My Last Day of Therapy with Jack

The Ronald McDonald House gave us Oriole tickets again, but this time it was in a really nice box suite.  I became a true baseball fan! That is the way to watch baseball.  It was a cold, rainy night but we were nice and warm inside sitting on a leather couch stuffing our faces with all the baseball food you could think of and Chris loved the cold beer.  Jack loved the huge bowl of Cheetos, Doritos and CrackerJacks.  It was a fun night and I am glad we accepted their offer of tickets. It was a last minute thing.  The other good thing was the VIP parking.  We literally parked adjacent to the stadium.  We walked like three steps and we were sheltered from the rain.  Awesome!

So today was my last day to take Jack to therapy.  Just like all other days, I took off his coat in the waiting area...........and he was OFF!  To talk to the receptionist Priscilla, to say hello to the security guard Curtis, to run into the wall and bang his cast on the wall and say, "NUTS!"  (Thank you Greg/POP :o)).  When the OT arrived to take him back to one of the play rooms Jack yells, "bye bye MOM!"  I settled in with a magazine and periodically throughout the morning I could hear him talking and laughing.  I am excited to go home on Sunday with Savannah, but at the same time I don't want to go home unless my WHOLE family is coming with me.  I am going to miss Jack so much.  And Chris too.  It is funny, I haven't been away from Chris for more than two or three days in like twelve years!!  I will miss my boys like crazy. 

All this down time is not good for me.  Usually I don't have much time to think.  I don't often have time to let my mind wander and to really think.  Usually, if I think about something it is with a purpose, thinking about dentistry and treatment plans, and dental materials for patient care.  Or it is, when am I going to find time to clean the bathrooms, or do the laundry?  When are Chris and I ever going to get a date night?  I think about clothes for the kids, what I am going to make for dinner (or ask Chris to make), and when I will ever get into a regular workout routine again?  So the past three weeks I have had a lot of time to just think about nothing in particular.  My mind always comes back to Jack and his future and what else I can do as his mom to help him through the obstacles he has been given.

Chris and I have been reluctant to detail Jack's progress with therapy because we don't want anyone to be disappointed.  I wouldn't say we are disappointed or discouraged, but I do think we were secretly hoping for more progress by this time in the therapy timeline.  He has two more days to wear his cast, and then it comes off for five days to work with both hands working together.  Jack has made small improvements, but not the kind we saw with another little girl who was finishing the program when Jack started.  It probably really isn't fair to compare children because every child is unique and different and Jack's weakness may have been greater than hers to begin with.  We didn't see her when she started the program.  She is also a girl, and six months older than Jack.  That makes a difference as well.  I think Chris and I have already decided that Jack will need to go through this constraint program again.  We hope that our insurance will agree to cover part of the therapy like they are doing now, in a year or so.  I wish the University of Iowa would develop a constraint program so we didn't have to come all the way to Baltimore again but we will do what we have to do!

We have also have talked about making more of a therapy routine with him and create at home goals to try to achieve.  Now that Savannah is a little older I think it will be easier for Chris to work with Jack more in the toyroom.  Savannah is so content to sit on the floor and play with a basket of toys, whereas when she was younger she required more one on one attention and holding. We are hopeful they will let us bring the cast home so we can continue some constraint at home.  Jack and I have a nightly routine, that includes brushing teeth, pajamas and songs, and reading books while rocking in his chair.  Why can't I incorporate some simple therapy into his nighttime routine, and just start the routine a little earlier?  I plan on doing it.  There is more I can do for him than what I do now.  

Last night when I putting lotion on his cute little legs after his bath, I noticed that his right calf muscle is not as developed as his left.  I have noticed it in the past and always told myself it is no big deal.  For some reason though, last night it really upset me and I felt a lump in my throat.  I don't want people to be able to look at my child's legs and be able to tell that one leg looks noticeably smaller.  I don't care if that is vain.  I just don't want that for him.  This boy, Taylor, was in the constraint program and he is thirteen.  His left hand and arm were small and there was very little muscle tone.  He hadn't done a lot of therapy in his lifetime and he had a brain injury at birth that left him with left side hemiparesis.  It made me so sad to think that when Jack is a teenager and a grown man, that is how his hand and arm will likely look. 

There are also these issues with Jack's eye.  I emailed four doctors (pediatric radiologist, neurosurgeon, ophthalmalogist, and neuro-ophthalmalogist) yesterday and I asked them if they could please communicate with one another to help each other determine what is going on with Jack's eyes. His pupils are not lining up and the pediatric neuro-ophthalmalogist couldn't find anything on Jack's MRI from April 21 that would indicate a nerve or muscle problem. He thinks it may be a problem with the supporting bone from where the bone flap was removed. I am worried foremost about his vision, and the fact that they keep tip toeing around about the topic of eye surgery.  Eye surgery on Jack scares me to death.  And secondly, I am worried about his eyes and the growth of his skull and the cosmetics behind all this.  I still just get so angry.  I mean, my God, his arm, his hand, his leg his foot, worries about scoliosis of his back, his skull, his eyes, huge scars first on his head, and in a few years, his chest.  Can't my baby even have the gorgeous eyes he was meant to have?  I see pictures sometimes when the camera catches him and one eye is higher than the other, and his pupils are not lined up.  I hate those pictures and I delete them.  Those pictures make Jack look like he has special needs, and of course he looks like that now with a helmet and a cast and an eye patch and a leg and ankle brace.  But I think about the future and school age years.  After the helmet and the cranioplasty is complete. I want my child to look normal.  I want him to fit in with the crowd. I don't want people to look at him and label him a special needs child.  And I don't care if anyone thinks I am terrible for thinking these thoughts.  Because guess what?  Unless you gave birth to a perfectly healthy child and had that health snatched away from your baby, you can't say a word or even think judgemental thoughts.  I don't want to hear one criticism from anyone, because you don't know what it feels like.  People look at a child with special needs differently and limit their potential, unless they work with these special kids.  The average adult and the average child definitely do not understand the complexities of children with special needs, and neither do I fully.  I am still learning.

Gosh, maybe I am having a negative day.  I see the other children in this house, and at the KKI.  Most of the time I think Jack is lucky. I know he is lucky compared to all the other special needs children.  He is lucky to be able to walk, to be able to talk even though he is speech delayed, lucky to be able to eat normal food and support his own head, and use his left hand normally. But I guess I am selfish.  I don't want to compare Jack to special needs kids, I want to compare him to his baby sister, who passes toys from hand to hand and laughs with glee at her new found skill.  Compared to "normal" kids, Jack is not lucky.  Some days all I can think is how grateful I am that Jack is here.  Other days are like this one.  I am still angry.  Why my Jack?  I wish I could optimistic and have a positive outlook all the time but I can't.  Hopefully tomorrow will be sunny and my mood better. 

We have no plans for the evening and none really for the weekend either.  We have a tentative visitor on Saturday and we are looking forward to that.  Hope the visit all works out.  It is getting difficult to keep the kids entertained in the room and we are running out of things to do here.  Except EAT!  My gosh, that is what keeps us busy!  Dinner, followed by dessert followed by the family activity of decorating huge cookies.  Wow, more food!  I miss my treadmill!

I will continue to update Jack's progress after I leave, through whatever I hear from Chris. I made Jack a little photo album of pictures of us together, and Savannah and his bed at home and the vacuum.  All his favorite things!  Hopefully that will bring him comfort when I am gone.  And I know Chris will take such good care of him, like he always does.