Holly Hubbell

Our son, Parker J, is a bright, loving and funny ten-year-old who has a chromosomal abnormality called Partial Trisomy 18q. He is one of a handful of children who have a similar abnormality and one-of-a-kind with his exact diagnosis. His condition is frequently deemed “incompatible with life” and the vast majority of children with a diagnosis similar do not survive birth. Of those who do, approximately 90% of those children have a survival rate of less than 1 year. Our sweet boy has defied ALL of these statistics. He not only is surviving, but he is also walking, running, talking, laughing and generally driving his sister crazy. Even though we consider him a medical miracle, he is still considered “globally delayed” and consistently scored 18- 24 months behind his typically developing peers. He attended preschool 4 days per week where he received PT, OT and ST as well as classroom time and playtime. In addition to the school therapy, he also received PT, OT, and ST on a private pay basis. Expressive speech and fine motor skills were the skills where he required the most assistance. I never ever considered myself as being equipped to be a mom to a child who has special needs. In fact, I never really had much interaction with families who have special needs at all. Parker J was 13 months old when we received his diagnosis. We knew that he had delays in meeting his milestones, but thought that it was due to his being 5 weeks premature and spending 28 days in the NICU. We actually had the genetic testing done as a “ruling” out the reason for the continued delays. I never dreamed that it would come back with the diagnosis that it did.

As you can imagine our immediate reaction was disbelief. Our Parker J did not fit any of the descriptions that we could find. No one in our medical community could help us figure out what to expect. Almost exclusively the information that is published regarding Trisomy 18 refers to the Full Trisomy. Parker J has a partial so what does that mean? It means we don’t know. It means we consider each day we are given Parker J as a blessing and say thank you. It means that we learned to celebrate even the littlest of accomplishments and learn to appreciate the fighting spirit of all of these kiddos. It means that we get to watch a living miracle grow and touch people in ways we never thought possible. Now at age 10, Parker J is reading, writing, learning multiplication and loves playing basketball and golf. We offer our story as one of hope. Our prenatal care providers admitted that had we had the diagnosis prior to our delivery that they would have recommended we terminate. I thank God that we didn’t know of our diagnosis then. Honestly, I don’t know what the right answer for me and my family would have been having we known. I often wonder if Parker J would have received the level of care that he did during his 28 days in the NICU had we known of his PT18q. I shudder at the thought of medical personnel dictating courses of or withholding treatment for others in similar situations. No modern medical expert has yet to be able to accurately predict what our Parker J will be able to accomplish. He has so far exceeded any of the early diagnosis predictions that my husband and I have stopped asking.

The Hubbell Family – Holly, Kyle, Reagan (14) and Parker J (10)

If you are reading this story it is very possible that you or a loved one have also been chosen to travel this journey. Your story, like ours, will be filled with ups and downs. It will push you farther in your faith, your relationships and within yourself than you ever thought that you could go and then a little more. There will be days when you don’t think you are cut out for this and others when you know this is exactly what you’ve been called to do. I struggled for a long time asking God what I or my husband had done that was so wrong. Why did we deserve this punishment? Why is God punishing my son? We turned to God and realized that this journey isn’t a punishment at all. It is a way to glorify Him and all that only He is capable of. While we have no idea what to expect along this journey, we know that it has meaning; it has a purpose. Our comfort is knowing that God chose our family to walk this walk so that we could glorify His kingdom.