Friday, May 17, 2013

The special life of special needs...

I have said before just how excited I get for Sadie to come home.

Crazy excited!  My relationship with Sadie is very different from the other kids.  Not more special, but just different.  I believe it is because she will always depend on me for her care.  She will always need me.  Because of that, I always worry about her. I think that is partly why I look forward to her coming home each day.  Today was no different.

3:00 was approaching and my count down to 3:10 was underway.

One thing I look forward is the notes from Sadie's teacher in her folder.  Each morning I will write to Sadie's teachers and share with them anything that happened that evening or morning that may affect her day today.  Each day they write me back letting me know what special things they did or what therapies she had that day.  Today was no different.  The note was this;

"Sadie did have a good day.  She was vocal today.  I would make a sound and then she would make it back.  Borculo Christian School's band played for us."

So, of course I was excited to see if Sadie would do some back/forth imitating sound with me!

And she did....


video

.....and I may have teared up a bit. 

Then I read another note sent home as well.  This one was informing us that a class mate of Sadie's passed away.  And I may have teared up a bit....ok....alot.

This is reality.

These children's lives are SO much more fragile than those of my other kids' classmates.  Her life (Sadie's) is that much more delicate than our other kids.  Some of my scariest times are when she has seizures.  Will THIS seizure be the one that could ultimately take her from us?  Oh the winter months!  Fearful that the cold she has may turn into something much worse.  Or scared that the formula, that she at times throws up, she will aspirate on and cause bacterial pneumonia.   My biggest fear....losing her.

I cannot imagine the grief that this mother is dealing with right now. 

With Sadie we constantly remember to live for the here and now...we find pure JOY in the baby steps as the one shown to you here....but the frailty of her life and those of her classmates are always close to heart...even closer today.

Hug your babies tight and always look for the simple things that are miraculous.  Don't take one single moment for granted...and say some prayers for the mom's grieving today.

Thursday, May 16, 2013

Update....just to update!

This post may be coming at you only because I am avoiding the pile of laundry sitting just a few feet away from me.  I lost my motivation for today and think if I am at least doing SOMETHING (like updating the blog) then I am being successful at accomplishing at least one thing today!

This week marks the first week of all day-every day school for Sadie!

School has been going so amazingly well for her!  I have noticed that on the days that she was going all day, when she got home we would have the entire evening of alertness and engaging activity with her.  She is very happy when she comes home.  I figure it is her telling us that she is just SO happy to be home...or that she had such a good day, that she is still so happy (choosing to believe the second option). 

After trying for weeks to maintain the schedule of pulling her out of school to do therapy at Mary Free Bed, I realized it was too much for her.  We tried for three weeks and each week she would just crash in the car to therapy and we could not wake her.  As much as I wanted to finish that process out there, her therapist and I agreed, school was probably the best place for her. 

The days are quite different with her gone and I am still getting use to that.  I literally count down the minutes to 3:10 (when she gets off the bus).  I get excited at 3:00, as I know she will be home soon.  I miss her terribly!

Some of you had heard that we recently had a trip to Florida and I will share a bit of that with you.

We were recently very blessed with an opportunity to go to Disney.  This trip has been months in the planning and we had kept it very quiet for a few reasons.

This was a "wish trip" for Sadie. This trip was provided to us by an amazing organization in Michigan called the Rainbow Connection.  When we were told that Sadie was eligible for a Wish, we were surprised as we thought wishes were granted to children with terminal illness...However, that is not true.  Wishes are granted to children with life threatening conditions, which Sadie actually has several.  Wishes are granted not just for the child...but for the child's family.

Back in January we met with the Wish Coordinator from Rainbow Connection...we had no expectations and were basically open to what she thought would be best for Sadie's wish.  We had no ideas.  When she presented the Disney idea to us, we first said no.  It was too much and the thought of traveling that far away with Sadie seemed overwhelming to me.  However, the more she spoke about it, and the accommodations that would/could be made for Sadie, the more possible the idea seemed.

When we were considering this opportunity, our thoughts were on all our kids...how amazing they have been. How amazing they ARE. Our thoughts were on Sadie. She has endured more than any adult should in a life time in her three short years. Our thoughts were on us...just how much we needed a break. Our thoughts were on our FAMILY and an opportunity to spend time away from our everyday "normal" lives...with no influences of family, friends, neighbors, community...just us.

We were blessed to stay at an amazing organization called Give Kids the World, which is a place that only children with "wishes" could stay.  There was no embarrassment with pulling out Sadie's feeding supplies and tube feeding here where ever/whenever.  There was no heads turning at us when Sadie was making her noises.  There were so so many families there that were just like us.  It wasn't pitying looks or silly/naive/ignorant comments.  We were able to just be.

We spent a week eating breakfast, lunch and dinner together.  A week of people just loving not only on Sadie, but Ryleigh, Kobe and Nathan too!  A week building a lifetime of happy memories together.  No therapy, no doctors, no AFO's, work...just us.

As I said in a previous post, I aspire to take more pictures and we have HUNDREDS from this week!!  I will next hopefully be able to actually DO something with them and create a photo album!





 
 
THIS JUST IN!!!  As I am typing this we FINALLY got the call that Sadie's Wheel Chair has been DELIVERED!! WOOOO HOOOO!!  I should be getting a call SOON from Mary Free Bed to get fitted for her seat and she will be rollin'!
 
And in other news;  come this fall you may see me rollin' in this!  As all kids are in school, it has left me wondering what I will do now?  A bit ago the school our kids go to (Allendale Christian) was looking to hire a new bus driver.  For those who know me, I have actually said that I aspired to be a bus driver.  But thought it an unattainable dream.  Dreams do come true!  I am taking my driving test next week Thursday (say some prayers please...).  This opportunity was just another answer to prayer for us.  It is hard to figure out "work" with Sadie. I desire to work and our financial situation could also stand the help.  However, it is hard to commit to a 9-5 job, as she does have alot of appointments.  Then we also have to consider summer vacation, Christmas break and spring break daycare issues.  It is too much to expect Ryleigh watch all the kids on her own.  So, this is an opportunity to work (for a place we LOVE) and have the same schedule as my kids and allow me the day time to make all of Sadie's appointments.  WIN-WIN!
 
 
 
And for more exciting things coming up....We are SUPER OVER THE MOON excited that in June Johnbull and Stacey Omorefe and three of their kids will be coming and staying with us!!  This is our Ghana family!  Johnbull and Stacey are the amazing couple that started and run City of Refuge Ministry in Ghana and said YES to taking care of our precious Sadie from when she left the hospital until we came to take her home.  While they are here, we will be hosting a Feast for Freedom and you will all have the opportunity to be treated to an authentic Ghanaian meal and hear more about their ministry and ways that YOU (yes, Y-O-U) can even get involved!!  More on this to come....