My Story
I was born with Mosaic Trisomy 18. I was really small and was only 2 lbs. and 12 oz. Mom said that I was in the hospital for five weeks. I guess the feeding was torture because it would take me close to an hour just to drink 10 ml of milk. Eating sure isn't a problem now. Now Mom has to bar the fridge.
When I was young I always did things differently. For example, when I was little I didn't know how to crawl, so I just rolled around and used my feet to read and grab stuff. I learned how to walk and then I learned how to crawl. The only problem with that is that I fell down the stairs on my head twice. I can at least use that as an excuse!
When I was young I had to go to a lot of Doctor appointments and lots of therapy. I hated it! I would scream my head off. I still hate needles because of it. The last time I had a blood test I had to have 5 people hold me down. I haven't had one since.
When I was younger, my Mom asked our geneticist how she would have counselled her and she said that she would have told her to have an abortion. I was shocked to hear that. I'm sure glad that she didn't.
I tried different sports such as soccer, baseball, ju-jitsu and fencing. I wasn't exactly great at any of them.
I was bullied in different places and it was tough. Kids didn't understand that I had special needs and that I couldn't do the things that they could. The good thing about being a Christian is that you can learn to forgive and not dwell on the past.
School was hard for learning stuff. It's hard for me to understand when people talk too fast, or if there are too many instructions or distractions. Math is really hard for me. It takes me much longer to learn things.
Now I am home schooled and I have an awesome teacher and principal. I like to learn a lot about history and I love reading. Another thing I love to do is act. Each year I write a play and then get together with other home school kids. Through my plays I have raised money for different organizations such as: International Justice Mission, Compassion Canada, World Vision, and the Rainbow Society.
I volunteer at a school once a week reading with the little guys. I also do the large group drama at our church for the Grade 2-4's.
I have been trying to help people understand that Trisomy 18 is not incompatible with life and have spoken at several events. My goal is to help save lives and get doctors to look at treating each child individually and not at labels.
I love God and helping others. In God's eyes everyone is precious. I was supposed to be born in August, but I was born 07/07/97. In the Bible the number seven is God' s number of completion or perfection. In the world's eyes I might be disabled, but in God's eyes I am perfect!
Mom's Story
The day I found out that I was pregnant, I was on my knees with tears of joy streaming down my face. After a miscarriage, and a long period of time being unable to conceive, this was indeed cause for celebration!
The pregnancy was wonderful and I couldn't wait to meet this long-awaited precious one. With each visit, I was told that everything was progressing as it should. Towards the end of my pregnancy, Brandon wasn't growing. His biophysical profile indicated that he was only 2 pounds and 12 ounces.
People would come up and pat me on my belly and say,"Oh, you are so tiny!", thinking that they were giving me a compliment. On the outside I would smile, but on the inside I was crying. In my mind I thought that maybe if I ate more, or rested more, this little one would be bigger. A verse that was a real source of encouragement was 1 Chronicles 16:12, "Look to the Lord and His strength. Seek His face always. Remember the wonders He has done and the miracles He has performed..."
Even though I was uncertain of what would happen, I knew that I had a God who knew every detail.
I started having contractions six weeks early. My obstetrician, Dr. James Boulton, consulted with my pediatrician, Dr. Robert Moriartey, and they decided that a C-section would be performed. Brandon was born weighing in at a whopping 2 pounds and 12 ounces - precisely the weight indicated from his biophysical profile and measuring 15 1/4 inches!
The first time I saw this little man, my heart melted. He was so tiny, and oh, so perfect in his Mama's eyes!
He remained in the neonatal unit for the next five weeks. Feeding was quite an issue. It would take close to an hour for 10 ml. of milk. On many feedings, I would opt for a gavage feed.
As the weeks and months went by, I noticed that Brandon wasn't able to do things other children his age were doing such as holding his head up, sitting, or crawling, and I began questioning my pediatrician. This began a battery of tests and appointments.
When Brandon was fourteen months old, I received a phone call that left me feeling numb. A doctor told me that she would clear her schedule because we needed to talk. The next day I was given a piece of paper that said Brandon was diagnosed with a Trisomy 18 syndrome with a mosaic pattern. She also said that he tested positive for a viral infection which could mean horrible things for him if it occurred while he was still in my womb.
The paper she gave me said that 95% of the children die before their first birthday. Most children were G-tube fed, didn't walk,talk, had lung problems, kidney problems, and the list just went on. A line at the bottom said that mosaic kids had a "somewhat longer life span" but no one could tell me what that meant. My pediatrician later told me that mosaic children were rarer than hen's teeth.
I phoned the genetic clinic and asked if they knew anyone that was 5 years old- the answer - no. I asked how about 3 years old- the answer again - no. I was devastated!!!! We had prayed so hard for this little one and now I was being told that I could lose him at anytime.
The grief that I experienced washed over me like a tidal wave. After each wave would hit, I would hold on tight to the one who was my shelter in the storm. Here is a brief excerpt from the journal that I kept ...
...yet I will rejoice in the Lord. I will be joyful in God my Savior. Habakkuk 3:18
"Lord, I don't know what to say. I know without a shadow of doubt that You have had your hand upon Brandon since his conception. I know that you love this little soul with all your heart. I can't even comprehend how he is doing the things he is doing. That in itself is a miracle! My prayer is that you do a mighty work in him and use this situation for your glory. Allow us to enjoy your child for years to come. May he love you with all his heart and serve you wholeheartedly. I pray that he has such a tender heart towards others. Continue to wrap your arms around this precious little one. Thank you, Lord. I love you and trust you."
For the very first time, I finally understood what surrender meant. I couldn't be with Brandon twenty- four hours a day. Even if I could, it wouldn't have made a difference. I needed to release him to the one who could make a difference. For the first time I comprehended what God had done when He surrendered His only Son for us.
As the years went by, we were bombarded with Doctor's appointments and therapies. It got to the point that when his therapists would go near him he would scream uncontrollably. No one could tell me if Brandon would ever be able to walk, to talk, or to do all the other things that we so take for granted.
Brandon has experienced things that other children may have not. But through them, I can honestly say that it has shaped him into the wonderful young man he is today.
I am so thankful for the gift of my son. He truly is everything a mother could possibly ask for. Having an extra gene has given him an extra dose of love, compassion and faith. He has taught me so much, and I am moved to tears when I see how God, in His faithfulness, has answered my prayers above and beyond anything I could have imagined! I love you with all my heart, son!
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Dad's Story
