A Big Hero, A Big Heart, A Huge Smile...That's My Little Boy!
22 December 2000
On December 9,1985 I was not feeling very well. I was 26 weeks along on my first and only pregnancy. All check ups I had were good. I was very healthy and happy. Late that night I was not feeling the best and thought it was from getting ready for christmas and being on my feet too much maybe. I sat in my rocking chair and gave both of us a little rock and started to feel little pains in my back. I called the hospital, they informed me to come to the emergency just to have it checked out. Well that trip ended up being a nightmare. I was in labor and way way to soon. I was air lifted to the provincial hospital because our hospital was not equipped to handle a preemie.
On December 10th I gave birth to a little 1 pound 3 ounce baby boy. Ryan was in for the fight of his life. His lungs were not developed enough, a brain bleed, his heart was not pumping blood to his little body correctly. He was placed on life support and we were told that there was no hope for this little fellow to survive. WRONG! He fought like a trouper and he had a mission in life.
At a whopping 5 pounds we got to bring Ryan home. He was 4 1/2 months old. The doctors told us to love him quick because they thought we would only be having Ryan for a little while. At this time Ryan was not reacting to anything. He did not cry, coo or move much but he would follow me with those huge eyes. I would prop him up on pillows and let him see us where ever we were. We loved him lots and lots, but we always had a feeling Ryan was about to do something more even though all tests showed he would not. WRONG again. At the age of 1 year and and 1 week all of a sudden my little man rolled over. A lot of family and friends thought he must have been on an angel and that is what happened. I always knew he rolled and I was so right.
As a mommy I could not think that the doctors were right about him. I would continue to try and stimulate him with lots of talking and touching. I knew I was reaching him. Just after his first birthday we took him to the hospital he was born for a check up. I did not want to do this because I really felt that they were not giving him a chance. They told me Ryan needed a shunt because his brain fluid was not draining properly and he had another brain bleed but that was "normal for a preemie" A phrase I would hear all to often.
When this shunt was put in the difference in Ryan was amazing. This little boy went into surgery, he rolled one time but came out and with in days was saying mom mom mom mom he was in new born cloths still and with in weeks he was growing like a little weed. He was rolling smiling and I was beaming to put it mildly!
He was not suppose to talk, he could sing, he was not suppose to move, at the age of 2 1/2 he could run. He was spoiled but why not, you could never hold your child to much, rocking him to sleep was my favorite time of our days.
Ryan progressed with leaps and bounds with set backs that he would always fight and win!
December 9, 1991 was the start of a downward drop. Ryan would be six the next day. We had a pool party planned and he was so excited. We did Ninja Turtle invitations for all his little buddies. he was so lovable and he was like a magnet for others to always to want to be around him. Energy plus and happy. This all changed that day. He was tired, sad and wanted to be alone. I called our doctor and he said well the flu is going around. If he started to vomit to take him to the ER and to have his epilepsy meds given to him and to keep a close eye on him so he would not dehydrate. He was still tiny for his age, size 3x.
That afternoon Ryan was showing all kinds of signs of the stomach flu. We went to the ER and the doctor there said, 'this little boy does have the flu but his drug levels are good because he has been on them a long time so one day missed will not hurt" made sense to me. That night he woke up in a daze like state. He was sitting on his bed looking at the wall. Then all of a sudden bang into the worst seizure I ever saw him have. We rushed him to the ER. His blood pressure was very low and his little heart was pounding. He was given a drug to fix this. In a half hour Ryan went into a cardiac arrest. CPR was performed and he was back. But he was never the same Ryan.
That winter was bad. He stopped walking, his talking was on the need to do bases. He would not play. All trips to the doctors were like they were when he was born, I got the he was a preemie he has brain damage from bleeds comments. I knew they were right but I also knew deep inside something was wrong that should be fixed. His shunts would block they would change them. Always with the same comments, Ryan was not draining fluid from his brain so there was always pressure on the brain.
On August 18th, 1992, Ryan would be almost like the old Ryan. he was happy, energetic and getting himself in heaps of trouble with his mommy! He had a water gun that he would soak anything that would move! I had to get him to take that energy to do something that would make both of us happy. I love the sounds of his giggles and his voice that I was missing so much. At 3 that afternoon Ryan was amazingly happy. Running playing laughing yelling. I was spending the day mostly saying Ryan get out of that. Ryan stop making the puppy wet, he would just look at me and laugh. He made us play the song Don't Break My Heart My Achy Breaky Heart....over and over. He loved that song and Black Betty. At 3 o'clock our worlds were shattered. Ryan was in a little pool of water and all of a sudden no Ryan. he was face down in the water. He was rushed to the hospital. All attempts to revive him failed. The doctors there said Ryan drowned. I yelled no he did not I was there, the water was up to his knees. He was not in the water long. They said we are sorry that is what happened. We demanded an autopsy. Results were inconclusive. They knew at the time he had a grand mal seizure and his heart stopped. Just like on December 9th. He did not drown, there was no water in his lungs and in his belly. This doctor said it was like he just went to sleep. Well I just wanted him to wake up! My heart was full and my arms were empty for the first time and I hated it.
We were asked if they could do tests on Ryan's brain to see if they could see why Ryan was Ryan, why did he have so much troubles after doing so well. We said yes please. I wanted answers and maybe for the first time I would have one. Well at that point we did not get one.
In December of 1996 we would finally get one. I was diagnosed with an AVM (My AVM story). I had the same nerosurgeon that Ryan had and he remembered me. When he came to my room and said that he wanted to look back at Ryan's charts and scans. I thought why but just said I do not care. I just wanted to close my eyes and feel for once that things are ok. He came back in a short period of time with the news that he is pretty sure Ryan also had an avm and that is where the brain bleeds came from.
Not that it made a difference now. Nothing would bring him back and NOTHING will ever take the memories I have in my heart of the little boy with the huge heart that went away to soon!
I have done a web site in his memory. He is my guardian angel!
Discussion, comments, or questions: Joann Williams
© Copyright 2000 Joann