Aaron

This is Aaron Charles, his middle name is after my grandfather. He was born September 22,2000. He weighed 7lbs. 4oz, and was only 19.5 inches, this is very small compared to my other children. I knew from the beginning something was "different" about this child. My original fear was miscarriage (I never had one, or the fear of one prior to this pregnancy), after his birth I feared crib death. Irrationality is not usually what I'm about, so I thought I was crazy and told no one of my fears. Aaron was the perfect baby. Rarely did he cry, and he slept alot. At 1 month of age, he was diagnosed with failure to thrive. He weighed his birth weight! He was also diagnosed with a poor suck reflex and low muscle tone. We switched him to a bottle and tried all different types of nipples, and he gained plenty of weight. By 3 months I was worried that he had never attempted to roll over. By 6 months I was REALLY worried that he had not rolled over! His first neurologist visit was at 9 months. We were originally told that by the time he was 3 years, you wouldn't be able to tell the difference between Aaron and any other 3 year old. Well, that doctor was way off! Basically, we still see lots of specialists and therapists. We have no technical diagnoses for him. He has low muscle tone that affects all of his body (mouth included), so speech is delayed (but has come a long way) and he likes to chew on things. He has had multiple brain MRI's that have shown the cerebellar portion of his brain is permantly damaged (affects speech, tremors and balance) and he has a degree of mental retardation. He lacks the "common sense" ability and will wonder off or in the middle of a busy street without fear. He does know all his letters and sounds and is reading sight words. I've learned he memorizes rather well, and better to music. He will never "outgrow" his condition, but he will improve on it gradually. The only problem we face is that if the muscles are already weak, (the energy cells on his muscle fibers only function at 40% also called mitochondrial dysfunction) we don't know the future of other muscles, primarily the heart. Currently, the heart is strong! He is still not potty trained (ever changed a 6 year old's diaper, who weighs 70#) and will be undergoing testing of the bladder. Looking back, I feel God was trying to prepare me in the beginning that this journey wouldn't be easy. I misinterprated it to be miscarriage etc. I must say that even though we have some really rough days (he throws fit often like an autistic child) he is the sweetest most accepting child that loves everyone he meets!This is Aaron's fancy stroller (classified as a wheelchair) since he tires easily.

These are the braces he wears on his legs since his ankle muscles never properly developed.

Sometimes he thinks he's our puppy! We really have to watch what he sticks in his mouth, because almost everything goes into it.

He also likes to be silly alot. He puts boxes on his head to pretend things. I do not believe, at this time, that he realizes that he is different from anyone else. I know that time is coming, but now I'm thankful. He doesn't realize his limitations (at times I wish he did!) and the disability doesn't stop him from trying anything. Many times he can figure out ways around it, or thinks he's doing something he really can't (like jumping). He has very protective brothers (and a mom that will tear anyone apart who messes with him). His brothers get very upset when he's stared at. This week we had our first incident of a kid calling him a retard and making fun of his legs. Joshua told us and we informed the kids parents. I know we will have many more of these incidences in his lifetime, so my goal is to educate people. I have never wondered why this happened to me or him. I often wonder why God trusted ME. I feel God has alot more trust in me than I have in myself. I know there is a reason for everything, and I am using my life and experience to make it my mission to teach others (children and adults) what it is like to have or live with someone with a disability. I also someday would like to be an advocate for parents of special needs kids, because it is so difficult to know what to do and how the system works.

We love you Aaron!

I forgot to add a couple of other facts: He finally rolled over at 9 months, crawled at 15 months, and walked one week after his 2nd birthday. His first words weren't until he was 14 months and sentences were after he was 3 years. He will always have to wear some type of leg braces, the hope is someday they will be smaller and just in the shoe.

Please remember to keep our family in your prayers, the road is long!