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.