Denton & Quinton's Story

First, I want to thank you all for coming out and celebrating the lives of your precious babies that were taken too soon. For some of you this is a walk you do every year, for others this is your first. For those of you here today for the first time I am sure you were a nervous wreck this morning, and every day for this past week leading up to today were hard. I am sure you had a knot in the pit of your stomach and wondered how you were going to keep it together.  I am even more certain that today is something you never wanted to do. It is something you never imagined would be on your calendar year after year after year. I know these things because 7 years ago I was in your shoes. I felt those same emotions. I wasn’t able to keep it together and the good news is, you don’t have to either!

In order to get where you want to go, you must first identify where you are right now. 
John Pierpont Morgan   said "The first step towards getting somewhere is to decide that you are not going to stay where you are." 

Where I am today isn’t even close to where I was 8 years ago. Let me share with you our beautiful, painful, but oh so worth it journey!

February 9^th, 2009 was a normal day at work until I took 2 different pregnancy tests that revealed to me I was indeed pregnant. I had had my suspicions but those two little pink lines confirmed it. I went the entire day thinking of how to tell my husband. I knew he wasn’t going to be excited because this wasn’t planned. I wasn’t even sure if I was excited.

After telling Dan that I was pregnant we both were quiet for quite some time. We took the time we needed to process everything that was happening. How our lives were going to change. I stressed over not having a big enough place to live and that Dan was currently on unemployment. How were we going to make it work? I didn’t know how all of it was going to fall in to place, I just knew it would.

I had the perfect pregnancy. I was sick in the beginning but it subsided. I was in amazement that there was a human life growing inside of me. I prayed for my baby every single day. I wrote to my baby in a journal I kept beside my bed. I was thankful for the blessing because I knew that all children were blessings from God. I was about to become a mom for the first time and although I was scared, I was excited.

Routine doctor appointments showed that our baby was developing at a normal rate. My blood tests came back great and I didn’t show any indicators of having anything go wrong. I had never been pregnant before so when I was getting that beautiful baby bump so early, I didn’t think anything of it. By the time I was 20 weeks pregnant I looked as if I was almost full term. People would even joke I was pregnant with twins. We quickly shut them down because all of our ultrasounds and Doppler readings only showed one heart beat. I knew there was only one baby in there!

Dan and I drove separately to the big 20 week ultrasound because he needed to take our son, Shane, who was Dan’s from a previous marriage, to school that morning. Shane came to live with us permanently just 2 months before because his mom passed away. It was all new to us and even more for us to figure out. But we were figuring it out together. As I waited and prayed for my bladder to not explode and me to not pee everywhere it was hard to contain my excitement. I needed to know if our baby was a boy or a girl. Dan knew he was a boy…so he says. I wanted our baby to be a girl since we had our son Shane and I grew up with 6 brothers. I had had enough of boys! I needed someone on my side wearing pink!

 As I lay on the bed with the U/S tech to my right and Dan sitting in the chair at the foot of the bed he asked the tech how many babies were in there because he thought he saw her type the number 2. She laughed and said, nope, just 1.

As the U/s continued the tech in training seemed to be having trouble with getting the images needed, or so she said. At that time they brought in another, more experienced tech so she could get what the doctor needed. At that point we were told we were having a baby BOY! Yes, my husband was right, although I don’t like to admit it. He finally broke a smile and showed some excitement. Shane was going to have a brother to play in the dirt with, climb trees with, and become best friends with.

As the techs finished up we were told they were going to make sure the radiologist was happy with all of their images and they would be back to let us know shortly. Because we thought everything was ok Dan left to take Shane his book bag that he forgot in in the car on the way to school. Within 3 minutes of Dan leaving in come the two techs and the radiologist. He cut right to the chase. “Ma’am, you are pregnant with twins but there is a caveat.”  I was in shock. My hand instantly moved over my belly like I was going to protect not one, but two of my babies. I was told that I had one twin that looked normal and healthy and another one that was developing as tissue and wasn’t viable. My world stopped. In that moment I was broken. Completely broken. I was scared and alone.  From there I was told to head directly to my OB’s office and she would be waiting for us. I went home to get Dan and frantically I informed him we had to go. On the way I was able to explain, through the tears, what I had learned.

Our wonderful OB was there, waiting for us just as I was told. We talked about so much, about options and about how my care was going to be transferred to a high risk doctor and I had an appointment the next day.

