"You know your son has Cerebral Palsy, Right? Lets just face the facts and deal with this."
I sat with Jackson in my lap as he played with his feet, I could feel the life drain from my body.
"Has he ever been diagnosed before?"
"No."
''Well let me do the honors. It does not change anything, it's just a diagnosis."
"OK."
What I wanted to say was... "Who are you? you have no Idea who my son is, and what he has been through. You are not God, and you have no right to say that my sweet little boy is ''damaged!'' Instead I continued to stair this lady in the eyes, just as expressionless as she was.
Today we went to see the Developmental Pediatrics team so Jackson could be evaluated for a research study he has been in since birth. They wanted to give him the Bayley Exam, which is a test performed by a Psychologist to see how your child is Developing. Jackson seemed to do very well. All they really did was play with toys, and try to get him to imitate sounds. After the exam we headed to the next room for Jackson's Neurology Evaluation. It's hard to fail one of these, and he did great tracking the lights, and responding to tickling on the feet. Then came the ''hard'' part... answering questions.
''Is your child able to run up the stairs using each foot in coordination with one another?"
"No."
''Can your child jump up and down for 5 seconds."
''No."
''Can your child walk a straight line"
"No."
"Can your child walk with assistance."
"No."
''Does your child sit for longer than 10 minutes at a time."
"No."
This questioner went on for a total of 100 questions...
Jackson was getting a bit squirmy, so I put him in his stroller while the NNP (neonatal nurse practitioner) went over the questioner." She then came over and checked Jackson's reflexes, muscle tone, and tracking skills once again.
"Cognitively Jackson is testing at or above his adjusted age of 19 months. Fine motor is around 12 months, gross motor 7 months, Oral motor- not applicable."
"Okay."
All I could fathom to say was 'Okay?' I knew this was coming... just not today. I thought I had a little more time to accept reality, and live without the diagnosis for just a little bit longer. I do know that this is most likely a very mild form of CP, it still is a brain injury (from being extremely premature). I have prayed for miracles before, and God has prevailed. I am not pessimistic about Jackson's quality of life because he is one happy boy! I do know that God is in complete control and can see my heart, and mend it. So now we begin life with CP. What does that mean? It means that God was, is, and always will be in control.
I let the tears fall as we walked out the hospital doors. We had just visited baby Jillian in the ICU who is another amazing child that went through major surgery yesterday. There is something about Riley that bonds every patient, parent, family member, or friend... pain. Everyone there is experiencing pain of some way, weather it be physically, emotionally, or spiritually, every single person is in pain.I let the tears fall not because I was sad or angry, but because I would give anything to take the place of these children who have to endure more than anyone will ever really know.
I am reminded that I can do ALL things through Christ who gives me strength. Peace Be with You.
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Here is a little Poem that a friend shared with me...
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
