This weekend when I was out for my ladies night, my good friend Courtney and I were discussing my new sticker for my car "Welcome to Holland". I was so very excited to get this sticker and display it proudly. Its almost like a secret club that only if you live in Holland, would you get. I will share the poem with you, just click here. So its really not all that secret but I am finally coming to a place of acceptance and understanding. The interesting thing about this discussion with Court, we were comparing how it made us feel the first time we read it. For her, the poem really hit home when they told her in the delivery room that they thought her daughter had Down Syndrome. (I hope that is really accurate Courtney!) For my journey it wasn't so clear cut, the realization of Walker's delay. So instead of getting off the plane directly in Holland, we have been rowing to shore in a two man row boat and looking at the coast thinking... hmmmm... this isn't Italy after all! (you really have to read the poem to understand my reference here... so go read it, here!)
This post is really fitting for me today since we just returned from a visit with Walker's neurologist. Its been almost a year since we last visited him, mainly because I kept pushing it off. When we last met with the genetitist, he suggested we have the neurologist do a spinal tap on Walker to get blood cells which could then be tested for more rare disorders.
The problem is that Walker is still a mystery to the medical community. His MRI and all genetic testing come back normal. Dr. Brain (neurologist) explained that this happens 30 - 40% of the time. They just can't explain why a child is cognitively and physically delayed. As time goes on, there may be newer things to test for or other things may become apparent. But he did agree that there is no rush for a spinal tap, since it really wouldn't change anything that we are currently doing for him. I point blankly asked him, if he is then considered in the MR bucket (Mentally Retarded) and he replied yes. I also asked if a lower IQ would inhibit his physical capabilities and he explained yes. Walkers reflexes are good so they don't believe that there is a physical reason he is not moving on his own etc.
As I said I am moving more in the direction of acceptance and although I may have sounded matter of fact in his office, I just had to be straight forward with the questions that are lingering inside myself. Of course, with this comes more questions and worries. Like, what kind of a life will he have? What kind of a life does that mean we will have? What impact will this have on Sawyer?
I know that all parents have worries, but take it from me, when you have "normal" children your worries are where will they go to college? will they get along with other kids, when will they want to drive? etc. Once you have a child with special needs your worries are more constant, every day.... like what is the life expectancy? how can i afford to take care of them after I am gone? This worries of course may be thought about for "normal" children, but its more of an in your face situation when looking at Walker everyday. Little things, like at breakfast, "will I have to spoon feed him for the rest of his life?", or at bath time "how am I going to pick him up and put him in the tub when he is a teenager?" Its not that I want pity or a badge of honor, it just means that some days my mind is else where and I don't always want to be the bummer of the party when people ask "so how's he doing?". I think that this is a life long transition. Each day comes new challenges, and new questions or the same old ones, but I know that he is loved and he loves!
I wish I could end this blog with some spiritual or uplifting phrase about his purpose on earth or guiding forces but the truth is I still haven't quite figured that out yet. There are still more lessons from Walker that need to be learned.