Our appointment on June 2^nd, 2009 is one I will never forget. Our new doctor was cold, hard, and abrasive. I was just told one of my babies was going to die outside of the womb and he didn’t provide any comfort. Instead, he asked me to have an abortion. I couldn’t catch my breath. I couldn’t believe what I had just been asked. No, absolutely not. These were my babies and I wouldn’t terminate my pregnancy. My 2^nd option was to let nature take its course. If we did that we would have about a 30% chance of survival of our “pump” twin as they so kindly referred to him as. Lastly, I was given the option to have an umbilical cord oblation and that would require me to be transported to Cincinnati. I wasn’t able to get in for over a week. I was left waiting with a heart full of worry and a mind I couldn’t shut off. The heartache was deep inside of my soul. I never knew one could love so deeply and be so hurt by that same immense amount of love.

On June 7^th I woke up to a small amount of blood in my shorts. Dan and I rushed over to the ER and we were escorted to labor and delivery. Upon arrival my cervix was checked and it was still closed. I was able to hear my sweet baby boy’s heart beat on the Doppler. My blood pressure started to go back down to normal. As I got up to go to the bathroom I noticed that I had peed a little, or so I thought. The nurses came in and wiped it up like nothing ever happened.

I was sent home that evening to lie on the couch and get to Cincinnati the next morning. They were upping my surgical appointment so that my babies would have a fighting chance. Around 11 pm that night my husband asked, for the 50^th time, if he could take me back to the hospital. I had been having contractions but wouldn’t admit it. I was still peeing my pants, or so I thought. On the way to the hospital, which was a 7 minute drive I had 9 contractions. They were coming hard and piggybacking off one another.

Once I was put in the Non-Stress test room, yes, the one you are all familiar with, the nurses checked and realized I wasn’t peeing myself, I was leaking amniotic fluid. I could see the worry on their faces but no one was talking. I was only 21 weeks 3 days pregnant. My babies wouldn’t survive outside of my body. My body was failing them.

It was just moments later when my water broke and I knew my babies were going to die. My husband did the best he could to reassure me that everything was going to be ok. I cried out to him that it wasn’t going to be ok. The amount of fluid and blood that came out of my body was so bad that my husband asked me to not look. I was then transferred to our regular room where I suffered through the contractions, one by one. As family started to arrive the contractions just keep getting worse. No pain meds, no epidural, nothing. When I think of cruel and unusual punishment I think of having to deliver your baby knowing that when you do, your baby will die. It is the worst experience anyone can ever endure.

June 8^th 2009 at 5:37 am I delivered Quinton. From pictures I know that he had 7 toes, and looked completely healthy from the torso down. Quinton was born as an A-Cardiac (meaning no heart) twin with TRAPS syndrome. His amniotic fluid was being pumped in to his brother and his brother would reverse it back out in to him keeping him alive and growing. For some reason the medical staff decided it was a good idea to not let me see Quinton. To put him in a mauve colored puke basin, cover him with a towel and remove him from my room. I never once was able to touch my son, kiss him, or hold him next to my heart.

Just 13 short minutes later Denton was born. At first I didn’t want to hold my son. I didn’t want to face the reality that he wasn’t going to make it. As I hear my husband ask our doctor if she can save him I hear her tell him there’s nothing they can do. Denton was born with a beating heart but his lungs weren’t developed enough to allow him to take his first breath. When I finally chose to hold my son I noticed he was perfect. He was tiny. Denton was 15 ounces.  He had 10 toes and 10 fingers. His pinkie finger was crooked just like his dad and his brother Shane’s. I could see the unibrow he was going to have….you know, just like his Dad and brother! I could see his heart pounding so hard through his chest. 17 minutes after Denton was born he passed away in my arms. That was the last time I saw him.

I never got another chance because as my sons had just died I too was fighting for my life. My blood pressure had dropped to 50/80 and I couldn’t deliver my placenta and it was starting to tear. That’s when I met Kristin and was introduced to Tiny Purpose. I remember Kristin coming in, getting really close to my face and talking to me. I remember I couldn’t talk back because I had the oxygen mask on. I was so sick. What I remember most is the smell of coffee on Kristin’s breath as she tried to comfort me and cried with me. I didn’t get a chance to interact with Kristin or be in any of her pictures she took. I was bleeding out and I had to be rushed in to surgery. I was kept in the hospital for 5 days and received 3 blood transfusions. I am so thankful for those of you who donate blood to help save the lives of people like me!

I share my story with you because sharing my story reminds me and everyone else that my sons were real. That they mattered then just as much as they matter now. That I am a different person because they existed. Sharing my story with all of you also lets you know that you aren’t alone. You aren’t alone in any of this. I wasn’t alone either!

It is because of organizations such as Tiny Purpose why I am able to stand here today and share this pain, heartache and ugly reality that so many of us have lived and are currently living. Tiny Purpose came in to my life at my most vulnerable time. Alaina, Renee and Kristin were strangers to me, yet they knew my deepest and darkest pain.

