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.
Tuesday, April 30, 2013
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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