Monday, May 27, 2013
Life with Special needs
I remember the day I found out I was going to have a child with special needs. I sat there after getting the news staring at the book "what to expect when you are expecting", I remember thinking that I hated that book now.
Parenting is hard enough but hearing the news you are going to be faced with even more challenges and issues makes it even more stressful. There is no timeline of events. When they will smile, laugh, crawl and talk. Those things become a reminder in the second book what to expect the first 12 months and you learn to hate that book as well.
The first few months I would go back and read in them and get discouraged knowing my child was not on track. He was not even smiling by 4 months. The dreams and aspirations I had became nothing but stress and worries compiled into a book that never existed for families like mine.
Suddenly friends and family begin to change. They do not quite understand what you deal with and you get annoyed over stupid comments or the milestones their children are reaching. You begin the whole mourning process. It is completely normal. I think mourning with a special needs diagnosis is absolutely like dealing with a death. That may sound odd but I remember all the phases of it. Hearing the news, the denial. Disbelief.....There had to be a mistake. Certainly someone read a file wrong or did not see something and misdiagnosed. The research. Hours and days spent trying to make the diagnosis not as scary but finding site after site and book after book causing even more panic. I would iscolate myself from everyone so I could concentrate on what was happening. I went through depression and fear to every degree. And there are many stages to that level in itself.
Then we move to the anger part of this. Anger is the worst because it is not projected at a single person , it is a personal rage we build up to defend ourselves. I was angry with everyone, Doctors because the more I located the more I found on prevention, My close family because even though I angry and scared and removed myself into iscolation they should have been there to understand. Anger that it happened to me. I was angry for my other child that was looking forward to having another baby to play with. There would never be those typical hallmark moments where life was just normal. I was even angry at God. And that is completely understandable. I felt cheated and punished.
Bargaining and pleading along with blame was another stage. I offered myself many times to be the one to suffer. I never realized I already was in my own way. I should have done something different. I should have checked what I ate, looked at the entire pregnancy in a whole and tried to analyze where I went wrong. Maybe I should have read more about supplements. Maybe I should have realized something was wrong. What did I do to deserve this? And of course why can't I fix it? The last question is by far the hardest.
As a mother and a woman we are expected to nuture heal and be strong. When our children come to us in tears because their toy is broken we become expert at repairs. Glue guns and needles and thread by our side to make sure our children never have to feel like they are broken. Everything is fixable. It is far different with special needs. There is a defeat in that area. No patch or glue stick can bandage a missing brain part or cure a vocal cord. Although we can spend hours with therapists trying to move forward let's face it at the end of the day we feel defeated.
I never was able to move completely out of that stage. After this many years ( 13) I still find myself trying to glue pieces together and "fix" what the doctors cannot. I find it exhausting but a necessary part of my life. If I did not go through this occassionally I would not be a human.
Most parents forget to chart things after 2 years old. We are special needs parents have our childs life in a binder filled with tests and medical exams, appointments and shattered dreams. Sometimes we may even have some great milestone reached. Those are celebrated even throughout life. The first time our child can express themselves and we understand. Those moments that no one can understand that complete elation associated with it, except another parent to a special needs child.
There is another stage called "acceptance". I find that one to be the hardest. Of course I accept this happened. I see it and live it. But I simply find it hard sometimes to accept. Unlike a death and mourning There is no closure. Our childrens stories stay open. A reminder of something that happened and we live everyday. Any great breakthrough and accomplishment still has the trace of the fact that there is a delay and very hard road that was taken to get there.
I find that even though most friends I have with "normal" children instead of asking how my child is, will say "are they doing that yet?" That is especially difficult to be asked. If they are not you feel a sudden sense of disapointment in the fact they are not there quite, If they are you feel sort of let downthat the question was posed in such a demeaning manner. And then the process can start all over again. I choose to surround myself with others that fully understand my life and do not feel a need to ask questions like that. They are too hard to answer and a personal goal. One that I take in great stride and feel good about. It is strange how one simple question can put you back into stage one. But it happens all the time.
Finally There is always the awakening stage. The one we get to celebrate. Those moments when we do see some move in the developmental stages and we can breathe a little easier. Those can be short lived but ever so worth the other stages in this journey.
I do not think I take for granted one breath anymore. I check on my child throughout the night just to make sure he is still alive. I realize at any given moment some new obstacle can happen. Something I never thought would change everything becomes our new point of tackling. It is a world of stress and hope. It has many faces and stages.
I do not have to worry about the simple things like will my child marry the worng person or be faced with depression or bullying. That simply will never happen. For my child, he will never understand those stresses and that I believe may be a blessing. One less worry in life.
I feel I am lucky in some ways because I know love to a degree others cannot fathom. I understand disapointment and hurt like not many others can. I can brush off the silly things and the stares now.
I think the hardest part of life in my world is knowing these stages repeat themselves. We mourn like a death from the first breath of life our child takes after a diagnosis. A mourning of things we will never be able to celebrate or change. And a underlying fear and worry that outliving our children is a very good possibility.
I fill my days with hugs and kisses and time with my child because I live with those fears every night. I have severe panic and can often be found pacing in the house at 4 am because I live with this on my back and it never rests or allows me to fully rest.
Life is different in this world and it changes constantly. But one fact remains. It is an endless cycle to a mother and family that is touched by it and one that many people will never understand. And we learn to adapt to it's surroundings knowing nothing will ever be the same.