I am thankful for Tiny Purpose for so many reasons. I want to encourage you, if you haven’t, to reach out to Tiny Purpose. Let them come and invade your personal space. You won’t be sorry.

I challenge you to allow this to happen so you too, can walk through the stages of grief. I’m not going to lie, there were times I had to be dragged through these stages kicking and screaming, but I got there. Sometimes I would pitch a tent and stay in the camp of pain & guilt. Sometimes I would make great progress and other days I would slide right pack in to Anger! It was slow, it wasn’t easy, but it was worth it.

Today I would like to journey through the different stages of grief together.

The first stage of Grief is Shock and Denial. You may not want to deal with your loss because you want to avoid the pain. You may feel like you have it all under control. I promise you, that one day, sooner or later, your grief will catch up with you. It will wait and when you are least expecting it you and your grief will come face to face. It is going to be painful, it is going to hurt like hell, but I promise you, it is worth it! You are worth it!

The 2^nd stage of grief is Pain & Guilt

After the initial shock of losing Denton and Quinton wore off I found myself blaming myself for what happened. If only I had been married when I got pregnant, if only I had lost more weight before we conceived, there were too many if onlys to count. My biggest one was, and still is, that my body failed me. My body was made, by God, to conceive, carry and deliver babies. My body was supposed to do its job and it failed!

My husband once said to me, “At least you have someone to blame!” He was referring to God. Little did he know, I blamed myself!

Maybe you blame God and maybe someone has told you that you are wrong for doing so, please hear me when I tell you that you are NOT wrong! God is bigger than the blame, He hears you, He loves you, and He is grieving with you, because you are worth it!

The 3^rd stage of grief is Anger & Bargaining

 I found myself tolerating a whole lot less. My patience was worn thin and everything I had left to give was broken. I was angry. I was angry at the world and I was mad at God. Although I didn’t blame Him, I was mad at him for allowing it to happen. I was mad he didn’t perform a miracle and save my twins.

Maybe you find yourself making promises to God. Maybe you tell him you won’t ever think badly of anyone ever again if he would just bring your precious baby back. I know I did!

Relationships were damaged, some beyond repair, due to anger. Was my anger justified, absolutely! And so is yours. I challenge you to allow yourself to feel the anger. Don’t try to fight it, don’t try and cover it up. You need to be able to work through it to get through it. The ones who love you will still be there, waiting, with open arms. Because you are worth it!

As you move through the stages of the Grieving process, Stage 4 is Depression, Reflection and Loneliness. Have you ever laid in bed next to someone and felt completely alone? I took my maternity leave after Denton and Quinton were born. I wasn’t able to sleep and I was becoming more and more depressed. I was spending a lot of time alone. Whether it was alone in my thoughts and feelings or physically removing myself from situations that involved other people.

Your friends and family may think, some may even say, that you should be moving on with your life. Some may tell you that you need to get over it. It is hurtful and not true. You don’t have to get over it, and you will never get over it. You just learn to cope. When that flood of sadness hits you, please know that you are normal. That what you are feeling, is normal. But please, don’t ignore it!

This is the time in your journey that you truly understand the magnitude of your loss. And you may even realize that just because it is the worst thing in your life, it isn’t the worst thing in someone else’s. People will want to “Encourage you out” of this depression. You may want to punch them in the face, and that’s ok. This isn’t something you can be talked out of and you need to know, that is ok. That you are ok, and you will be ok. And that OK may look differently for you than it did me. Did you know that when you hurt, Jesus hurts with you? He hurts with you because to Him you are worth it!

The 5th stage of grief is referred to as the Upward Turn. This is the time when you are adjusting to your new normal. You are learning how to live with the loss of your baby. You are starting to integrate yourself back in to your old life. But you realize that your old life included your baby, so you have to create a new identity. For me, this came in the form of returning to work. I knew I was throwing myself in to the wolf den because people would start to ask questions. I was pregnant when I left, and not when I returned. Because I worked through the other parts of my journey I was able to adjust.  My depression lightened and I began to smile again. But this didn’t mean my work was done. Jesus never lets us feel complacent. You know why, because we are worth it!

Stage 6 is Reconstruction & Working Through. As your life returns back to its new normal, or your new normal, you will find yourself being more realistic about life. During this time in your journey you start seeking realistic solutions to the problems that have come because your baby is no longer here. You start to feel like your sanity has returned. This is when my husband felt like the person he fell in love with was back to her old, but new self. Maybe your marriage or relationship suffered, or ended, because the overwhelming stresses of having your baby die was too much. Maybe family relationships and friendships were broken or bent just a little too far. This is when you will decide if you want to repair them or walk away. I’m so thankful that Jesus lets us makes those decisions, because He thinks we are worth it!

