Sister

Several weeks ago, Jim and I were discussing when we should start incorporating Joba into some of the things we do with Mattie. Joba knows Mattie goes to a lot of doctors appointments and does “exercises”. He has even seen several OT and PT sessions. Every time we go to Gainesville for ABM we leave him home with family, so he knows we go “far away to do Mattie’s exercises”. He never seems to care… until he starts acting out in a way that makes me think he might be a little jealous of the attention Mattie gets.

Joba does not realize that there is anything wrong with Mattie. She is his sister and he “helps her learn to do the things she can’t do”. If we are doing exercises he will lie down next to her and say “look Mattie, this is how you do it”. It is very cute to watch. Lately Joba has been interacting with her a lot more and she is constantly watching him. He, like any boy and brother, will have his moments of being rough but most of the time he is very sweet to her. I love to see them interacting together. It makes my heart smile.

We are not prepared yet for how we will explain to him that Mattie has cerebral palsy, I think he will start to understand it in the coming year as he sees babies/kids younger than Mattie doing things that she can not do. We have bought several books about having a sibling with a disability to read to him when we think he is ready. We also decided to take him to Gainesville the next time we go so he can see what we really do up there. I want to be able to include him in “Mattie’s World” since it takes up so much of our free time. I hate that we break up our family to make these weekend trips. It will probably be a disaster with 2 kids and us in a small hotel room, but I want to start including him in what has become a big part of all our lives.

So here is a little bit about Joba Roo – The Rooiest Roo of all the Roo’s

The other night after I put Mattie to sleep, I told Joba that we had a special task to do and he had to sit like a big boy at my desk and answer some questions about him and Mattie. He was excited about it and after we were done, he wanted to do it again 🙂

20 Questions with Joba

What is your name? J-O-B-A (he spells it out)
How old are you? 3
What is your favorite color? Pink (we keep thinking he will grow out of this…)
What is your favorite toy? Buzz and Woody
What is your favorite food? Carrots
What is your favorite TV Show / Movie? Buzz and Woody (AKA Toy Story)
What is your favorite animal? Moose’s (????) and Ladybugs
What is your favorite song? ABC’s
What is your favorite book? Pinocchio
Who is your best friend? Giovanni and Sebastian
What is your favorite thing to do outside? Play Baseball
What is the hardest thing you learned to do? Clean Up
Who do you pray for at night? Giovanni and Sebastian (usually this is Uncle Bill)
What is one special thing about you? I don’t know, let try another one
Who is your Sister? Mattie
Do you love her? (nods his head)
How do you help Mattie learn? I help her play
What do you like the best about Mattie? (no answer)
Do you want another brother or sister? Yes, a sister!
What is your favorite thing to do with Mattie? Lay down with her and play

For the actual audio of this “interview” and Joba singing the ABC’s CLICK HERE.

To see a FANTASTIC slideshow movie of Joba and Mattie CLICK HERE.

Moving Into Year 2

At her eye appt last week, a lady approached me asking me how old Mattie was. When I told her that she just turned one, she was shocked and said “she is so little”. I for some reason felt the need to defend Mattie and said “she was born 9 weeks early” and turned around. This week at pedi office we go in to have Mattie weighed. As we lay her down on the scale, the nurse says “you can sit her up”. Aghhhhhhh!!! My response “she does not sit up yet”. The nurse was surprised. It was awkward for everyone.

This is going to be an interesting year to say the least. Most of Mattie’s delays, in the past, would go unnoticed since she was a “baby” but now that she is a toddler and not doing the “normal” things a toddler can do, the questions are starting, the stares are here, and my niceness is starting to waiver. We are shifting from Mattie the baby to Mattie the disabled toddler.

I can’t tell you the amount of times that people have told us that Mattie will be just fine. They say it with such ease, so matter-a-fact, that they believe it. As much as I want to believe that Mattie will be just fine, her difficulties are real. They are not going away. It is not as easy as just saying she is ok, because she is not and that is the reality of our situation.

We can’t take Mattie to the grocery store unless we push her in a stroller since she cant sit up in a cart. Well, pushing a stroller and a cart is not really possible with 2 hands! We have to bring our own high chair to restaurants since she cant sit up in a normal high chair. We have a stroller that works for now, but may need a stroller/wheelchair in the near future if she starts to outgrow this one. Her bath is ridiculous! We still bathe her in an infant bath tub. I have yet to find a good non-disabled bath seat that will support her and make her feel secure. It goes on and on and on.

It is taking some time to process this. Every time I see an adult with CP I can’t help but take notice. I know… it is exactly what I am complaining about. It is just that I can’t help thinking, is that how Mattie will walk or is that how she will get around? I want to give these people a hug and ask them about their life experiences. Are they happy? Because in the end all I want is for Mattie to be happy.

The question of the hour: at what point will Mattie reach her full potential? Do we try the remainder of her life to keep pushing her or at some point are we going to have to accept that she will have limitations? I have said in the past that I will not stop until Mattie can run a marathon with her dad… I hope and pray that this will be a reality.