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Friday, September 14, 2012

JuJu's lovely legs - an introduction to my littlest one

Meet JuJu. He was born with Caudal Regression Syndrome. Basically, my little guy is missing some of his spine, his hips are out of socket, two club feet, thin legs with very little muscle, very little rotation in the joints from his knees down, one kidney that is shaped like a pancake, and an ostomy bag.

JuJu is my miracle. Despite the odds, he continously shows people he can do anything he sets his mind to. When he was first born, I was told he wouldn't live but for a few weeks. After a few weeks, I was told maybe it would be a few months to a year. After a year, it was a few years. He's four years old now and doing just fine. The dr's told me he would never walk much less be able to use his legs in any way. As you can see above, he is standing next to the table. What you cannot see, is that he walks around it as well as to the small kitchen set (we are in a dr's waiting room here) to use the play stove. He has a wheelchair but now will soon have surgery to both of his feet to release the tendons so he can walk easier as well as straighten his club feet out and use his new crutches better. He will eventually be able to walk without the help of crutches, but only short distances.

His kidney can sometimes give us problems, but thanks to him being born so small we discovered that our kidneys are very similar (I had to be tested at a much younger age) and the possibility that he could take one of mine is an option. I'm thankful frequently that I am such a petite person and my kidneys are smaller then normal, so that one day when he needs it, one of mine will be available. Thanks also to his chinese dr that not only helps me to communicate all the medical terms to his fathers family but also looks very carefully into every single little thing (we've avoided problems twice because of his attentiveness). JuJu's very comfortable with him and talks to him on the phone to tell him how he feels when he calls to check up on him (yes, he calls our home and speaks directly to my son in between visits, something I am greatful for).

I had worried constantly about his confidence being shattered upon starting school. My little guy has such a beautiful personality that I've realized I didn't give him enough credit on being the person he is. His first year of school went wonderfully. Now little guy is in a public school this year with no other children in his class being special needs as he is. They all adore him. I've had two parents ask if he could spend afternoons at their house to play with their own children who do nothing but talk about him after school. He has no problems with his socialization and being who he is, something I absolutely adore and am thankful for.

We still however deal with the occasional rude adults that will visit upon us in stores and other places. People that will come up and ask what's wrong with him and then go on to exlaim pity over his current circumstances. I always become a little irritated at this. We are not sad for the way things are, but are absolutely thrilled that we're progressing at such an amazing rate. I wish sometimes for people to say "that's awesome!!" as opposed to "poor little guy". In meeting JuJu, you'll first notice that he's extremely happy. He'll tell you all about how his legs don't work so well but he's getting surgery soon to fix it and then also go on to tell you how much he loves to paint and play with his brothers. There is nothing pitiful in this. I never once frown when I am asked about him, but smile and try to be patient with others misunderstandings. JuJu however, always notices this. He'll ask me afterwards what is wrong with those same people. He'll say "mama, why did she look at me funny?" "why is she sad?", and I have to explain the best way possible that she's never seen legs like his and is sad because she doesn't know how to be happy about it. JuJu I think ponders on this for a while afterwards, and I always hope that he's thinking good things. If there's anything bad to it, he never shows it.

JuJu sings songs, he paints, he likes to take things apart and put them back together (much to my chagrin, so I've taken to buying him model sets in hopes that he will stop dismantling other things in the house), he plays outside in the pool, he's learned to change his own ostomy with the help of a mirror, he has his own plants and has grown his own tomatoes and basil, and has taken a hobby of collecting all things Thomas the Train and is building the isle of Sodor. He is my beautiful little partner in crime.

JuJu - you make me so happy <3

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