Finally, we arrive at Stage 7 of the grief journey. Stage 7 is when acceptance and hope come alive. You have learned through the last 6 stages how to deal with the reality of your situation. Don’t confuse acceptance with instant happiness. You will never return to the carefree, untroubled, blindly optimistic person you once were. That person is gone. But this new person that has risen from the ashes is even more beautiful, even more strong, and even more put together. She knows how to love deeper than she ever imagined possible. She knows that it can all be taken away so she doesn’t take anything or anyone for granted. She learns to extend grace to others who may be facing similar situations, and she also learns to accept and expect grace to be given to her!

Acceptance for me was knowing that I didn’t do anything wrong. Knowing that it could have happened to anyone and being thankful I didn’t have to walk this journey alone.

You may start to dream about the future again. Maybe you start thinking of trying to have another baby. My husband and I were told to wait at least 6 months, so we waited a year before we decided to try again.

For some of you this is a real possibility, but for some this dream never comes true and you ask Jesus to put a new dream in your heart. When you think of your baby you will be able to remember them without the pain you once felt. You will still be sad, but you can smile now through the tears. Your joy will start to return. And you may start to feel guilty because you feel happy. This is normal! You are normal!

My hope rests in the fact that I know, without a doubt, that one day I will see my precious sons again. I know they are in heaven and that one day my arms will be full. Jesus tells us in John 16:22-23 that

 A woman has pain in childbirth because her time has come; but when she brings forth her child, she forgets her anguish because of her joy that a child is born into the world. 22So also you have sorrow now, but I will see you again and your hearts will rejoice, and no one will take away your joy. 23In that day you will no longer ask Me anything. Truly, truly, I tell you, whatever you ask the Father in My name, He will give you.…

Because of this, my faith in Jesus, I know my Joy will fully be restored because WE ARE WORTH IT!

My hope looks like my 2 children living at home. Shane, my son from my husband’s first marriage, is a living miracle. My hope is affirmed when I look at his face and know that he was spared by God at just 26 weeks gestation. My hope is restored when I look at my daughter Sophie, who is 6, and I see all the obstacles she has overcome to get to where she is today. See, just because Jesus gave me the opportunity to have another baby, it didn’t mean it wouldn’t come without its challenges. Soph was born with a rare genetic syndrome that we have done battle with for the last 6 years and that we will continue to battle for the rest of her life.  She is my other miracle.

Wherever you are today on your grief journey know that you aren’t alone. Take a look around, you are surrounded by people who know your pain, people who live with the same pain you feel on a day to day basis. You are surrounded by people who understand your journey. Your journey may not look like theirs, but they know and they are there for you, just as Tiny Purpose and the men and women I have met because of them have been there for me. Don’t try and do this alone, you won’t succeed. You will get discouraged. Let us, let Tiny Purpose, come in and love you, you won’t regret it!

I want to leave you with this quote:

“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.” 
― Anne Lamott

Exclusion isn't Just Another Word!

For so many of you the word exclusion doesn’t hold much weight. It is just a word. 

To me and so many others it is a word that instantly brings you to tears, anger, distrust, empathy, or all of the above. It is a word that we are battling every single day.

Exclusion: the act of shutting or keeping out :  the state of being shut or kept out

There are times when exclusion is intentional and then there are these times that creep up on you that are completely unintentional. And you are beside yourself. You are at a loss for words. Your feelings pour out of your eyes and drip off of your face until you see a puddle of emotions form on your desk. 

Today, this happened to Sophie. It wasn’t intentional but nonetheless, it left me broken. My heart is in pieces all because my daughter was at the mercy of someone else.

Sophie was supposed to go swimming with her class today. She was going to wear her adorable pink flamingo swimsuit with an orange beak coming off of her left shoulder. She was going to try out a new flotation device specifically designed for kids like Sophie who don’t know that they can’t just put their head in the water. She was going to make memories with her classmates and friends. She was going to laugh so hard today that she would feel it in her soul. Sophie was going to do all of this today until one of her teacher aids called in sick. Because of Sophie needing extra help with everything she does Sophie has to stay behind.

When I read this text this morning a flood of emotion hit me. I instantly started crying. Where was all of this coming from? I was mad at her teacher for talking me in to letting Sophie go for the past 3 days and then taking it all away from her. I was mad at the teachers aid for getting sick. But I still love her teacher! I was sad because Sophie was unintentionally being left out. I was heartbroken that Sophie can’t do things that other kids do because of how God made her.

Then the tears came. A lot of them. I couldn’t stop them. I know that it is in Sophie’s best interest for her safety to stay behind. I know that this is a decision they had to make and that it is the right decision. Just because it is right doesn’t make it any easier for me to swallow.

This is the first time that Sophie has been kept from doing things that other kids are doing. She has always been on the other field trips. She has always eaten the same snacks. She has always been on the same playground at school. Until today!

