Well. It's been quite a while coming, but (in a nut-shell) after delays reaching motor milestones, funny things happening with his feet and legs, and general muscle weakness and instability, our gorgeous little BoyWonder has been diagnosed at 18 months old with mild Cerebral Palsy. We are so blessed that it is only mild, and that he will be able to walk, run and do whatever he sets his mind to. He'll just need a bit more work, effort and determination to get there. It mainly affects his right leg and foot, and core/trunk muscles. As I said, we are so grateful for our little guy, and that he was not more severely affected. He is happy and healthy - and what more could a parent ask for?
Basically CP is caused by damage to the brain, which affects the control of the central nervous system, which affects the control of muscle tone, which affects the ability to move muscles and limbs in certain ways/or to control the movement that does occur. The way one of the therapists described it to me was that we have nerve pathways that excite our muscles, and nerve pathways that depress our muscles. In the type of CP BoyWonder has, these pathways get mixed up and are activated at the wrong times because of damage that has occurred in the brain. In the not too distant future he will have an MRI to locate exactly where the damage occurred, and to possibly find out if it happened before he was born, or during his birth.
He is having physical therapy to help him with his strength, balance and muscle control. At today's session we worked on standing, crouching and stepping behind the push walker. He is not yet able to stand without support or without leaning on something, but is getting soooo very close! He gets tired very quickly from having to exert more effort to get around, but he is so determined and will be up and running before we know it. He loves physio- he has the therapist all to himself and totally thrives on the attention and 'play'.
So the last little while has been rather busy with appointments, therapy, paperwork and processing all this as a family. And it will continue to be busy for a while to come, but we have information now, and support, and goals; and these three things are crucial to making this journey SO much smoother, way less daunting, and not so overwhelming.
Ok, now to the soppy stuff. You know I can't help it. I just want to say that I truly believe this little guy will grow to be a better person; a better man for the little challenges he will face. My prayer is that he will have an inner strength, and an understanding and compassion for others who are in need. Now the last thing I want to do is 'bible bash', but I do want to remember these verses which have jumped out at me over the past week. Romans 4:18 talks about a guy called Abraham. It says something along the lines of when Abraham was feeling hopeless, like there was 'no way, fat chance' of something happening that was supposed to, that
'...he believed anyway, deciding to live his life not on the basis of what he saw he couldn't do, but on what God said he would do.'
I love that! I love that it says he 'decided'. It was a choice about how he would live. We are not defined by what we can or cannot do, our abilities or disabilities. We are all made exactly the way we were meant to be, and we are defined by what is in our heart.
Ok ok ...please just one more?! 1 Thess
5:18 says
,
''In everything give thanks'.
Oh yeah, I am so thankful. Thankful that after experiencing trauma to his brain, it could have been SO much worse, but it wasn't. Thankful for a little dude who won't let a single person pass him in the grocery isle without saying 'hi'. Thankful that he loves to act like a clown and make people laugh. Thankful that he is so determined to be independent that he 'wears' his breakfast every morning. Thankful for his wet sloppy kisses and ambush raspberries. Thankful for the wonderfully kind and caring people around us who we can share both our burdens and celebrations with. Thankful for where we have been, and for where we will go.
Alright...sop over. Can I just mention that one of the first things I 'googled' after hearing the diagnoses was not medical websites and definitions and scientific info (although I did hit up Dr. Google before long!). I looked for blogs, written by mums, about their child with CP. I wanted to know about their story. So if you happen to have come across this post, searching for someone who is/has been in a similar situation, and you want to have a 'chat' please feel free to email me, I'd love to hear your story.
***News just in...BoyWonder just did his first pee in the potty! He even told us he needed to do it! 'What a maverlously advanced child that BoyWonder must be' I hear you all say ;-) Sounding like a proud parent much?
Some pics to finish off...
(BoyWonder's photos all remind me of the hi-de-ho neighbour Wilson W. Wilson from Home Improvement. Sorry, but his face is just too gorgeous to unleash on the world.)
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We purchased this great vinyl 'blackboard' on ebay to encourage his standing. It's starting to lose its stick a little, but lots of fun all the same! |
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Backwards is the new forwards, didn't you hear? |
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Action shot - for all the speed demons out there. He gets that from his father. | |
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Does anyone else wonder, if you surrounded him by mirrors, if his hair might be able to illuminate the entire room? No? Maybe just me.