Special Needs! It is a common term these days. The official definition according to Google is:
particular educational requirements resulting from learning difficulties, physical disability, or emotional and behavioral difficulties. From all that I read,
special needs is basically used as a
noun describing children with
different abilities. When I was a child, "special needs" was not even a term. Kids were called,
slow, not right or retarded. They were not terms meant to be mean, they were just very literally, what people saw and put words to. The only special child I ever knew growing up was
Sammy. Later on I knew kids that couldn't read well who were defined as slow, but knowing them as adults they later learned they were dyslexic and have become quite successful, but Sammy was the only one I knew who was even comparable to my David.
Over the years, many things have been said about David and myself. I have been called
strong and even
amazing (whats so amazing about a mom taking care of her kid?) and David has been called everything from a
miracle to a
burden. Harsh? Yes, but if you have a kid like David, you learn to roll with the punches and ignore both rudeness and ignorance. As the saying goes....
"Haters gonna hate!" However, whether you view David as God's greatest miracle or both a physical and financial burden, if a special child is not part of your everyday world you simply don't have the facts either way. I have some amazing friends who love my entire family and would do absolutely anything for David.....
except be in a room alone with him for more than five minutes. They love him and if he is with me, they talk to him and play with him, but the second they might have to be alone with him, they go into full on panic mode. This is not a negative reflection on them, it is simply a fact. If I am there, then anything happens and they are simply a background support for me. However, if they are alone with him and anything happens (
seizure, the need for a diaper change or a need for communication) and they fall apart. This is why it is very difficult for me to find people to watch him. Thank God that there are a couple of people out there who know David well enough to have my back in an emergency, but for the most part.....there are very few that feel absolutely comfortable with David and who know and understand his needs. So to most of the world, I am sure that to some extent if people are dead honest, they do view David as more of a burden than a miracle simply because they fear him and his needs.
For those that wonder
"how" I do it daily, I simply reply.....
"How could I not?" David is my child and I signed on to be his mother, just like all parents do. I didn't say I would be his parent a
s long as he was perfect 24/7. I signed on to be his mom through anything....the good, the bad and sometimes even the heartbreaking. I do it daily just like any mom takes care of their kid daily. The only difference is that I have to take care of David differently at times. It doesn't make me strong or amazing. It simply makes me
a mom!
When David was born, having a special kid was not even on my radar. It is only natural for parents to hope and pray for a happy and healthy child. When the unthinkable happens though and the child comes early and he is so small and so helpless and you know that you might very well lose him, then all you do is hold on for dear life and pray that his life is spared. You pray for his healing and most of all you pray that regardless of what his health issues might be, that you have a chance to be his mother. I literally spent days sitting in a chair by Davids bed, rosary in hand and praying hours on end. I would doze off in my chair during a prayer, wake up and start again where I left off. It was the very definition of
flooding heaven with prayers and I imagined angels and saints surrounding my little two pound son, joining me in prayer and giving his little body the strength to fight. I remember time and again thinking that I didn't care what health issues my son had, I knew we could get through them. I just wanted to be able to hold him, snuggle him, kiss him and take him home. At the time though, I couldn't do any of those things. All I could do was pray.
Once we got David home, Tim and I knew that
together, whatever life threw at us from this point on, we could take it. David was beautiful, healthy (
despite his chronic issues) and happy. God had answered our prayers and we were ready to take on the world. When Tim died suddenly a few months later, my world turned inside out. I had never signed on to do
everything all by myself, but I did sign on to be a parent for better or worse. Losing my spouse did not mean I could just cut my losses and walk away......
nor did I want to. My kids were all that I had left.
Being a single parent is never easy in the best of situations. There is so much that is shared co-parenting and when one is gone, you become both mother and father and everything falls upon you and only you. With a special needs child, it is slightly more difficult. With each knew diagnosis or change in condition such as seizures, you are alone and have to educate yourself, prepare yourself and make his world the best place it can be despite his issues. It is no different than if you have a child with cancer or any other sickness or disease, except in Davids case, he is chronic and therefore his disabilities will likely last a lifetime. However, we as parents take the mountains along with the mole hills in stride and muddle through.
Someone ask me the other day, since I had non-special needs kids and David, what the differences were. I found it an intriguing question as no one has ever asked me that before. The things that most on the outside looking in would view as difficult where David is concerned really aren't that bad. David is 13 and he is incontinent. This is not particularly one of the more fun aspects of life with David, but it is not horrible either. As a parent you can get used to diaper changes, but at 13 when he shows interest in actually using the toilet, the excitement for all involved is beyond words. Sometimes when we have average need kids and more than one, the milestones such as potty training are exciting but after the second or third child, they become more of a
hurry up and move on rather than a celebration. With David though, not only is he hitting a milestone, but I know beyond a doubt that he also understands that milestone and when you are told early on he might never understand these kind of things, well.....
it is just amazing! Also, as a mother with other kids, you learn early on not to dwell on the differences between special needs and average needs. Your kids are just
your kids, each individuals in their own right and none viewed as greater than the others. In my house, only society has ever judged David differently, Z and I never have.
I honestly think that no families are more blessed than those with a special child. These kids come into this world fighting and their spirit is contagious. Families learn the importance of love, compassion, kindness and selflessness. In return they gain unconditional love, complete acceptance and a new understanding of what is actually important in this world and what isn't. In our house, selfishness and ego are checked at the door because once through that door.....David has our heart and there is nothing we wouldn't do for him.
Is having a special child easy? Absolutely not! When you have to deal with doctors, insurance, hospitals, ER's, schools, staff and judgmental people that come in the form of both family and friends....at times it is stressful. Then do all of this by yourself with no money....... and it is exhausting. The upside though, is that I wouldn't trade a second of these last 13 years, because life with
the Incredible Mr. David has made me a better mother, a better person and it has made my family strong. It has given me a voice I never had and it has made me realize that God makes no mistakes. David is a gift and I thank God each and every day that He chose us. As I said....it isn't easy, but then again......the best things in life never are.