Today is different. Today will leave me wounded. Today is a reminder that this is just the beginning of so many things that Sophie won’t be able to do because she’s left at the mercy of someone else to help her. Today my heart needs a band-aid. Today is a reminder of what we are fighting so hard for.

I have been asked so many times why I am trying to raise the funds to build a Boundless Playground. This people. This right here is why. With everything that our children will be left out of, their right to play shouldn’t be one of them. We all want the same things for our children. We want them to be involved, wanted and included. We want them to have the opportunity to do the same things, make the same memories and live the same type of life. You wouldn't settle for anything less, why should we? We fight for inclusion because anything less is unacceptable. 

My tears are gone. My heart is still heavy. My love for Sophie’s teacher remains. My spirit is broken!

The Good, The Bad and The Ugly

I was reading a blog post earlier this morning and while I was reading it this sentence jumped out at me..

"We know different is more than ok, it is wonderful!" 

I struggle with that a little bit because although different is wonderful, it is also hard and ugly and not so wonderful at times and I feel it should be acknowledged and talked about.

I get it! We all want to read and hear about how grand life is. How are children are our everything and how much everything they do is just wonderful! We want to share on social media, through blogs, at church, and in our women's monthly meetings that our children are excelling at everything they do. They are right on target with development, and everything is...better than ever!

Reality check:

We are a culture who seeks pleasure and avoids pain
We want instant gratification
We don't want to hear the hard stuff, the true stuff
We would rather be lied to than spoon fed the truth

My point is this....

Yes, Sophie is a huge blessing. Yes, I believe Sophie is changing the world, one heart at a time. Yes, I see the world differently when I look at it through her eyes. Yes, I know that she was perfectly made in the image of God and who she is, is exactly who He wanted her to be.

BUT...and this is a big BUT....

I also know that Sophie being different can be hard. It can be ugly at times. It takes work. It is an emotional roller coaster. It can be stressful. I worry way more than I thought I ever would. I can't just enjoy the moments because I have to think about all the "what ifs" or the "what will her future look like?"

I believe that these are the real, raw emotions that we need to talk about. We need to embrace. If we can't talk about the hard stuff, how can we fully embrace the good stuff? If we can't be honest and share openly about the struggles raising a child with different abilities than others, how we will ever form true, genuine, lasting relationships and support systems?

Melt downs will happen, some more frequently than others.
.
Hospital stays are always just lingering in the not so distant future.

Thunderstorms will continue to happen and during those times, you just might have to hold your son in your arms reassuring him that he is going to be alright, hoping he is trusting you!

Never-ending crying episodes and heart break will continue to occur because my daughter can't tell me what hurts.

I appreciate this mother's perspective. I agree that we have a choice on what we choose to see, but I truly believe we have to recognize the hard, embrace the ugly and celebrate the good! If we can do that, we can do anything!

Caroline's Cart: Coming to a Store Near You!

1106 Days

or

3 Years, 10 days

That is how long it has been since I sent my very first email to the manager at Adrian Meijer about Caroline's Cart! I remember sitting down and delicately putting the words together to formulate the perfect email. Coming up with the subject line was the hardest part. From all of my formal education and on the job training I knew that the subject line is what prompted an individual to open the email. It had to be specific, it had to be concise, it had to be special. It was a long email introducing Tamera, the manager, to Caroline's Cart and to Sophie. It outlined in detail the specifics of the cart, what it would mean to have it and how so many people would benefit from it.

Then I shared my daughter with them. My beautiful Sophie. How she is amazing, and different, and how she is changing the world.

What I got in return was an email saying, "We will look in to it."

Are you kidding me, did they not know how much time and effort and thought went in to that email? I felt defeated.

The days and months that followed were filled with more emails, phone calls, FB posts on Meijer's wall, and people telling me to go buy the cart myself and stop trying to get someone else to get it for me. Little did they know we tried that! It's called INSURANCE LIABILITY!

You know what I got in return, Silence!

It didn't stop there. I kept talking to everyone I came in contact with about Caroline's Cart until it landed me a new name to reach out to. Ben Negron was the new name. He is an Adrian native and the current store manager in Ann Arbor. I called and spoke with him and he was elated. He made me believe we were going to make this happen together. We exchanged several emails and phone calls over the span of about a year. Then all of a sudden....Silence!

Thankfully a friend of mine who never stopped believing with me asked questions. Through one of her friends she was able to obtain the name of the VP of Retail Operations at Meijer. Janet Emerson! Once again I found myself sitting down to write the most perfect email. I shared it will all of you after I sent it. Her assistant responded right away telling me Janet would respond to be in October.

October came and Janet called.

