worst to happen. I am not a pessimistic person, but if you
know everything that my family has endured in the last 4 years, you
would understand why I see things the way I see them. It isn't because I
want to, it is because I have been suckered punched repeatedly for the
last 4 years starting with the loss of my twins. This time was different
though. I didn't have any negative feelings or thoughts about Sophie's
appointment. I was expecting a miracle. I was asking God to heal my
daughter's heart fully and I just knew He was going to do it, but He
didn't.
Sophie had her 4 month check up at Dr. Butto's on Tuesday. He has been watching her left pulmonary artery for a year now. It has been a little narrow but he always gave us hope saying that she could grow out of it. Well, on Tuesday he told Dan that he will see her in 4 months and at that time he is going to want to schedule a procedure to get a better look. Let me interpret what he is saying here: "I want to do another heart cath so I can decide if a balloon procedure will work to open the artery, or if I have to result to worst case scenario and put a stent in, which I don't want to do because as Sophie grows the stent will have to be replaced."
Did your heart just sink? Mine sure did when Dan was telling me. We were headed to dinner and I was asking him how the appointment went. I honestly had such joy in my heart and voice when I was asking because I was expecting him to tell me that everything was perfect. That Sophie's artery didn't need any attention. Then it hit me. I won't say like a ton of bricks because it was more than that. The weight of his words totally crushed my heart. My breathing started to increase and I was fighting back tears because Shane was in the back seat and up until this point, we haven't shared any of this with him because we. I believed everything was going to turn out differently. The look in Shane's eyes hurt me almost just as much. I could see the worry in his eyes for his sister. I had to suck up what I was feeling and explain to Shane that everything was going to be ok, that this wasn't serious. All of it lies because I didn't know in that moment if I believed my own words. That is what it was, just words, empty words so I could take the fear away from my son that he had for his sister. The love he has for her is indescribable.
That night I sent a text to my mom, a friend of mine and my Pastor. I told them all what was going on. All three of them had expected different results as well. As best as they could they tried to encourage me and on the other end I had tears running down my face. As I was reading their words I just felt empty. I didn't feel as if their words held any value or any promise to them. I was choosing not to trust my God because I felt He had let me down.
The next day I called my dad because I wanted to share with him about the approval we had received for Sophie's bath seat....finally I might add. I was sharing that with him and then told him about the appointment. Again, I cried. I didn't know how to stop the tears. As my dad's voice cracked from him holding back his own tears, I felt comforted. I was comforted by my earthly father, but I still wasn't allowing myself to be comforted by my heavenly one. My dad told me to keep believing and to not give up. He knows better than that, he didn't help raise a quitter. Both of my parents raised me better than to quit....at anything worth fighting for. Sophie's healing is worth fighting for.
I ended the conversation with my dad to go inside to make dinner. As I am cooking he sends me a text telling me to check my email and to let him know what I thought. Curiosity always gets me and I just can't not check my email at that moment, even though I was busy. I opened my email to see my dad's email and the subject line simply read "Devotional". Not something I really wanted to be doing because I was still feeling let down by God. I opened the devotional anyways and this is what it said:
No, be encouraged today. Stay the course. Keep believing. You may be tired, discouraged and tempted to be frustrated, but don’t give up on your future. Stay on the high road. Our God is a faithful God. It may be taking a long time, but what He started He will finish in your life. Scripture says the eyes of the Lord search to and fro to find someone who will be faithful on His behalf. Be the person He finds faithful. Keep believing, keep praying, keep obeying and stay the course because He is leading you in the path of victory!
I sent my dad a text back asking him if it was the devotional that he had received for that day and he said yes. I was in disbelief. All of the abandonment that I had been feeling for the past 2 days disappeared. I chose to let it go and keep believing....again, that Sophie was going to be healed. I let the doubt that had crept in, creep back out and I chose to start fresh right there in my kitchen.
Pastor Joe said it best,"We will take that as an opportunity to pray specifically for that everyday for the next four months." I am asking all of you to join us in prayer, every single day for the next four months that Sophie's left pulmonary artery is going to be completely healed and there won't be a need for another heart cath. In Jesus name, Amen!
Sophie had her 4 month check up at Dr. Butto's on Tuesday. He has been watching her left pulmonary artery for a year now. It has been a little narrow but he always gave us hope saying that she could grow out of it. Well, on Tuesday he told Dan that he will see her in 4 months and at that time he is going to want to schedule a procedure to get a better look. Let me interpret what he is saying here: "I want to do another heart cath so I can decide if a balloon procedure will work to open the artery, or if I have to result to worst case scenario and put a stent in, which I don't want to do because as Sophie grows the stent will have to be replaced."
Did your heart just sink? Mine sure did when Dan was telling me. We were headed to dinner and I was asking him how the appointment went. I honestly had such joy in my heart and voice when I was asking because I was expecting him to tell me that everything was perfect. That Sophie's artery didn't need any attention. Then it hit me. I won't say like a ton of bricks because it was more than that. The weight of his words totally crushed my heart. My breathing started to increase and I was fighting back tears because Shane was in the back seat and up until this point, we haven't shared any of this with him because we. I believed everything was going to turn out differently. The look in Shane's eyes hurt me almost just as much. I could see the worry in his eyes for his sister. I had to suck up what I was feeling and explain to Shane that everything was going to be ok, that this wasn't serious. All of it lies because I didn't know in that moment if I believed my own words. That is what it was, just words, empty words so I could take the fear away from my son that he had for his sister. The love he has for her is indescribable.
That night I sent a text to my mom, a friend of mine and my Pastor. I told them all what was going on. All three of them had expected different results as well. As best as they could they tried to encourage me and on the other end I had tears running down my face. As I was reading their words I just felt empty. I didn't feel as if their words held any value or any promise to them. I was choosing not to trust my God because I felt He had let me down.
The next day I called my dad because I wanted to share with him about the approval we had received for Sophie's bath seat....finally I might add. I was sharing that with him and then told him about the appointment. Again, I cried. I didn't know how to stop the tears. As my dad's voice cracked from him holding back his own tears, I felt comforted. I was comforted by my earthly father, but I still wasn't allowing myself to be comforted by my heavenly one. My dad told me to keep believing and to not give up. He knows better than that, he didn't help raise a quitter. Both of my parents raised me better than to quit....at anything worth fighting for. Sophie's healing is worth fighting for.
I ended the conversation with my dad to go inside to make dinner. As I am cooking he sends me a text telling me to check my email and to let him know what I thought. Curiosity always gets me and I just can't not check my email at that moment, even though I was busy. I opened my email to see my dad's email and the subject line simply read "Devotional". Not something I really wanted to be doing because I was still feeling let down by God. I opened the devotional anyways and this is what it said:
Stay the Course
Today's Scripture:
Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, ‘This is the way; walk in it.’ Isaiah 30:21, NIV.
Today's Word:
God has put a promise inside each and every one of us. Oftentimes, we
have to go through the wilderness before we reach our promised land.
Oftentimes, like Joseph, we feel like we are in a pit long before we
ever see the palace. Maybe you’re in a season right now where you don’t
see anything happening. You think, “I’ve been praying and believing for a
year, five years, ten years. It’s never going to work out.”
