Saturday, February 22, 2014

"Doing it for Gracie!"

After last weeks post, I received a question about how Grace is doing as it relates to the Up's development chart (milestones) and what it's like raising her.  It's a great question, but the truth is, I don't have a clue where Grace is on the Up's development chart because we have sort of subconsciously chosen not to care much about it since she's been forming her own uncharted, Divinely devised path and survival has been our main focus thus far.  Since she's spent a good bit of her life either sedated, laying in a hospital bed, or on sternal precautions (where she's not suppose to lay on her tummy, be picked up under the arms, etc), she certainly has some ground to make up as it relates to her development.  For instance, she was army crawling before her 3rd surgery in early October, but she barely started army crawling comfortably again about 2 weeks ago (now we call her a little salamander because she can shimmy across the floor so fast).  She isn't anywhere near trying to pull up or walk, but instead she's working on crawling on all fours versus an army crawl, going from sitting to laying on her tummy by shifting her weight to her side and then on to her tummy (instead of going through the center splits, which she prefers to do and she does it so fast, it's hard to even catch her doing it :-), and going from laying on her tummy to pushing herself up to a sitting position.  Grace sees 3 different therapists 3-4 times per month each and we are now adding in Physical Therapy for which we are really excited about. She has only had an evaluation with the guy who will be her PT, but he has a lot of great strategies as it relates to retraining Grace's mind to believe that she can do certain things (crawl on all fours versus army crawl, etc) that are unfamiliar, he pushes her pretty hard and Grace doesn't fuss at him when he does… so far at least (that's super exciting and a huge praise).  During his evaluation, he was very impressed with her muscle strength, how good she looks, and how well she is thriving after ALL that she has been through.  It's hard to wrap our minds around the reality of this, but we set her goal of walking for 6 months from now, she will be exactly 2 years old then.  Children with Up's (that haven't had 5 open heart surgeries) typically walk around two years old, but there's no telling what Gracie Doo has in store for us :-).

That leads me to the prayer request that I have been talking about…  With Abigail and Andrew we pray each year about what we should do with them for school about their teachers, etc.  We have quickly learned that when you have a child with special needs, the stakes are that much higher and more complex as we pray through the best age and place to begin some sort of "school" where she can be around other children her age, learn to follow directions, etc.  Shortly after learning about Grace's Up's diagnosis, we heard about the The Rise School.  A week after Grace was born we did a tour of the school, so that we could get her on the waiting list and from the moment we walked through the front door we knew there was something very special about that school.  The school is made up of 70% children with Up's and 30% typical kids, they have one teacher and two aids in every class (one of the helpers is a special needs adult, often times with Down's Syndrome), they receive all of their therapies while at school, and they have created an environment that truly maximizes the learning ability of the amazing children they serve.  The school goes up until 5 years old and 98% of their students go on to attend a fully integrated classroom.  I really can't say enough great things about the school, however, there are a couple of things that make the decision to send Grace there a little more difficult.  First of all, it's not cheap (and I have seen with my own eyes why…  it is truly amazing), it costs $1,700 per month (without any financial aid), they go to school year round (with a few weeks at a time off her and there), and it is about 35 minutes from our house.  It happens to be located right outside the Medical Center, where I work, so it wouldn't be terribly inconvenient to get her to school everyday, but we would have to come up with a plan for pick up since she would get out of school around 2:30 pm.  When I first heard about and saw The Rise School, I was DETERMINED that Grace would go there, but it didn't take long for God to work on my heart and reveal to me that my motives were a little earthly.  You see, my reason for wanting her to go there so badly was so she could be the smartest child with Up's possible or as least Up's as possible.  Once I was reminded that Grace's story is already written, God knows exactly how smart she is going to be (and everything else about her too), I realized that there are many other factors to this decision that are just as important as Grace's education (how it is going to impact our family as a whole being stretched thin financially, Grace still being in school when the big kids are on Summer break, the logistics of getting her to and from school, etc).  We had great peace about the possibility of sending Grace to the same preschool that Abby and Andrew have gone too.  While they haven't ever had a child with Up's there, they are more than willing to welcome Grace, we know and trust the school a lot, and their philosophy on early childhood education (learning through play, etc) is very similar to The Rise School.  THEN…  a few months ago David and I have felt a pull back towards The Rise School for a couple of key reasons, since Grace has been set back so much with her surgery history, the fact that The Rise School is highly accredited and recognized for the cleanly environment that they provide (that makes this germaphobe momma smile :-), and it seems like we have more easily thought through the logistics component (there may be car pooling options, etc).  Just like we do with the big kids, we pray through there education situation one year at a time, therefore, we are praying that God would make His will clear for Grace's "education" this next school year clear.  The first step is waiting to find out if there is even a spot for Grace at The Rise School, which we won't know until some time in March (we had to pass up our spot last year because Grace was in the thick of surgeries and unable to attend school at the time), apply for financial aid, and in the mean time we will register her at the preschool that A and A have gone to and trust that God will make His will clear to us.

Here is where you, Village, come in, will you please pray that God's will for Grace's education would be clear to us and that we would have peace and excitement about whatever His will is?

I apologize for being so long winded...  here is a quick look at what we did this morning!
We had a Fun Run Fundraiser for Abigail's Elementary School!  We all did the one mile race, except Abigail and David ran fast while Andrew, Grace, and I took it a little slower.  I couldn't have been more proud of Abby, she pushed it so hard in an effort to finish first in her grade level (which I think she did, if not second) that she crossed the finish line with tears in her eyes because she had a side ache, was loosing steam, and she wanted to finish strong for Gracie, but she never once complained.  Andrew, like last year, got a lift a few times during the race, but he sprinted to the finish line yelling "I'm doing it for Gracie!"  Grace was happy to be along for the ride with her own bib number and all!  It was so sweet to see what a little celebrity Grace was as we waited for the race to start with kids gathered all around her stroller doting over her!  

Abby and David waiting for the 1st grade gun to go off to start the race...

Abby and Andrew high five each other as they passed each other on the course...

Andrew "doing it for Gracie!"

Post race photo…

Village, hope you have a blessed weekend!  (((HUGE HUGS)))

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