Friday, June 08, 2012

Special Needs Spotlight: Gracie





Hello blog readers!  My name is Jennifer. I am a wife, a mother to four children (18, 11, 7, and 5) and two adorable cats.  My oldest daughter, Gracie (7) was born with gastroschisis. Basically, her intestines formed outside of her body, not inside. At birth, my doctor lifted her out of  stomach, while the assisting doctor grabbed her intestines. It has been a long, hard, stressful, rewarding road.  One side note that I would like everyone to know, and just proves to me that God really does know what he is doing.  March 8, 2004 I suffered a horrible miscarriage at 20 weeks.  One of the lowest times of my life.  In July of that same year, I found out I was pregnant again.  Here I was still mourning the loss of one baby, while trying to prepare for another.  Gracie was born one month early.  She came to us March 8, 2005, exactly one year to the day of my miscarriage.  There are bigger things out there that may be hard for us to see, yet always have a way of working out.

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Miggy:  Can you take me back to the day your daughter Gracie was born?  Did you know beforehand about her special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 
Jennifer:  Joe and I found out Gracie had Gastroschisis at my 20 week ultrasound checkup.  The ultrasound tech would not talk to us, left the room as quickly as she could and phoned my OBGYN. We were both scared and at the time were not even sure she would make it.  I felt like I was living a bad dream all over again.

I had to have an emergency c-section w/ Miss Gracie.  I was "suppose" to deliver at Mary Bridge Children's Hospital, a hospital more equipped for Gracie's needs.  However, she had other plans, came early and I had to deliver her at my local hospital.  The good Ole Doc's took her right out of me and put her in what looked like a body bag (I was prepared for this) and off she went to Mary Bridge with Joe close behind.  I did not know if she was going to make it.  A very sad and lonely time.  At the time I did not know Gracie's fate, but knowing her now, seeing how stubborn and feisty she is, I cannot believe I was ever worried. She is a fighter!

Gracie on Left

Miggy:  Explain how Gracie’s specific special need affects your day-to-day life?  How has this changed over the years?   
Jennifer:  Gracie started her therapies (OT/PT) a few months after birth.  Because her gut was so messed up, she could not keep anything down, she skipped the crawling stage, was a very late walker, and is developmentally delayed.  She has speech delays, and has a mild form of Aspergers.  Gracie HAS to have her daily routine, and if she does not, well... then it is not good.  A quick example.  While taking her to school one day, we had to take a "detour" because they were doing road work, Gracie flipped out, right there in her car seat she knew we were not going the "right" way to school and it stressed her out, stressed her out to a point where I can never comprehend.


Miggy:  What are the biggest worries you face for Gracie?  
Jennifer:  I worry as the years go on, Gracie will compare herself to her younger sister, Sofia.  Sofia is two years younger and right on track where she needs to be.  Gracie will be in Special Ed for quite awhile.  I worry that Gracie will be teased, I worry that Gracie will not feel she is "smart."  I worry some random kid  may make fun of Gracie, and Gracie may just sock him one.

Miggy:  How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Jennifer:  Gracie has what I like to call "episodes."  She gets out of control if her routine is broken, and by "out of control" I mean full on tantrums, worse than tantrums.  There is no controlling her.  I would like for people to understand sometimes "all is not what it seems."  If you see me in the grocery store w/ Gracie, and she is having an "episode" do not think I am a bad mother because I do not know how to control my child, there are other issues going on that may not always be apparent to the naked eye.  I do not need to be approached, just a simple smile, a knowing look that tells me "I have been there" is all I need.

Miggy:  Tell us something special about Gracie.  A special story, a personality trait or just something others might not know.
Jennifer:  Even though Gracie is delayed, she is very smart in other areas.  Gracie is the kind of kid who will hear a song on the radio for the first time and have it memorized by the time the song is over. Do not be surprised if you see her on American Idol in 9-10 years.  She has a gift, just one that many people would notice if they were not paying attention.


Miggy:  What is the biggest lesson you've learned since becoming a special needs mom?   
Jennifer:  Patience!!!!!!  Gracie has taught me how to be patient.  Not everything is black and white, lots of grey areas in there.  Gracie walks to the beat of her own drum and I had to learn to adapt... I would like to think I am a better mother because of that... because of her, because by the GRACE of God, she is here with us.  I would just like to say a special thank you to Miggy for having your "Special Needs Spotlight."  I think it is a wonderful thing to bring mothers of special needs kids together, and also bring awareness to our children. Thank you!

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A big, huge thank you to Jennifer for sharing her beautiful Gracie with us.  She is a darling girl and is lucky to have such a wonderful family as well.  I love what Jennifer said about patience and how she had to adapt to Gracie... while most parents can relate, I think there is something to be said for having to  really make some out-of-the-ordinary adaptions and learn patience on a whole different level.  I have to say I'm also grateful for these spotlights where I learn about conditions I didn't even know existed.  I've had a number of spotlights like that now and I'm always grateful to have my eyes opened a little more to these rare medical conditions and the families who cope with them.  It's amazing what challenges are handed to us and it's amazing what we can overcome!  Thanks again Jennifer and hugs to that little Gracie for me.  

As always if you or someone you know would like to be part of my special needs spotlight series please email me at thislittlemiggy at gmail dot com.  And if you've sent an email and haven't heard back, please be patient and know that sometimes I just really far behind on my emails.  Life first, blog later right?  

Have a great weekend!
     

2 comments:

  1. A beautiful girl, beautiful mom, and beautiful family. I definitely understand the full on meltdowns where you wish everyone wasn't looking! She is so lucky to have you to help her. Miggy, I really look forward to your Friday posts.

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  2. My great nephew was born with this. He also came two and a half months early. Although he spent 11 weeks in Children's Hospital he hasn't had any other problems. I know that he was luckier than some. SUch a cute little girl.

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