No, be encouraged today. Stay the course. Keep believing. You may be tired, discouraged and tempted to be frustrated, but don’t give up on your future. Stay on the high road. Our God is a faithful God. It may be taking a long time, but what He started He will finish in your life. Scripture says the eyes of the Lord search to and fro to find someone who will be faithful on His behalf. Be the person He finds faithful. Keep believing, keep praying, keep obeying and stay the course because He is leading you in the path of victory!
Prayer for Today:
Father, thank You for leading and guiding me in paths of
righteousness for Your name’s sake. I choose to trust even when I don’t
understand. I choose to believe that You are working behind the scenes
for my good. I will stay the course knowing that You have blessing and
victory in store for me in Jesus’ name. Amen.I sent my dad a text back asking him if it was the devotional that he had received for that day and he said yes. I was in disbelief. All of the abandonment that I had been feeling for the past 2 days disappeared. I chose to let it go and keep believing....again, that Sophie was going to be healed. I let the doubt that had crept in, creep back out and I chose to start fresh right there in my kitchen.
Pastor Joe said it best,"We will take that as an opportunity to pray specifically for that everyday for the next four months." I am asking all of you to join us in prayer, every single day for the next four months that Sophie's left pulmonary artery is going to be completely healed and there won't be a need for another heart cath. In Jesus name, Amen!
Tuesday, July 16, 2013
Retard - By Definition
re·tard
[ri-tahrd, for 1–3, 5; ree-tahrd for 4] Show IPA
verb (used with object)
1.
to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.
verb (used without object)
2.
to be delayed.
: slow or limited in intellectual or emotional development or academic progress
Just wanted you all to be aware of what retard really means. It doesn't mean:
It doesn't mean stupid
It isn't a way to describe an object that doesn't do what you want it to do
It isn't a person whose ideas you don't agree with
It isn't some slang word that has no effect on someone
What it really is, by definition...My Daughter.
Think before you speak and make sure you aren't speaking to me or around me when you decide to use that word.
***I am not speaking to you directly, just those people who use it as part of their every day language.
I challenge all of you to make a difference as well and take the "retard" word out of their vocabulary. If offends you, tell them! Not stand by and let it happen.
Monday, June 10, 2013
Couldn't have written it better!
I can't take credit for this one at all. A dear friend of mine sent this to me and it made her think of Sophie and I. I just wanted to share.
To the Me of Ten Years Ago
You…yes you, holding that sweet baby girl in the plaid dress. Let’s chat.
You don’t know it yet, but that sweet baby girl has a secret. One that will slowly and not completely reveal itself over the next few years.
It’s going to break your heart. Repeatedly.
But I promise you, it will be okay.
No. Really.
Sure, you’ll need therapy. And you’ll get a bottle of Prozac with that therapy. It’ll help. It will help you crawl out of the big cloud of overwhelmedness you will feel for a year or so. But you won’t need them forever.
That baby girl’s going to keep you up at night – literally and figuratively. You will worry over her like no other child has made you worry. I’ll be honest, you’ll never get over that worry, but it won’t haunt you constantly.
One by one, you’re going to give up on the dreams you had for this baby girl. The ones of her going to school, going to college, what she could be as an adult. The furthest ones will fade first. For a while, you live in the moment. Eventually, you allow yourself to think a couple of years ahead tops. Oh, you will plan for her long-term, but in the most generic of ways. Inheritances. Guardians. You even ponder the idea of a group home. But mostly, you don’t think of those things. You just take it a few days at a time. It’s just easier that way.
You will meet all sorts of people because of this child, and their true selves will be revealed. You’ll learn that some people just suck, some people mean well but should keep their mouths shut, some people are kind but sometimes clueless to what you’re going through. But you’ll learn that most people, at heart, are good. This child will help restore your faith in mankind again, and again, and again, just in how they treat her.
You will spend the next nine years wondering how you ended up the parent of a special needs child. You kind of get used to it, but at the same time, you will never get used to it. It will be this feeling of constant surprise when you sit back and think about it. How did I get here? How did this happen?
No, you will never quite get used to it, no matter how much you do accept it.
You will learn to be a fighter. You will find strength you never realized you had and overcome your fear of confrontation. You do this because not doing this is not an option. That baby girl needs you to be this way. And you’re not about to let that girl down.
You will find that those three amazing kids you had before her? Are even more amazing than you could imagine. They will show compassion and understanding beyond their years which will make you proud.
But those three will have to put up with so much because of their sister. Hours in waiting rooms, stuff broken by her, my inability to multi-task and spread my attention to everyone evenly. Your heart will break for them, that at a young age, they will realize that they will someday inherit this sister. But once again, these three kids will amaze you, for they will never resent that little sister. Be annoyed by her? Oh sure. But in normal ways. Those three little children who would hover around Maura’s bassinet and announce every time she cried will continue to look out after her over the coming years. They will let you know that you’ve done at least one or two things right.
That little baby girl? Is going to work so very hard the next ten years to learn things. Slowly, but surely, she will learn things. I promise you, she will walk, she will get there. She will talk too – not great, but enough. Can’t promise you on the toilet training, but don’t give up, she should get there.
You can’t tell right now, but that baby girl’s brain? Is going to freak out on her. She will be diagnosed with epilepsy. It will freak you out at first. I promise, promise that it will be okay. It will not stop her from anything. In fact, you’ll find out that things will improve for her after the diagnosis and starting medication. It will quickly go from something scary to something to be oddly grateful for. And then it will just become something that you all will be able to live with. Yes, that thing that will be on top of your “Big Scary Things I Don’t Want My Child to Have” list will suddenly be not that scary.
I promise that.
Speaking of medical things, your days of never seeing the pediatrician because your kids are so dang healthy? Those are over. You will get frequent flyer miles at the doctor’s office. You will collect cards of all sorts of medical professionals. You will learn which blood lab does the best blood draws on children. You will be able to write things like “epicanthal folds” and “oxcarbazepine” without thinking. You will also know that as much as you’re dealing with, you’re grateful that is all you are dealing with. Because there could be more, it could be worse.
Your back is going to spasm out from carrying that child around so much. You’ll end up with tennis elbow from lifting her as a seven year old into her car seat. You will put on weight from stress eating. You will lose your mind a little.
It’ll be okay.
Your world will revolve around poop. Your friends may think you talk about it too much. They will have no idea just how much you could speak of it. Don’t worry though, you will discover a small group of other moms obsessed over bowel movements. And you will be able to over-share with them.
Your life is not going to go as you had vaguely planned it. It’s going to veer off in a new direction. People will link you to the heartwarming tale “Welcome to Holland”. You will hate it. That’s okay. You’re allowed to hate it.
You will find out that there are cliques even in the special needs community. So you’ll start your own damn support group. It’ll be called “Who wants to get coffee with me?” It will be great.
You will learn to view adults with special needs in a whole new light. You will see a man in his 50′s happily buying a coloring book and it will make you think of your daughter. You will not cry in the store, but later on, there will be some tears.
You will feel so very alone with this child at times. Sometimes, at home, at night, other times, in the middle of a crowd. You will feel a cold wave of loneliness that you’re certain no one else will ever really understand.
You will feel jealousy, of other people and their children who are developing normally. Of their seemingly placid lives that don’t involved fighting schools and doctor visits and poop.
Just remember, you were raised to not whine about things and deal. And you do. You will suck it up and deal with it as best you can. And you will do so with a smile on your face. Because crying is never an option.