Janet and I had a long, real, honest and raw conversation. I asked the questions I needed answered. She wasn't expecting some of them but it didn't phase her. I scheduled a follow up call with her for April, when the "cart committee" would meet again.

December rolled around and I send an email to Janet congratulating her on an award Meijer received. I wanted her to know I was paying attention.  She emailed me back and let me know that she was retiring and gave me the name of the person to contact. UGH! Defeat started to creep back in until I regained my composure.

I am so pleased to be able to sit here tonight and tell you that I received a call from Stephanie at Meijer and they have signed a contract with Technibuilt and Caroline's Cart as of March 14th. The very first store on the list....Adrian, MI!

I sobbed on the phone with Stephanie. Literally sobbed! I couldn't thank her enough. She apologized to me that it has taken 3 years to make this happen.

Every single NO I received was made right in that moment. It wasn't about my timing, it was about God's timing in our lives. It wasn't going to happen because I wanted it to, it happened because He wanted it to and I was His vessel! I am so thankful He put the desire in my heart to make me go after this because He knew He would succeed!

On top of that, Jonesville MI Walmart will also have a Caroline's Cart within a few weeks. I just received an email today telling me it was ordered. I have been in contact with the Adrian, MI Walmart as well and the manager there is Amatha Davison. She told me she would look in to ordering it. Everyone in Adrian, call her and ask! All they have to do is order it, It is already approved in their system!

My challenge to you is:

-Call every single Walmart manager in your area and ask for Caroline's Cart to be ordered. And keep asking,
-NEVER quit fighting for what you believe in. EVER. Don't take NO for an answer because it just takes one YES and that yes is right there waiting for you. It might not line up with God's timing, but it will happen!

Thank you all for fighting this fight with me. For standing in faith with me. For your prayers.

And all of this right before Sophie's 5th birthday.

Happy Birthday Sophie!

I Don't Like Today!

Today was hard. Really hard.

Sophie had her appointment to pick up her new braces that go up the calf as well as her new medical helmet. Both are needed. Both are reminders of how hard life can be.

Since October Sophie has started having a new type of seizure. She is having, what we believe, are atonic seizures. She is shaking, going limp and falling over. Hence the reason for the helmet. Some days Sophie doesn't have any, some days Sophie has upwards of 15. We have been increasing medication and introducing Kolonopin as her rescue med. When they first started we were only giving the med to her once and it stopped them. Now, we have to give it to her twice and some times the seizures stop. These types of seizures only last for 5-10 seconds but can be very dangerous due to Sophie falling. We have done a 6 hour EEG and the doctors didn't catch anything the day we had it done.

Seizures suck! Everything else Sophie deals with i can fix or make better. Seizures I can't. I watch her like a hawk almost feeling like I can't take my eyes off of her. When she is in her walker it terrifies me even more. Fear has a hold my heart and the grip is strong!

That wasn't the hard part about today though. Sophie's new white braces with hot pink straps (good work daddy) did me in. But it wasn't until we went shoe shopping that it hit me. And it hit me hard.

Sophie and I stopped in at Tilton's in Tecumseh, That's the place to get shoes. Great customer service, good quality choices for shoes and reasonably prices. I was told today by her doctor that we would need to go up about 1 shoe size.

 Ha!! Let's try 4 sizes.

Add in Extra Wide Width

Any shoes come to mind? Nope, me neither! There were no shoes for Sophie. I never would have imagined that I couldn't go in to a shoe store and walk out with a pair of shoes for my child. I felt defeated. Sad. Angry.

When we found out we were having a girl I would day dream about clothes and shoe shopping, just like I used to do with my mom. She would have the cutest clothes, in all shades of pink, and even cuter shoes. They would sparkle, but not light up unless she asked for them. She would have the cute boots and flats that are all in fashion. And when I would find the perfect Christmas Dress she would have the PERFECT PAIR of dress shoes to match.

Today those dreams were shattered. Today left me heartbroken. Today, my dreams died again!

This seems to be a reoccurring factor in our lives.

So, what do you do? For me, I put Sophie is the van and cried all the way home. I cried for the lack of options we have and will continue to have. I cried for the constant reminder that my daughter is different. I cried for all of the things she won't be able to wear or do. I cried for her future, our future. I cried because I felt like a fool for crying!

I share this because its my heart. I am not asking for sympathy or pity. Please, don't pity us. I have a beautiful blessing I call Sophie but some days are just hard.

I don't have these days often and I am thankful for that. When they do come they are hard, and they are ugly and I become extremely vulnerable.

I don't like vulnerable.

I don't like today!

Dear Shane

My son shared with me yesterday morning about girls in his class, the Freshman class, that are taking photos of themselves and sharing them with their boyfriends. You all know what pictures I am speaking of. Shane and I talked about how it is NOT good at all, how if anyone sends anything to him whatsoever that we need to know immediately.

