Having A Son With Down Syndrome - An Introduction To Aiden

Finding Out

At about 30 weeks my wife started getting bigger than she should of. For some reason she was taking on extra fluid that should have drained. It turned out that our son had an abnormality where his stomach did not attach to his intestines that was causing my wife to take on too much fluid.


At first the doctors described what the problem was and then that it was 95% successful in treating however there is a high correlation between this and down syndrome, however without further tests they could not know for sure. This gave us some time to start to prepare for what was to come.


Every parent has ideas of what their child will be and hopes that they have a healthy child and this was our hope as well. The tests came back positive that our son had Down Syndrome and I will admit that I was taking back by it at first. I wasn’t sure what to think and as most things of this level it takes some time to sink in. There were ranges of emotions from anger to sadness as well as an understanding that Aiden was a person too and his life is important.


At this point in time I had no real connection to Aiden other than he was to be my son. However that was soon to change as we got to do regular ultrasounds that showed pictures of my son moving around in his mother's belly.  I was soon to find out that Aiden was a charismatic and energetic young man with lots of wit even before he was born.


We could see Aiden liked to swim and play and one time he even grabbed hold of a needle that the doctor was using to drain the excessive fluid. It was pretty cool.
I was already starting to learn a little about Aiden's incredible personality that I was going to get to know even better very soon.

At Last We Meet

Finally the day came. Aiden was born premature by a few weeks early via a C section. He was very small and weight 7.5 pounds. He had to go to the NICU right away where he was put on oxygen and nutrient support since his stomach did not connect to his intestines. That was a rough time as we were not sure if would live for sure.


Still I could see right away with his energy and the way he would look at me that this little man was the same guy who loved to swim and play in his mom just days before. He would grab my finger and shake it every time we came to visit him in the hospital. Something inside me knew that he was going to be ok but still I prayed for his health and safety every day.


The day came for the operation to take place that would connect his stomach to his intestines and we were all very nervous and anxious to see him be better and start drinking milk. It was a 5 hour wait and the news was good, Aiden came through perfect.


Unfortunately there was more to come that was not known about. Aiden was diagnosed with transient leukemia once his blood tests came back with low platelet counts.  Well without knowing anything about leukemia we were once again sent into a panic of fear that our son could potentially die.  With a deep breath we started researching and finding out more about what this mean. It turned out after speaking with a specialist that this form of leukemia called transient as the name suggests comes and goes. That is the blood levels of certain platelets will go up and down without causing any serious side effects and that 89% of cases are curable if they go into full leukemia.


Well that was good news and it just meant that we were going to have to monitor his blood levels for the next 10 years.


As Aiden got stronger in the NICU I could see his little personality and charm coming out. He naturally had a nice calm disposition and would often laugh and smile at us when we would visit. Soon he would be coming home after 3 weeks.

Living With Aiden

Aiden quickly won my heart and became my new best friend.  He loved to play with whatever he could get his hands on. I remember one time when he got his hands on a small ball and then threw it and let out a big evil laugh. I loved it.


I soon learned that anything a typical kid could do Aiden could do too. Whether playing ball, or climbing rocks Aiden would do it. His fascination with learning was and is incredibly strong. He wanted to read books all day and learn sign language. Signing Time videos quickly became his favorite and I began to realize that people with down syndrome are very capable people.


There are tough times as certain things are more challenging and he can still be a little stinker like all kids saying no and terrifying his sister by hitting her and taking her things.

Trucks, Trains, and Super Heroes are his favorite things and he is all boy when it comes to what he loves to do. We are proud of our little man as he can count to 10 and knows his ABCs and is only 4 years old. 


One of the hardest things for people with down syndrome is talking since people with down syndrome have low muscle tone it causes their tongue to relax and this where the speech issues come in. So we are working hard on this one and it takes some time unlike our daughter who is talking and a year younger. Aiden knows lots of words and understands what you are saying but for him saying the words together to make sentences is harder than for us.  Still he always puts in a best effort and has a smile to go along with it.


I must say living with Aiden has its challenges but at the same time the rewards are having his happy voice and smile cheer me up anytime I want.
 


Thanks for taking the time to read my story.

https://steemit.com/@groovy


ADDITIONAL PROOF THIS IS NOT FAKE FOR PEOPLE ASKING IN THE COMMENTS SECTION BELOW. 

HERE ARE TWO MORE PHOTOS OF AIDEN HOLDING THE PAPER THAT I WROTE ON THAT I DID NOT USE WHEN I MADE THIS POST.



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