Well, most of the time.
You will write and blog about this child, and her life. And in doing so, find a whole slew of people out there who say “Wow! I live this too!” and “Thank you for writing exactly how I feel!” Somehow, you will become a voice for others and you’ll realize that you’re completely inadequate when it comes to saying “thank you” and still are lousy at accepting compliments. Work on that, okay?
You will discover that while you never expected to be a special needs parent, you will end up a bit of an advocate for special needs children. You will wonder more than once how you ended up on top of a soapbox. Don’t worry, you’ll be okay up there.
You will learn that the guy you chose to marry ten years before? Good choice. That man will be the one helping you pick up the pieces when you shatter, will love that baby girl as much as any other child, will take care of life when you can’t, and will still find you sexy even after all that stress-eating weight gain.
It’s going to be the proverbial emotional roller coaster, these next ten years. You’ll have moments where you’re feeling so high, only to crash back down.
But know this -
You will grow.
You will amaze yourself.
You will let go of fears.
You will embrace the now.
And you will love this amazing, beautiful happy child so much, it will hurt. And you will be okay with that.
Oh, and that straight hair? Is going to start to curl. Go figure.
Blog Post by Phoebe Holmes
To the Me of Ten Years Ago
You…yes you, holding that sweet baby girl in the plaid dress. Let’s chat.
You don’t know it yet, but that sweet baby girl has a secret. One that will slowly and not completely reveal itself over the next few years.
It’s going to break your heart. Repeatedly.
But I promise you, it will be okay.
No. Really.
Sure, you’ll need therapy. And you’ll get a bottle of Prozac with that therapy. It’ll help. It will help you crawl out of the big cloud of overwhelmedness you will feel for a year or so. But you won’t need them forever.
That baby girl’s going to keep you up at night – literally and figuratively. You will worry over her like no other child has made you worry. I’ll be honest, you’ll never get over that worry, but it won’t haunt you constantly.
One by one, you’re going to give up on the dreams you had for this baby girl. The ones of her going to school, going to college, what she could be as an adult. The furthest ones will fade first. For a while, you live in the moment. Eventually, you allow yourself to think a couple of years ahead tops. Oh, you will plan for her long-term, but in the most generic of ways. Inheritances. Guardians. You even ponder the idea of a group home. But mostly, you don’t think of those things. You just take it a few days at a time. It’s just easier that way.
You will meet all sorts of people because of this child, and their true selves will be revealed. You’ll learn that some people just suck, some people mean well but should keep their mouths shut, some people are kind but sometimes clueless to what you’re going through. But you’ll learn that most people, at heart, are good. This child will help restore your faith in mankind again, and again, and again, just in how they treat her.
You will spend the next nine years wondering how you ended up the parent of a special needs child. You kind of get used to it, but at the same time, you will never get used to it. It will be this feeling of constant surprise when you sit back and think about it. How did I get here? How did this happen?
No, you will never quite get used to it, no matter how much you do accept it.
You will learn to be a fighter. You will find strength you never realized you had and overcome your fear of confrontation. You do this because not doing this is not an option. That baby girl needs you to be this way. And you’re not about to let that girl down.
You will find that those three amazing kids you had before her? Are even more amazing than you could imagine. They will show compassion and understanding beyond their years which will make you proud.
But those three will have to put up with so much because of their sister. Hours in waiting rooms, stuff broken by her, my inability to multi-task and spread my attention to everyone evenly. Your heart will break for them, that at a young age, they will realize that they will someday inherit this sister. But once again, these three kids will amaze you, for they will never resent that little sister. Be annoyed by her? Oh sure. But in normal ways. Those three little children who would hover around Maura’s bassinet and announce every time she cried will continue to look out after her over the coming years. They will let you know that you’ve done at least one or two things right.
That little baby girl? Is going to work so very hard the next ten years to learn things. Slowly, but surely, she will learn things. I promise you, she will walk, she will get there. She will talk too – not great, but enough. Can’t promise you on the toilet training, but don’t give up, she should get there.
You can’t tell right now, but that baby girl’s brain? Is going to freak out on her. She will be diagnosed with epilepsy. It will freak you out at first. I promise, promise that it will be okay. It will not stop her from anything. In fact, you’ll find out that things will improve for her after the diagnosis and starting medication. It will quickly go from something scary to something to be oddly grateful for. And then it will just become something that you all will be able to live with. Yes, that thing that will be on top of your “Big Scary Things I Don’t Want My Child to Have” list will suddenly be not that scary.
I promise that.
Speaking of medical things, your days of never seeing the pediatrician because your kids are so dang healthy? Those are over. You will get frequent flyer miles at the doctor’s office. You will collect cards of all sorts of medical professionals. You will learn which blood lab does the best blood draws on children. You will be able to write things like “epicanthal folds” and “oxcarbazepine” without thinking. You will also know that as much as you’re dealing with, you’re grateful that is all you are dealing with. Because there could be more, it could be worse.
Your back is going to spasm out from carrying that child around so much. You’ll end up with tennis elbow from lifting her as a seven year old into her car seat. You will put on weight from stress eating. You will lose your mind a little.
It’ll be okay.
Your world will revolve around poop. Your friends may think you talk about it too much. They will have no idea just how much you could speak of it. Don’t worry though, you will discover a small group of other moms obsessed over bowel movements. And you will be able to over-share with them.
Your life is not going to go as you had vaguely planned it. It’s going to veer off in a new direction. People will link you to the heartwarming tale “Welcome to Holland”. You will hate it. That’s okay. You’re allowed to hate it.
You will find out that there are cliques even in the special needs community. So you’ll start your own damn support group. It’ll be called “Who wants to get coffee with me?” It will be great.
You will learn to view adults with special needs in a whole new light. You will see a man in his 50′s happily buying a coloring book and it will make you think of your daughter. You will not cry in the store, but later on, there will be some tears.
You will feel so very alone with this child at times. Sometimes, at home, at night, other times, in the middle of a crowd. You will feel a cold wave of loneliness that you’re certain no one else will ever really understand.
You will feel jealousy, of other people and their children who are developing normally. Of their seemingly placid lives that don’t involved fighting schools and doctor visits and poop.
Just remember, you were raised to not whine about things and deal. And you do. You will suck it up and deal with it as best you can. And you will do so with a smile on your face. Because crying is never an option.
Well, most of the time.
You will write and blog about this child, and her life. And in doing so, find a whole slew of people out there who say “Wow! I live this too!” and “Thank you for writing exactly how I feel!” Somehow, you will become a voice for others and you’ll realize that you’re completely inadequate when it comes to saying “thank you” and still are lousy at accepting compliments. Work on that, okay?
You will discover that while you never expected to be a special needs parent, you will end up a bit of an advocate for special needs children. You will wonder more than once how you ended up on top of a soapbox. Don’t worry, you’ll be okay up there.
You will learn that the guy you chose to marry ten years before? Good choice. That man will be the one helping you pick up the pieces when you shatter, will love that baby girl as much as any other child, will take care of life when you can’t, and will still find you sexy even after all that stress-eating weight gain.
It’s going to be the proverbial emotional roller coaster, these next ten years. You’ll have moments where you’re feeling so high, only to crash back down.
But know this -
You will grow.
You will amaze yourself.
You will let go of fears.
You will embrace the now.
