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.

Visiting Santa at the Wishing Place (Make A Wish)

Evan in front of the Santa Parade Bus

The set up at Make A Wish

We all clapped when Santa came in, Evan was so excited.

This is the Santa who was in the Macy's Santa parade in New York City

Evan was listening so well to Santa tell the story of the Night Before Christmas, Santa acted the whole thing out.

Santa brought two elves Holly Berry and Pepper Mint

Reading Evan's letter that I wrote for him. He asked for trains, horses, cars and sharks.

It was so sweet I almost cried

Evan's picture with Santa

Putting Evan on his lap

Santa giving Evan a hug

This was such an awesome Santa, he was so animated and real.

Asking Evan if he had been a good boy this year.

He cooperated. It was so fun to do this with our friends Todd and Tyler

Evan was being a stinker when I asked him to take a pic with Tyler and Todd

Evan's Hospital Stay 11/3/10 thru 11/6/10

Evan did great the weekend he came home but by Tuesday he was sleeping so much almost the whole day. We ended up taking him to the ER that night because he had not had a wet diaper in 2 days and he was just so sleepy. They hydrated him and took tests and claimed he was fine and sent us home. The next day he had an appt at his neurologists office, the neurologist was so worried that he had the pediatrician come in and talk to me about Evan's feedings and the gtube. She took a culture of his gtube sight because it was red and oozing. I noticed then that his tummy was a little puffy but did not really think anything of it. So fast forward to that evening and his tummy is really distended so we call the surgeons office and run off to the ER again with Evan. This time we waited over 2 hours before we talked to the staff again and told them that the surgeon had told us to come in to be admitted for IV antibiotics. They called the Dr., and she did a direct admit so we finally got up to the room.
Evan was also constipated so he had an enema later that night as well. He pooped in the early morning so the nurse and I cleaned him up. This was a shorter stay as we were able to go home on Saturday. Evan did not have any seizures while we were in the hospital and as of the writing of this post (12/2/10) he has not had any. That is so awesome. So Evan had a staph infection at his GT site which is one reason his tummy was full, plus he was really constipated too. I am so glad we followed our gut and took him in to the ER.

Halloween 2010

The whole crew- 4 families of kids


Evan in his Woody from Toy Story Costume that I made him. I made a size medium but I should have made him a large as it is a little small. Good thing he only had to wear it for one night.

Not the best pic but this is Evan and his buddy Camden. Another friend Connor was there too but he was too busy running around to sit still for a pic.


Gabe wanted a picture of Evan shooting him.

Earlier in the day we were carving pumpkins

Gabriel did 2 on his own

Evan helped Daddy with one

Gabe is becoming a master pumpkin cleaner

We had a great Halloween.