Being a Mom of a child with Special Needs

In the beginning I don't think I really understand what it would mean for Evan to have developmental delays etc. I think we are one of the few families who did not get a doomsday report of what to expect from our child. I think this is because the neurologist originally thought Evan had a stroke and did not expect it to affect him to much. Once we got the brain malformation diagnosis he said he was more worried but did not really elaborate. I was ok with all this really because I did not know what kind of life it was going to be. But I was happy that my baby was going to be OK and not have a life threatening illness. I was kind of naive about al of it really. Perhaps it was because Evan was only about 10 months old and we did not hang around with a lot of other kids his age and the difference was not so noticeable. I think getting little emails or hearing about other friend's kids who were younger than Evan and were sitting up or crawling is when it really hit me what was going on. I remember when I was introduced to another Mom and I asked her how she weaned her child from the bottle and she said he was still drinking from a bottle. I guess I still thought that kids who were a certain age did things appropriate for that age. It did not really sink in that a child was 2 or 3 at a 6 month old level. I remember my first outing with other special needs families. It was the spaghetti wth the Infant program. I was in such desperate need for someone else who understood what I was going through. Being connected with those other moms was my saving grace really because now I could talk to someone who understood what I was going through. I am still friends with those moms I met that night and I will cherish their friendships always. Even though our kiddos are different in their specific special needs we are all on the same path in one way or another.
Anyway, fast forward 5 years and I have come quite a long way on this journey. I went through days where I was so sad, angry, mad and upset at my lot in life. That was fueled by Evan's delays and setbacks but mostly by all of the red tape and hoops we have to jump through to get what our child needs. It was fueled by stress and worry. Stress about finances and worry that I was somehow failing my other children and worry that Evan would get really sick or have a seizures. I worried so much about seizures and was so afraid of them. But I realize now that I can handle them and I am doing the best for my child in making sure he has his medication and alerting his neuro when things change or asking for another test if I feel something weird is going on. Over the past year or two I have really come to appreciate what a blessing it is that I have a child with special needs. This one little boy has changed my life so much and for the better really. He has taught me to appreciate the little things and the milestones that he works so hard to meet. To take nothing for granted especially your family. To smile and laugh and be happy no matter what is going on with you. He is such a strong little boy. He is amazing really. And the thing is that this is not just specific to Evan. I have met so many awesome kids whose spirit is just so strong and beautiful it brings tears to your eyes. These kids with special needs just touch your hearts so much. It is so nice to be able to truly "see" a child for who he/she is and not just the child in a wheelchair who must be not all there just because they can't look you in the eye or don't smile or acknowledge you when you walk in a room. They know so much more than most people give them credit for. They can teach you so much if you just take the time to slow down and learn.
So even though it is hard and frustrating to raise a child with special needs and mainly it is this way because of the fighting we have to do to get what they need not because of the child. It can be sad too. But most of all it is amazing and I am so thankful that I got this honor and even more thankful that I finally learned to appreciate it.