And you will love this amazing, beautiful happy child so much, it will hurt. And you will be okay with that.
Oh, and that straight hair? Is going to start to curl. Go figure.
Blog Post by Phoebe Holmes
Tuesday, April 30, 2013
Posts Like This
On any given day I do believe that I have come to terms with Sophie having MWS. Don't get me wrong, it truly sucks and if I could change it, I would. I have just learned to accept it.
When I read posts like this one, it takes me back to a very real, sad place. These types of things are the things that I looked forward to once I was told that I was having a little girl. I so badly want to be able to do every one of these things with Sophie, for Sophie, but that was all taken away from me. Instead of looking forward to these things, I am now grieving them and this grief process is going to take the rest of my life to get through.
Please, all of you moms to little girls out there. I beg of you, do all of these things and don't take a single one for granted!
25 RULES FOR MOTHERS OF DAUGHTERS
1. Paint her nails. Then let her scratch it off and dirty them up. Teach her to care about her appearance, and then quickly remind her that living and having fun is most important.
2. Let her put on your makeup, even if it means bright-red-smudged lips and streaked-blue eyes. Let her experiment in her attempts to be like you…then let her be herself.
3. Let her be wild. She may want to stay home and read books on the couch, or she may want to hop on the back of a motorcycle-gasp. She may be a homebody or a traveler. She may fall in love with the wrong boy, or meet mr. right at age 5. Try to remember that you were her age once. Everyone makes mistakes, let her make her own.
4. Be present. Be there for her at her Kindergarten performances, her dance recitals, her soccer games…her everyday-little-moments. When she looks through the crowds of people, she will be looking for your smile and pride. Show it to her as often as possible.
5. Encourage her to try on your shoes and play dress-up. If she would rather wear her brother’s superman cape with high heals, allow it. If she wants to wear a tutu or dinosaur costume to the grocery store, why stop her? She needs to decide who she is and be confident in her decision.
6. Teach her to be independent. Show her by example that woman can be strong. Find and follow your own passions. Search for outlets of expression and enjoyment for yourself- not just your husband or children. Define yourself by your own attributes, not by what others expect you to be. Know who you are as a person, and help your daughter find out who she is.
7. Pick flowers with her. Put them in her hair. There is nothing more beautiful than a girl and a flower.
8. Let her get messy. Get messy with her, no matter how much it makes you cringe inside. Splash in the puddles, throw snowballs, make mud pies, finger paint the walls: just let it happen. The most wonderful of memories are often the messy ones.
9. Give her good role models- you being one of them. Introduce her to successful woman- friends, co-workers, doctors, astronauts, or authors. Read to her about influential woman- Eleanor Roosevelt, Rosa Parks, Marie Curie. Read her the words of inspirational woman- Jane Austen, Sylvia Plath, Emily Dickinson. She should know that anything is possible.
10. Show her affection. Daughters will mimic the compassion of their mother. “I love yous” and Eskimo kisses go a long way.
11. Hold her hand. Whether she is 3 years-old in the parking lot or sixteen years old in the mall, hold on to her always- this will teach her to be confident in herself and proud of her family.
12. Believe in her. It is the moments that she does not believe in herself that she will need you to believe enough for both of you. Whether it is a spelling test in the first grade, a big game or recital, a first date, or the first day of college…remind her of the independent and capable woman you have taught her to be.
13. Tell her how beautiful she is. Whether it is her first day of Kindergarten, immediately after a soccer game where she is grass-stained and sweaty, or her wedding day. She needs your reminders. She needs your pride. She needs your reassurance. She is only human.
14. Love her father. Teach her to love a good man, like him. One who lets her be herself…she is after all wonderful.
15. Make forts with boxes and blankets. Help her to find magic in the ordinary, to imagine, to create and to believe in fairy tales. Someday she will make her 5 by 5 dorm-room her home with magic touches and inspiration. And she will fall in love with a boy and believe him to be Prince Charming.
16. Read to her. Read her Dr. Seuss and Eric Carle. But also remember the power of Sylvia Plath and Robert Frost. Show her the beauty of words on a page and let her see you enjoy them. Words can be simply written and simply spoken, yet can harvest so much meaning. Help her to find their meaning.
17. Teach her how to love- with passion and kisses. Love her passionately. Love her father passionately and her siblings passionately. Express your love. Show her how to love with no restraint. Let her get her heart broken and try again. Let her cry, and gush, giggle and scream. She will love like you love or hate like you hate. So, choose love for both you and her.
18. Encourage her to dance and sing. Dance and sing with her- even if it sounds or looks horrible. Let her wiggle to nursery rhymes. Let her dance on her daddy's feet and spin in your arms. Then later, let her blast noise and headbang in her bedroom with her door shut if she wants. Or karaoke to Tom Petty in the living room if she would rather. Introduce her to the classics- like The Beatles- and listen to her latest favorite- like Taylor Swift. Share the magic of music together, it will bring you closer- or at least create a soundtrack to your life together.
19. Share secrets together. Communicate. Talk. Talk about anything. Let her tell you about boys, friends, school. Listen. Ask questions. Share dreams, hopes, concerns. She is not only your daughter, you are not only her mother. Be her friend too.
20. Teach her manners. Because sometimes you have to be her mother, not just her friend. The world is a happier place when made up of polite words and smiles.
21. Teach her when to stand-up and when to walk away. Whether she has classmates who tease her because of her glasses, or a boyfriend who tells her she is too fat - let her know she does not have to listen. Make sure she knows how to demand respect - she is worthy of it. It does not mean she has to fight back with fists or words, because sometimes you say more with silence. Also make sure she knows which battles are worth fighting. Remind her that some people can be mean and nasty because of jealousy, or other personal reasons. Help her to understand when to shut her mouth and walk-away. Teach her to be the better person.
22. Let her choose who she loves. Even when you see through the charming boy she thinks he is, let her love him without your disapproving words; she will anyway. When he breaks her heart, be there for her with words of support rather than I told-you-so. Let her mess up again and again until she finds the one. And when she finds the one, tell her.
23. Mother her. Being a mother - to her - is undoubtedly one of your greatest accomplishments. Share with her the joys of motherhood, so one day she will want to be a mother too. Remind her over and over again with words and kisses that no one will ever love her like you love her. No one can replace or replicate a mother's love for their children.
24. Comfort her. Because sometimes you just need your mommy. When she is sick, rub her back, make her soup and cover her in blankets - no matter how old she is. Someday, if she is giving birth to her own child, push her hair out of her face, encourage her, and tell her how beautiful she is. These are the moments she will remember you for. And someday when her husband rubs her back in attempt to comfort her...she may just whisper, "I need my mommy."
25. Be home. When she is sick with a cold or broken heart, she will come to you; welcome her. When she is engaged or pregnant, she will run to you to share her news; embrace her. When she is lost or confused, she will search for you; find her. When she needs advice on boys, schools, friends or an outfit; tell her. She is your daughter and will always need a safe harbor - where she can turn a key to see comforting eyes and a familiar smile; be home.
When I read posts like this one, it takes me back to a very real, sad place. These types of things are the things that I looked forward to once I was told that I was having a little girl. I so badly want to be able to do every one of these things with Sophie, for Sophie, but that was all taken away from me. Instead of looking forward to these things, I am now grieving them and this grief process is going to take the rest of my life to get through.