Because of the opening he gave me, Shane and I also had the opportunity to discuss how he needs to respect girls and how the girls need to respect themselves. I have heard Shane share multiple times how so many of the girls in his class are all about trying to be "sexy" and "hot" and how they want to be desired by the boys. Really? And the boys, oh the boys! Sex is always on their minds and their hormones are raging and they don't have anyone to guide them. Because it has always been ok for boys to be "players" and to "hook up" with as many girls as possible. These 14 year old kids are in for trouble and we, as PARENTS, have failed them!

As parents I truly feel we have taken a backseat to raising our children. We want society to do it. We want the schools to hand out condoms and have the sex talk with our children. We want the police officers to be feared and respected but the moment they execute their authority to our children we want to blame them! We want celebrity hook ups and break ups define relationship statuses. We want social media to be our source of information and the place we look to get parenting advice! Seriously parents, wake the hell up and start raising your children instead of being friends with them.

Because of the choices and decisions we have made, as parents, we are now seeing those come to light in the lives of our children. Our sons have anger issues and moms fear their sons will hit them because that's what they learned from their dads or moms boyfriends. Fathers are not around and mom is working two jobs just to make ends meet. Because of that our children are home alone, no supervision. Our daughters have self image issues because we let them read Cosmo and watch all these "Reality" tv shows where all these women are fake. They have daddy issues because dad is either not in the picture or they don't want to be involved because that's moms job. Dad...show your daughter how a woman should be treated. Start with your wife! They have no idea what real beauty is and how it comes from within because we as MOMS have failed them. 

Don't get me wrong, this isn't every family, but many. This might offend you, but then again, what doesn't offend people anymore?

What I want to say to my son that I always don't know how to say:

Dear Shane,

I love you. I love how your hair starts to get long and then starts to curl on the ends. I love your sense of humor and at times I don't find you funny! I love how you love your sister and how you would do anything to protect her. I love how you have a good heart and want to do good in this world, but I do understand that you are receiving so many mixed messages on how you are supposed to be as a young man. Please, if you don't listen to anything else I have ever said to you, listen to this.

I know you notice girls. I know you notice boobs. I'm not stupid and I am very observant. I know you are confused on what is going on with your body and the bodies of the girls around you. I know you will face temptation. I know you know how your dad and I feel about sex and how we want you to wait until marriage. We have talked with you many times and shared our reasoning why we want you to wait. I know you don't like that we make sure we know the parents of any of the kids you hang out with and that we expect the same of the people that want to hang out with you.

We know you want your independence but you aren't ready to have it all at once. You still make impulsive decisions and as your mom, and dad, we have to protect you and lead and guide you. We won't let girls in your room because there isn't anything up there but a bed and your clothes. We won't let you be behind closed doors with a girl either.

 We will let you invite her over to have dinner with us at the kitchen table. We will let you sit on the couch, with NO blankets, and watch a PG 13 movie. Lame, I know but remember, we are your parents, not your friends. Don't tell her you love her because you have no idea what true love means. You can like her a lot, I hope you do.

We will drive her home, you can come with us and walk her to her door and thank her and her parents for letting her hang out with you. No, you don't need to kiss her goodnight, but you can give her a hug! Then, when we drive home, I am going to ask you how your evening was. I am going to ask if you had a nice time. I expect you to answer because in this family we have conversations. I am sure you will be texting her as soon as you are home but that texting will end at 10.

When you turn 16 and have a license there will still be rules. You will have a curfew. You will want to have your official first date and I am going to cry. I hope you pick a girl that is smart, kind, funny and nice to other people. I hope you like her because of her personality and not because you think she's "hot". Pick a girl different than the ones you are disgusted at for sharing inappropriate pictures of themselves. Shane, I hope and pray, I pray for you often, that this girl will be worth it. On this first date I hope you don't expect her to be all sexy and made up. If you ever tell her she is sexy I am going to smack you and I hope she does too. I hope she's the kind of girl that doesn't want that either. I expect that you will open and close the doors for her, pay for the dinner and a movie with money you made from a job you have. I hope that you hold her hand and are proud to be with her. I hope that she gives you butterflies just by holding her hand. After dinner, splurge for dessert. It will be worth it.

When you are at the movies on the second part of your date and the lights are off I pray you don't try to get "fresh" with her. I pray you respect her. I pray you have boundaries you set for yourself before the date and that you keep those in place. And when you are in the car driving her home I pray those boundaries are still there. Shane, you will be tempted to do things you shouldn't be doing. Resist those! It will be ok to kiss her goodnight, but don't shove your tongue down her throat and keep your hands off her boobs and her butt! Jesus is always watching. Chances are, so are her and your parents!

