Thursday, February 11, 2010

My lil man!

On 29 October, 2002, my son Xavier “Bubba” Wooten was born weighing whopping 9 lbs and 1 ounce, 21 and 3/4 in. long. From birth he was a large child with a huge appetite. At about the time when most children start to bond with their mothers I noticed that my son was not. I talked to his doctor and she was like…”kids take their own time for things…” As time pasted Bubba was not doing the things that most would at his age and the doctor once again said… “He is just a big baby and gives him time he will get there…” That came as not much comfort because something in my heart said that my son was different. Now, let me say this different to me is not a bad thing just that he was not like my oldest daughter! Well, at a year old I enrolled him in First Steps, for the following reasons; he was not crawling or walking, he was not making eye contact, or any sounds. Bubba’s therapist helped him to crawl at 14 months and walk at 21 months. This was a long process! The sounds were not coming along or the eye contact, so I took him back to the doctors and they said that, “he will get there on his own time…” this didn’t settle well with me so I moved and changed doctors.

I took Bubba into his appointment with the new doctor and they did check up and told me to take Bubba for blood work. At first I was like… blood work what is wrong with my son? What will the blood work show? Will this help? Then, we got the call to come back about a month later because the test took that long to get the results. I went in and she said…”The results show that your son Xavier has Fragile X Syndrome. This is a genetic disorder that is just now coming known.” I had many question and she sent me and Bubba a genetic specialist and they explained it. They said that Bubba would show signs of Autism and later in life he would probably diagnosed with it. He was 2 1/2 years old when I found this out and Bubba will be 8 years old this year.

I wish that I could say that he could talk, make eye contact or communicate with out crying … but I can’t. Xavier may not able to do that and but he can do so much more! His smile brings my heart to life, his hugs are gentle and his heart is pure. I love my son, however things are not as easy as many want to try and make it to be when you have a child with a disability. I am a mother of three, married, car driving, therapy and doctor taking, full time college student, manager of my husband’s band and the strong hold for my mother and brothers. My days start before the sun comes up and ends … well some days they don’t end at all. I start the day with getting myself ready at 5 am, kids ready for school, off to school for me and home for therapy and appointments, supper, homework, baths, fussing and fighting siblings, bed time and dealing with a band and all the stresses of the members, booking and gathering things for them to become rock stars. Having a husband that is not the father of your children is a little hard, but he loves them as if they were his own. My husband is the lead guitar player and things with the band are stressful, but my son loves to get up there and play his fake guitar and make noises as his ‘daddy’ plays guitar. I wish that everything went as smooth as it sounds on paper but it is all chaos. Bedtime is the hardest because Bubba never wants to sleep and he is up off and on all night. But of all the things that I have going on in my life and all the times that I want to give up or just stop all the madness all that I must do is look into my children's eyes and I know why I must go on. Life with kids in not easy, but life with a child with special needs is hard. Xavier needs so much, cries about everything, wonders into his own little world, and is constantly being told not to do this or that. But no matter what I know that no one else can do for my son what I can and no one else will have the chance! Because at the end of the day when I am ready to break from all the madness and I am ready to walk away for a while… one thing always brings my heart and mind back into it and that is my children’s smile.

A real stuffed kind of helper! I was told by a friend and therapist to get Xavier a bear that none of the other kids can play with and one that he would like. Well, I thought to myself that this would be worth a chance because anything that will help is worth a chance even if it works for just 2 minutes a day! Well, I wanted to take him to Build a Bear Workshop… but those bears are expensive. One day we were out and I saw a Beanie Baby store and my son got excited. So we went inside and in this store we found a little reindeer that he just grabbed and he hardly lets go of it. This bear sleeps with him, goes to the doctors, therapist with him and school (if I let him). He makes noises to the bear and hugs and loves on it. I love this little bear, because of the look that he gets in his eyes as it to communicate it to the reindeer… but who really can say if he is or not in his mind.

At the end of everyday, I stop and try to remind myself of everything that I means the world to me and that one day, with any luck at all things will be a bit dull and there will be a time when I can stop breathe and think to myself that my life is dull. However, why would I ever want that to happen, because I love that my son is different and that my daughters understand that he is different and they will grow up with the knowledge that there are others in this world who are different and that maybe they are just the same, just with a special touch.

No comments:

Post a Comment