Please, all of you moms to little girls out there. I beg of you, do all of these things and don't take a single one for granted!
25 RULES FOR MOTHERS OF DAUGHTERS
1. Paint her nails. Then let her scratch it off and dirty them up. Teach her to care about her appearance, and then quickly remind her that living and having fun is most important.
2. Let her put on your makeup, even if it means bright-red-smudged lips and streaked-blue eyes. Let her experiment in her attempts to be like you…then let her be herself.
3. Let her be wild. She may want to stay home and read books on the couch, or she may want to hop on the back of a motorcycle-gasp. She may be a homebody or a traveler. She may fall in love with the wrong boy, or meet mr. right at age 5. Try to remember that you were her age once. Everyone makes mistakes, let her make her own.
4. Be present. Be there for her at her Kindergarten performances, her dance recitals, her soccer games…her everyday-little-moments. When she looks through the crowds of people, she will be looking for your smile and pride. Show it to her as often as possible.
5. Encourage her to try on your shoes and play dress-up. If she would rather wear her brother’s superman cape with high heals, allow it. If she wants to wear a tutu or dinosaur costume to the grocery store, why stop her? She needs to decide who she is and be confident in her decision.
6. Teach her to be independent. Show her by example that woman can be strong. Find and follow your own passions. Search for outlets of expression and enjoyment for yourself- not just your husband or children. Define yourself by your own attributes, not by what others expect you to be. Know who you are as a person, and help your daughter find out who she is.
7. Pick flowers with her. Put them in her hair. There is nothing more beautiful than a girl and a flower.
8. Let her get messy. Get messy with her, no matter how much it makes you cringe inside. Splash in the puddles, throw snowballs, make mud pies, finger paint the walls: just let it happen. The most wonderful of memories are often the messy ones.
9. Give her good role models- you being one of them. Introduce her to successful woman- friends, co-workers, doctors, astronauts, or authors. Read to her about influential woman- Eleanor Roosevelt, Rosa Parks, Marie Curie. Read her the words of inspirational woman- Jane Austen, Sylvia Plath, Emily Dickinson. She should know that anything is possible.
10. Show her affection. Daughters will mimic the compassion of their mother. “I love yous” and Eskimo kisses go a long way.
11. Hold her hand. Whether she is 3 years-old in the parking lot or sixteen years old in the mall, hold on to her always- this will teach her to be confident in herself and proud of her family.
12. Believe in her. It is the moments that she does not believe in herself that she will need you to believe enough for both of you. Whether it is a spelling test in the first grade, a big game or recital, a first date, or the first day of college…remind her of the independent and capable woman you have taught her to be.
13. Tell her how beautiful she is. Whether it is her first day of Kindergarten, immediately after a soccer game where she is grass-stained and sweaty, or her wedding day. She needs your reminders. She needs your pride. She needs your reassurance. She is only human.
14. Love her father. Teach her to love a good man, like him. One who lets her be herself…she is after all wonderful.
15. Make forts with boxes and blankets. Help her to find magic in the ordinary, to imagine, to create and to believe in fairy tales. Someday she will make her 5 by 5 dorm-room her home with magic touches and inspiration. And she will fall in love with a boy and believe him to be Prince Charming.
16. Read to her. Read her Dr. Seuss and Eric Carle. But also remember the power of Sylvia Plath and Robert Frost. Show her the beauty of words on a page and let her see you enjoy them. Words can be simply written and simply spoken, yet can harvest so much meaning. Help her to find their meaning.
17. Teach her how to love- with passion and kisses. Love her passionately. Love her father passionately and her siblings passionately. Express your love. Show her how to love with no restraint. Let her get her heart broken and try again. Let her cry, and gush, giggle and scream. She will love like you love or hate like you hate. So, choose love for both you and her.
18. Encourage her to dance and sing. Dance and sing with her- even if it sounds or looks horrible. Let her wiggle to nursery rhymes. Let her dance on her daddy's feet and spin in your arms. Then later, let her blast noise and headbang in her bedroom with her door shut if she wants. Or karaoke to Tom Petty in the living room if she would rather. Introduce her to the classics- like The Beatles- and listen to her latest favorite- like Taylor Swift. Share the magic of music together, it will bring you closer- or at least create a soundtrack to your life together.
19. Share secrets together. Communicate. Talk. Talk about anything. Let her tell you about boys, friends, school. Listen. Ask questions. Share dreams, hopes, concerns. She is not only your daughter, you are not only her mother. Be her friend too.
20. Teach her manners. Because sometimes you have to be her mother, not just her friend. The world is a happier place when made up of polite words and smiles.
21. Teach her when to stand-up and when to walk away. Whether she has classmates who tease her because of her glasses, or a boyfriend who tells her she is too fat - let her know she does not have to listen. Make sure she knows how to demand respect - she is worthy of it. It does not mean she has to fight back with fists or words, because sometimes you say more with silence. Also make sure she knows which battles are worth fighting. Remind her that some people can be mean and nasty because of jealousy, or other personal reasons. Help her to understand when to shut her mouth and walk-away. Teach her to be the better person.
22. Let her choose who she loves. Even when you see through the charming boy she thinks he is, let her love him without your disapproving words; she will anyway. When he breaks her heart, be there for her with words of support rather than I told-you-so. Let her mess up again and again until she finds the one. And when she finds the one, tell her.
23. Mother her. Being a mother - to her - is undoubtedly one of your greatest accomplishments. Share with her the joys of motherhood, so one day she will want to be a mother too. Remind her over and over again with words and kisses that no one will ever love her like you love her. No one can replace or replicate a mother's love for their children.
24. Comfort her. Because sometimes you just need your mommy. When she is sick, rub her back, make her soup and cover her in blankets - no matter how old she is. Someday, if she is giving birth to her own child, push her hair out of her face, encourage her, and tell her how beautiful she is. These are the moments she will remember you for. And someday when her husband rubs her back in attempt to comfort her...she may just whisper, "I need my mommy."
25. Be home. When she is sick with a cold or broken heart, she will come to you; welcome her. When she is engaged or pregnant, she will run to you to share her news; embrace her. When she is lost or confused, she will search for you; find her. When she needs advice on boys, schools, friends or an outfit; tell her. She is your daughter and will always need a safe harbor - where she can turn a key to see comforting eyes and a familiar smile; be home.
Monday, April 15, 2013
Thankful for my children....all 4 of them.
As I am trying to research as much as I can about the doctor in PA that is performing after-birth abortions, I am finiding it more and more difficult to research. Not because I can't handle the heart wrenching, make you want to vomit details, but because of how people think it is ok to kill a baby just because it isn't perfect.
When I am reading these articles I can't help think of Sophie, Denton & Quniton, and even Shane. Here is a little recap of my twins and Shane's beginning, just for reference.
Shane was born at 26.5 weeks gestation. His mother went in to pre-eclaympsia (sp?) and had to have an emergency c-section. Shane was in the hospital for 3 months and on oxygen when he came home for another 3 months. An entire side of Shane's face was sunken in and he only weighed a little over 2lbs. He fit inside of Dan's baseball cap.