Sex, the dreaded three letter word that changes your life forever. Please wait! Don't give yourself to a girl when you have the woman of your dreams waiting for your wedding night. I pray she is saving herself for you as well. Shane, sex is so personal and so special. There is a huge emotional attachment to it and please don't be the guy who takes it from a girl and disrespects her with it. Be the man that waits because there is NOTHING wrong with waiting, despite what other 15 year old boys are saying and doing. You might love this girl and think the way to show her is to have sex. Honey, there are other ways to show her this. We can talk about all the different kinds of ways. Yes, I hope we do lots of talking about girls and life.

When you get invited to a party with your friends I hope you are responsible. If alcohol and drug show up please come home. The seniors might tell you it is cool and fun. I promise you it isn't cool, or fun to puke your guts out. Believe it or not, worse things can happen than puking. If you do decide to drink please call me. I will be there. No questions asked.

Lastly, please know that no matter what you do in this life there are consequences. Good and bad. We all have choices and at times we are going to make the wrong ones. We learn from those mistakes, hopefully, but I pray you don't have to make them. Your father and I love you and always will. We are always here. Always.

Love,

Mom

Fight the Good Fight

2 Timothy 4:7
I have fought the good fight, I have finished the race, I have kept the faith.


Recently, this verse has meant more to me than days before. What does fighting the good fight really mean anyway? Sometimes, I believe, it means that we are going to battle someone or something directly. Other times it might be a battle within ourselves that we fight. We either come out victorious or we come out wiser. Either way, we come out swinging! Then there is that small, still voice that is ever persistent. It reminds us daily that to do what's right, to do what is good, to do what is noble and true, that in and of itself is a battle that we must learn to conquer!

Some people are born fighters. For some, the world has turned them in to a fighter. Not necessarily the negative type either.

 I like to think of myself as a natural, partially because I was born a fighter and partially because the world has turned me in to one.  I can't remember a time in my life where I have just laid down and quit. I don't believe it is in my DNA.

I am thankful!

Yesterday "The Parents of Sophie Stegg" received a letter in the mail. It was from the Michigan Department of Community Health. My heart started to race a little.

It was a thick envelope.

But small in length.

It was from the MAIN office.

Could it be?

I honestly felt as if I were a Senior in high school all over again delaying the opening of THE envelope telling me if I was accepted or that they were sorry. Because the envelope was thick I figured it had to be good news. Then again, the State of Michigan spares no expense in the amount of paperwork they send you for absolutely everything.

As I was opening the envelope my breathing sped  up and my fingers were fumbling. I wanted so desperately for this to finally say "Congratulations! Sophie has been approved for the Children's Medical Waiver" !

But it didn't!

We have one more step and form to fill out before we can have a final acceptance for Sophie. This final piece is asking for Sophie's income and assets, which is nothing. We have prepared for this moment by putting everything that we need for Sophie (like life insurance) as a separate rider and only $5000 so it can't count against her. We have savings accounts set up, in my name, specifically for Sophie. But, it can't count against her because we have learned to fight the good fight!

I am thankful!

I can't tell you how many times I almost gave up! The first phone call that I made asking to start this process was over a year and a half ago. While on the phone with the Department of Community Mental Health I was advised that this was going to be a long process followed by the questions asking me if I was up for the process and if I really wanted to go through with it because it was taxing and long and hard! 

It was exhausting!

It was a lot of paperwork!

It was taxing!

They weren't lying!

Then, when we didn't hear anything for a year because we were "on the waiting list to apply", yes, exactly..."waiting list to apply" makes no sense to me either" Then we received a bill in the mail for $540 for the pre-screening they did to start this process! Next it was having to start the entire process over again because it had been over a year and Sophie needed to be re-scored to see if she still had a high enough score.  I was just ready yo say screw it. We will continue to pay for extra insurance for her, for her medical equipment, her medicine, he specialist and therapy visits. We are making it work as it was so I almost just said stop the process!

But I didn't!

 I fought the good fight, I am finishing the race and I have kept my faith that everything was going to work out just perfectly and as it should be. I knew in my heart that Sophie would eventually  be approved for the CWP.

If I would have called it quits just when things got hard then I would have given Sophie the biggest disservice possible. She can't fight for her needs, for her rights, but she has a mama that can! She has a daddy that can too, but he leaves this stuff to me!  Soph can't fight this fight for herself and she DEPENDS on me to do it for her. 

For that, I am blessed!

I encourage you today to fight the good fight, finish the race and keep the faith! Don't sit back and let life pass you by. If there is something out there that you want bad enough, go fight for it. Make it happen. God will bless our efforts and He is always there. He never promised us it would be easy, but He did promise us He will never leave us nor forsake us. 

All things are possible, you just have to go make it happen!