Monday, August 20, 2007

Grace's Team

Last week it hit daughter has cerebral palsy. I was discussing with her PT the possibility that Grace may require a wheel chair when it is time for her to go to school. Now this is nothing new...nothing that hasn't been discussed or considered previously (we even have tried one out at mobility camp)...but for some reason, this time I cried all the way home from physical therapy. I go through the PT and OT sessions, the Botox treatments and all the other doctors' visits with an optimism...a peaceful sense of knowing that Grace is going to be ok (some may call it denial). I guess I just haven't really thought much about what exactly "OK" might look like for her. I know that many of us (if I may speak for you) believe that ok often requires full physical and mental faculties. OK may require that there are no "special needs". Well is that is the case, then I personally think none of us are OK...we all have special needs...or at least I do. Luckily Grace has a team of specialist to help...if we could all be so lucky.

There are some people that have come into our lives to assist us with Grace's special needs and I am ever so thankful for them. Sandra is Grace's Occupational Therapist (OT). Sandra comes to our house 6 times a month to see Grace and previously also came to see Mack and Sophie who have since graduated from OT. Our family loves Sandra. Mack and Sophie are always hopeful that Sandra is at the house to "play" with them and although she no longer has appointments with them she always takes time for a hug for Sophie and a chat with Mack. Sandra is also a member of our church and has watched Grace in the nursery so that Abe and I can attend church together. God has blessed us with the special lady. (See Photo 1)

Grace has physical therapy twice weekly with Jacob at Medical City. Grace loves these visits. She gets to play with new toys and try out cool equipment like the Amtryke tricycle which she loves. Jacob is so patient with Grace when she doesn't want to do certain things and becomes very headstrong. These visits have been tremendous for her. Jacob is also my sanity check when I become overwhelmed with all the equipment and therapies that are out there. (See Photos 2 & 3) Brenda is also in the picture. She was an intern during the summer. She will make a great PT!

Maureen has been with us since shortly after the kids came home from the hospital. She is our services coordinator and developmental specialist with ECI (Early Childhood Intervention). I am so thankful this organization exists and we have been so lucky to have such a great team. As you can imagine, having 3 mircropremie babies has made me a bit neurotic about many things concerning my children. Mo helps me find the help I need...doctors, books, etc. She has been wonderful!! (I cannot find our photo with Maureen so I'll have to post one later)

Below is an excerpt from Mel's (Crew's mommy) blog which I really like. If you get a chance take a look at her blog. She's very inspiring (
Recently, I came across a scripture that has given me strength found in Romans 15:1 " We then that are strong ought to bear the infirmities of the weak, and not to please ourselves". This scripture can be used in reference to physical and spiritual weakness and it does have double meaning in my life in that while I am physically strong I am not always spiritually strong. I try to be but just like you I have my days... Ironically, Crew is often the strong one. He is blessed with a strong spirit and he lifts me up.
Thanks Mel for sharing the journey with us!


Anonymous said...

Perhaps it is denial, but I prefer to think of it as "being patient in affliction and joyful in hope..." I love my Gracie and as we have discussed many times, her stubborness is what has kept her (and us) going... She is still progressing - albeit ever so slowly on some days - but progressing still. And while she might not run the fastest or throw the farthest... she will love the bestest... she already does. love, J

Mel said...

Thanks Jacolyn! Your a great mom and I look up to you a lot:)