Denton and Quinton were born at 21 weeks 3 days gestation. Denton weighed a whopping 15 ounces and Quinton weighed in at 8.4 ounces. A week before I went in to labor with D & Q we were asked to have an abortion. We were told that it was what needed to be done because the boys didn't have a chance of survival once they were here. Dan and I both told the high risk doctor that it wasn't an option for us and we wanted to know what other options we had. Obviously we continued our pregnancy as long as God allowed us to and the boys were born extremely early. Denton lived for 17 minutes and never took a breath. Some doctors would say he wasn't viable. Quinton had severe physical disabilities which made him be stillborn and incompatible with life.
Thinking of every single one of my children I can help but fight back the tears because everything that I have read suggests that my babies weren't "actual people" and therefore if I want to have them killed after I deliver them, then it shouldn't be a problem. It is so hard for me to fathom that a mother can make this choice, as if it should be a choice that one is allowed to make. Given what the "experts" are saying, my children, except for Sophie, would have been great candidates for the after-birth abortion because they were born with imperfections. That absolutely breaks my heart and fills me with rage at the same time.
Then there is Sophie. At first sight she was a completely healthy baby girl weighing 7lbs 11 oz and 21" long born at 38.5 weeks gestation = full term. She doesn't fall in to the category of the imperfect babies...at first glance, but if I determined that I didn't want her because it would too much of an economical burden for me, then some people think it is ok for me to have her killed when she was born.
PEOPLE......CONDOMS AND BIRTH CONTROL ARE FREE!!!!!!!
Today, Shane is a perfectly healthy 12 year old young man. He is handsome, smart, funny, caring, and full of vigor! The doctors say that you couldn't ask for better vision in a child. Shane has absolutely NO side affects from being born so early. He is truly a miracle! Sophie has had her challenges, but today, she is a healthy, spunky, spoiled little 2 year old who tugs at my heart strings daily.
To the people who think that after-birth abortions are ok, you will never get to experience this. You will never see what your child was supposed to be. Newsflash...wait for it....if you buy a car and regret it you can't take it back. If you buy a house and decide it is too much of a financial burden for you, you can't give it back without consequences. Don't think for one second you won't have consequences for killing your baby.
And they say hindsight in 20/20.
When I am reading these articles I can't help think of Sophie, Denton & Quniton, and even Shane. Here is a little recap of my twins and Shane's beginning, just for reference.
Shane was born at 26.5 weeks gestation. His mother went in to pre-eclaympsia (sp?) and had to have an emergency c-section. Shane was in the hospital for 3 months and on oxygen when he came home for another 3 months. An entire side of Shane's face was sunken in and he only weighed a little over 2lbs. He fit inside of Dan's baseball cap.
Denton and Quinton were born at 21 weeks 3 days gestation. Denton weighed a whopping 15 ounces and Quinton weighed in at 8.4 ounces. A week before I went in to labor with D & Q we were asked to have an abortion. We were told that it was what needed to be done because the boys didn't have a chance of survival once they were here. Dan and I both told the high risk doctor that it wasn't an option for us and we wanted to know what other options we had. Obviously we continued our pregnancy as long as God allowed us to and the boys were born extremely early. Denton lived for 17 minutes and never took a breath. Some doctors would say he wasn't viable. Quinton had severe physical disabilities which made him be stillborn and incompatible with life.
Thinking of every single one of my children I can help but fight back the tears because everything that I have read suggests that my babies weren't "actual people" and therefore if I want to have them killed after I deliver them, then it shouldn't be a problem. It is so hard for me to fathom that a mother can make this choice, as if it should be a choice that one is allowed to make. Given what the "experts" are saying, my children, except for Sophie, would have been great candidates for the after-birth abortion because they were born with imperfections. That absolutely breaks my heart and fills me with rage at the same time.
Then there is Sophie. At first sight she was a completely healthy baby girl weighing 7lbs 11 oz and 21" long born at 38.5 weeks gestation = full term. She doesn't fall in to the category of the imperfect babies...at first glance, but if I determined that I didn't want her because it would too much of an economical burden for me, then some people think it is ok for me to have her killed when she was born.
PEOPLE......CONDOMS AND BIRTH CONTROL ARE FREE!!!!!!!
Today, Shane is a perfectly healthy 12 year old young man. He is handsome, smart, funny, caring, and full of vigor! The doctors say that you couldn't ask for better vision in a child. Shane has absolutely NO side affects from being born so early. He is truly a miracle! Sophie has had her challenges, but today, she is a healthy, spunky, spoiled little 2 year old who tugs at my heart strings daily.
To the people who think that after-birth abortions are ok, you will never get to experience this. You will never see what your child was supposed to be. Newsflash...wait for it....if you buy a car and regret it you can't take it back. If you buy a house and decide it is too much of a financial burden for you, you can't give it back without consequences. Don't think for one second you won't have consequences for killing your baby.
And they say hindsight in 20/20.
Thursday, March 28, 2013
A Letter to Heaven
At Tiny Purpose last month we were encouraged to write a letter to our baby or babies in heaven. I was resistant at first, but when I started writing, the ink just flowed from my ball point pen. It is like my heart knew exactly what it wanted to say. As my hand moved across the page so effortlessly, my heart just poured out on paper. It's funny how I can write the words on paper with a smile on my face, but when I read the letter out loud, my voice cracked, my chest was tight, and I had to wipe back tears.
I am sharing this with you so you can see that I am in a good place. There isn't a day that goes by that I don't think about Denton and Quinton in some way. I may tell people verbally that I have 2 children, but in my head and heart, I have 4. I just don't feel like explaining it at times and I am sure they would understand. Some days are harder, some days are easy. Some days I cry, some days I smile.
I am sharing this with you so you can see that I am in a good place. There isn't a day that goes by that I don't think about Denton and Quinton in some way. I may tell people verbally that I have 2 children, but in my head and heart, I have 4. I just don't feel like explaining it at times and I am sure they would understand. Some days are harder, some days are easy. Some days I cry, some days I smile.
Denton & Quinton
Can you believe that it has been almost 4 years since I held
you in my arms? I think of you daily. Sometimes I am sad and I fight back the
tears, other times I smile because you are up in heaven. Speaking of heaven,
say hello to your angel friends for me. I am sure you have met them. Aunt Sara,
Auntie Sam and many of my friends all have angel babies up there. I’m sure you
play together daily, just like your Auntie’s and I do down here.
When I think of you I picture you looking like your older
brother, Shane. The tiniest details such as a crooked pinky finger, a unibrow
that needs waxed, and the most beautiful complexion with dark skin, all of
which I was able to identify on you Denton. Quinton – How does it feel to dance
around on your brand new feet that have all your toes, hug people with your
perfect arms, see Jesus with your new eyes, and love with the heart God had
waiting for you in heaven upon your arrival? I can’t wait to see you as a whole
person.
I also want to thank you. Because of you I have been able to
meet some pretty amazing people. People who have angels up there with you. I am positive you know who they are. Just so
you know, their moms are just as amazing as their babies are. These moms are some
of the strongest women I have been blessed to know. Thank you for teaching me how to love. Truly
love, deeply, passionately, and in the moment.
I know this may sound odd, but thank you for Sophie. I am
sure you and God talk about her often. Maybe He even lets you take part in the
amazing plans He has for her. They have to be big plans because of everything
your sister has had to endure. Not that it is any surprise to you, but God was
faithful in the healing of your sister’s heart! Quinton and Sophie have that in
common! If you get the chance, tell God that all I want for Sophie’s birthday
is for her to crawl!
In closing know that you are loved. You were wanted, and
still wanted. I would give the world to hold you one more time Denton, and for
the first time Quinton. Goodbye for now, not forever!
Love,
Mommy
Friday, March 8, 2013
I Won't Let Go
As parents I believe there are so many things that we are supposed to teach our children and things our children are supposed to teach us that goes beyond the birds and the bees, beyond tying their shoes. They are the things that make us good people, things that make waking up every day worth it.
With Shane I am able to see glimpses of hope that we are doing the right thing when he opens the door for someone, or when we see him be kind to another person. I have confirmation from other parents that Shane is a fantastic boy, so respectful, and well behaved. Those are the moments I don't want to let go of. Those are the times that I have a smile on my face and on the inside I am giving high fives to my husband and myself because, yes, we are doing the right things. Yes, Shane is going to be a terror at home sometimes. He is going to get in trouble at school and at home. We struggle with him making poor decisions, but isn't that what living and learning is all about? The growing pains that lets us know we are human?
With Sophie, it is different. I can try to teach her everything I know about life, but unlike Shane, I won't have that same confirmation with Sophie that she gets it. With Sophie the teaching will be more systematic, ordered (not my favorite way to do things), well planned. We will have to do things over and over with her, just so she learns how to do it. Will Sophie ever learn to tie her shoes? I don't have the answer to that. What I can say though is that I won't stop trying. Will I get to see my daughter grow in to this beautiful person, a person that cares about the world she lives in, and the people she shares the planet with? Yes, I will be able to see her grow in to a beautiful woman, but I may not be able to see the tell tale signs like I can with Shane.
In this life there the only 2 things I want my kids to not only know, but to fully understand and never forget. First and foremost, Shane and Sophie, you will always be loved. There is nothing you can do to make your father and I not love you. You can try, and I am sure you will try, but our loves remains constant. Shane has asked me on several occasions when he has done something less than satisfactory or he knows he really messed up, if I still love him. The answer is always the same, Yes! I believe that this is the most important for my kids to understand.
The 2nd is expressed in these song lyrics. I can't listen to this song without tearing up. For Shane, there are going to be times he doesn't want me to fight his fights. With Sophie, I am always going to have to fight her fights. But I promise you, I Won't Let Go!
It’s like a storm
That cuts a path
It’s breaks your will
It feels like that
You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains
I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let you fall
Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it
Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I’m gonna hold you
And I wont let go
Wont let you go
No I wont
Rascal Flatts – I Won’t Let Go Lyrics
With Shane I am able to see glimpses of hope that we are doing the right thing when he opens the door for someone, or when we see him be kind to another person. I have confirmation from other parents that Shane is a fantastic boy, so respectful, and well behaved. Those are the moments I don't want to let go of. Those are the times that I have a smile on my face and on the inside I am giving high fives to my husband and myself because, yes, we are doing the right things. Yes, Shane is going to be a terror at home sometimes. He is going to get in trouble at school and at home. We struggle with him making poor decisions, but isn't that what living and learning is all about? The growing pains that lets us know we are human?
With Sophie, it is different. I can try to teach her everything I know about life, but unlike Shane, I won't have that same confirmation with Sophie that she gets it. With Sophie the teaching will be more systematic, ordered (not my favorite way to do things), well planned. We will have to do things over and over with her, just so she learns how to do it. Will Sophie ever learn to tie her shoes? I don't have the answer to that. What I can say though is that I won't stop trying. Will I get to see my daughter grow in to this beautiful person, a person that cares about the world she lives in, and the people she shares the planet with? Yes, I will be able to see her grow in to a beautiful woman, but I may not be able to see the tell tale signs like I can with Shane.
In this life there the only 2 things I want my kids to not only know, but to fully understand and never forget. First and foremost, Shane and Sophie, you will always be loved. There is nothing you can do to make your father and I not love you. You can try, and I am sure you will try, but our loves remains constant. Shane has asked me on several occasions when he has done something less than satisfactory or he knows he really messed up, if I still love him. The answer is always the same, Yes! I believe that this is the most important for my kids to understand.
The 2nd is expressed in these song lyrics. I can't listen to this song without tearing up. For Shane, there are going to be times he doesn't want me to fight his fights. With Sophie, I am always going to have to fight her fights. But I promise you, I Won't Let Go!
It’s like a storm
That cuts a path
It’s breaks your will
It feels like that
You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains
I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let you fall
Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it
Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I’m gonna hold you
And I wont let go
Wont let you go
No I wont
Rascal Flatts – I Won’t Let Go Lyrics
Monday, February 11, 2013
My Reality
My reality is different from what most of your has been or will be. I am not asking for pitty, or for you to feel sorry for me, I just want to share what has been on my heart all weekend.
I was on Facebook, like usual, and I see all these posts in my newsfeed about parents getting their kids ready for the daddy/daughter dance this weekend. I looked through their pictures, forced a smile on my face, and just hurt a little more inside.
Driving home Saturday I pass Madison school and see all the girls dressed up in the most beautiful dresses, their hair done nicely, and their daddy's with big smiles on their faces. I assume those smiles were for the joy that they were bringing to their daughters that night. Smiles to see their daughters growing up in to beautiful young ladies. I was broken as I drove past. I know that my husband will be able to take Sophie to a daddy/daughter dance at some point, but it won't be the same. Instead of picking out the cutest shoes to go with the cutest dress, I will be picking out shoes that will allow her braces to fit inside and enable her to be able to dance with her daddy. Instead of doing everything I can to make sure they have the best time possible, I am going to be worrying about my daughter being made fun of because she doesn't look like everyone else, or talk, or maybe even not walk. That is my reality.
I mean, let's face it, as parents/moms we don't grow up wanting to be parents of special needs kids. We want to be parents of the kids that will grow up to be doctors, lawyers, astronauts, or even the President of the United States. We don't raise our children to be mean to other kids, but society teaches that it is ok to treat people who are different poorly. We all want what is best for our children, even if what is best for your child isn't what is best for mine. I just know that I am going to be that mom who is jealous of other moms and it breaks my heart. I know I will get to a point, eventually, where it won't bother me so much, but I am NO where close to that. I am getting better, I feel like I make more and more progress the other day. However, Thursday night and Saturday wasn't one of those days.
I am sure this hit me harder on Saturday because the entire week last week I spent the majority of my time emailing Sophie's PT and the Wheeler Chair Supplies expert at U of M as well as researching the different things Sophie is going to need as well as finding someone to cover Sophie for Life Insurance. It is an overwhelming process. I am lucky enough to have one of my best friends, Kate, by my side to help me through the process. She has a daughter, Jozlyn, that has been through the same process as Sophie and Kate can tell me exactly what I need to do. I'm not sure I would be as far as I am without her.
So, I guess you could say that today I am feeling sorry for myself, and that is why I don't need anyone else to. My reality consists of Special Bath Seats, Toddler Assist Chairs, Mobile Seats, Feeding Seats, and wheelchairs/strollers, and not of the frilly dresses and sparkly shoes. I don't feel like I can live in the moment, I have to be preparing for the needs Sophie will have as she gets older.
On a side note, here is Sophie's new pose lately! Whether she is sitting in her stroller or lying on the floor, you can bet you will see this if you are there long enough!
I was on Facebook, like usual, and I see all these posts in my newsfeed about parents getting their kids ready for the daddy/daughter dance this weekend. I looked through their pictures, forced a smile on my face, and just hurt a little more inside.
Driving home Saturday I pass Madison school and see all the girls dressed up in the most beautiful dresses, their hair done nicely, and their daddy's with big smiles on their faces. I assume those smiles were for the joy that they were bringing to their daughters that night. Smiles to see their daughters growing up in to beautiful young ladies. I was broken as I drove past. I know that my husband will be able to take Sophie to a daddy/daughter dance at some point, but it won't be the same. Instead of picking out the cutest shoes to go with the cutest dress, I will be picking out shoes that will allow her braces to fit inside and enable her to be able to dance with her daddy. Instead of doing everything I can to make sure they have the best time possible, I am going to be worrying about my daughter being made fun of because she doesn't look like everyone else, or talk, or maybe even not walk. That is my reality.
I mean, let's face it, as parents/moms we don't grow up wanting to be parents of special needs kids. We want to be parents of the kids that will grow up to be doctors, lawyers, astronauts, or even the President of the United States. We don't raise our children to be mean to other kids, but society teaches that it is ok to treat people who are different poorly. We all want what is best for our children, even if what is best for your child isn't what is best for mine. I just know that I am going to be that mom who is jealous of other moms and it breaks my heart. I know I will get to a point, eventually, where it won't bother me so much, but I am NO where close to that. I am getting better, I feel like I make more and more progress the other day. However, Thursday night and Saturday wasn't one of those days.
I am sure this hit me harder on Saturday because the entire week last week I spent the majority of my time emailing Sophie's PT and the Wheeler Chair Supplies expert at U of M as well as researching the different things Sophie is going to need as well as finding someone to cover Sophie for Life Insurance. It is an overwhelming process. I am lucky enough to have one of my best friends, Kate, by my side to help me through the process. She has a daughter, Jozlyn, that has been through the same process as Sophie and Kate can tell me exactly what I need to do. I'm not sure I would be as far as I am without her.
So, I guess you could say that today I am feeling sorry for myself, and that is why I don't need anyone else to. My reality consists of Special Bath Seats, Toddler Assist Chairs, Mobile Seats, Feeding Seats, and wheelchairs/strollers, and not of the frilly dresses and sparkly shoes. I don't feel like I can live in the moment, I have to be preparing for the needs Sophie will have as she gets older.
On a side note, here is Sophie's new pose lately! Whether she is sitting in her stroller or lying on the floor, you can bet you will see this if you are there long enough!
Wednesday, January 23, 2013
Mikella Gives Hope
Mikella is a little girl with MWS that lives in New Zeland! I just came across her page today when on FB looking in my Mowat-Wilson group. I can't tell you what this did to my heart. You are going to have to experience it for yourself.
Go to: https://sites.google.com/site/mikellamws/Home
On the left you will see
A. Mikella in Action.
Watch the videos and experience the Hope that Mikella gave me today!
Love you!
Go to: https://sites.google.com/site/mikellamws/Home
On the left you will see
A. Mikella in Action.
Watch the videos and experience the Hope that Mikella gave me today!
Love you!
Thursday, January 3, 2013
Happy New Year
Good Morning Everyone! I know it has been a while since my last post but we have been soaking up the time we have had with the kids! I hope you all had a blessed Christmas and a great start to the new year!
Currently, things are going well. Sophie is doing amazingly well. She is wanting to stand all of the time, do flips in the air with her dad, and attempt to get in to 4 point on her own. When I say attempt, it means she likes to get on her knees and rock. She doesn't want to use her hands or arms or else she would be crawling by now.
Sophie also goes to school now. She attends Toddler Group every Tuesday and Thursday. There she is learning to use some sign language, drink from a cup, and to hold on to food herself and eat it. Sophie is also getting therapy still when she is there. Luckily, it is only 1 hour because that is all Sophie is really willing to give. (The picture below wouldn't rotate for me but it is her locker!)
We also moved Shane to Madison schools after Thanksgiving break. Shane was having difficulties behaving at Adrian as well as difficulties with his grades. We kept giving him chances to make the changes needed and he just didn't. From the kitchen window and back deck of our house, we can see Madison school. Shane is able just to walk to school daily. We are still having some issues, but then again, Shane is 12! I expect that it will get worse before it gets better. I do have to say, that I couldn't have hand picked a better big brother for Sophie, he honestly is the BEST!
Sophie has a heart doctor appointment next month and from there, we will go every 6 months or so! I will take it! Sophie doesn't have to see her Hirschsprung's doctor at all unless there is a problem! PTL!! As far as her eyes, well, that is a work in progress. I know that her sight is improving every day, and that is all we can ask for at this point in time. We notice things like Sophie opening her mouth when you put an empty spoon up to her mouth like you are going to feed her. I love that she knows what it is and that she has to open her mouth. I know it is a mean trick, but it warms my heart to see her do it. She is also tracking more. Shane will work with her a lot on this and he becomes so excited to see her follow an object he is holding. Her seizures are under control right now. She still take Topamax twice a day for it. We see the neurologist this month sometime (maybe I should check that out) and he didn't need an EEG with it! That makes me happy!
As a family we are looking forward to 2013. 2012 had some ups and a lot of downs for us. Starting the new year we feel like we will have more ups this year and we can't wait. We are in need of them!
Currently, things are going well. Sophie is doing amazingly well. She is wanting to stand all of the time, do flips in the air with her dad, and attempt to get in to 4 point on her own. When I say attempt, it means she likes to get on her knees and rock. She doesn't want to use her hands or arms or else she would be crawling by now.
Sophie also goes to school now. She attends Toddler Group every Tuesday and Thursday. There she is learning to use some sign language, drink from a cup, and to hold on to food herself and eat it. Sophie is also getting therapy still when she is there. Luckily, it is only 1 hour because that is all Sophie is really willing to give. (The picture below wouldn't rotate for me but it is her locker!)
We also moved Shane to Madison schools after Thanksgiving break. Shane was having difficulties behaving at Adrian as well as difficulties with his grades. We kept giving him chances to make the changes needed and he just didn't. From the kitchen window and back deck of our house, we can see Madison school. Shane is able just to walk to school daily. We are still having some issues, but then again, Shane is 12! I expect that it will get worse before it gets better. I do have to say, that I couldn't have hand picked a better big brother for Sophie, he honestly is the BEST!
.JPG) |
| Shane brushing Sophie's teeth! All 6 of them! |
Sophie has a heart doctor appointment next month and from there, we will go every 6 months or so! I will take it! Sophie doesn't have to see her Hirschsprung's doctor at all unless there is a problem! PTL!! As far as her eyes, well, that is a work in progress. I know that her sight is improving every day, and that is all we can ask for at this point in time. We notice things like Sophie opening her mouth when you put an empty spoon up to her mouth like you are going to feed her. I love that she knows what it is and that she has to open her mouth. I know it is a mean trick, but it warms my heart to see her do it. She is also tracking more. Shane will work with her a lot on this and he becomes so excited to see her follow an object he is holding. Her seizures are under control right now. She still take Topamax twice a day for it. We see the neurologist this month sometime (maybe I should check that out) and he didn't need an EEG with it! That makes me happy!
As a family we are looking forward to 2013. 2012 had some ups and a lot of downs for us. Starting the new year we feel like we will have more ups this year and we can't wait. We are in need of them!
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