Phillip S

Phillip’s Story

 

 

 

                  “He will be a happy boy because he has us to love him.” 

              Phillip S., Age 3,  Mosaic Trisomy 9, Morton Grove, IL, USA

 

 

My second pregnancy came as an answer to many prayers for another child and a sibling for our wonderful daughter Victoria.  I remember calling my husband and telling him that a miracle happened: we were expecting!

Everything went well, with good results on all prenatal tests. One night, we had a false alarm and after the doctor sent me home, the next two days were very hard and worrisome. During the delivery, Phillip’s heart rate dropped and that was the first time I saw concern on the doctor’s face.  We expected a healthy boy, but within seconds after his birth and when I saw him being rushed away from me, my first question was, “What happened?”  From those early moments, I knew down in my heart that Phillip was going to need prayers, time, and love to survive and get through life.

The first weeks were hard and filled with worries. I remember Victoria saying, “Mom, all we do is take him to the doctors.” And, an eye doctor at four months telling me: ” He does not see, he has no vision”.  Some of those statements left me breathless. Over the next several months, more and more doctor visits followed. Then, therapies were added one by one until our daily schedule was controlled by “who is coming to help Phillip next.”

At five months, he had his first surgery, followed swiftly by two more. My initial question of “What happened?” stayed with me for the next 11 months until we received Phillip’s diagnosis: Trisomy 9 Mosaic. I remember the day that we got that call — we searched the internet and found a paragraph about his condition. That paragraph did not begin to describe what became our everyday reality. The genetic doctor who called me just repeatedly said, “This happens,” as if it was no big deal and not our fault.

Trisomy 9 is a very rare chromosonal disorder in which the entire chromosone 9 appears three times rather then two times in a cell. Mosaicism means some cells have an extra chromsone 9 while others have the normal pair. Some of the charactristics vary, however some of the issues include growth deficiency, mental retardation, distinctive skull or facial malformations, low set ears, musculoskeletal or kidney abnomalities and also heart defects. Also many kids have eating, vision, hearing and verbal issues. My question to all this was:”Is there any other part not affected?”

Phillip was small at birth and gained weight very slowly, he has low set ears, one eye did not open for three months and he has vision problems. He did not pass any of the multiple hearing screenings which leaves him even to this day to hate his hearing-aids. He had kidney nephrosis that resolved in time, but mostly his muscular and skeletal systems are affected. He started to sit independently at three years old after many hours of therapy and for his feet he is wearing orthotics afo’s. Even with all these he is not crawling or standing. He has Gerd but since he enjoys food and eats well, the reflux is less of a problem.

I remember having one conversation with my husband and, in between my sobs and tears, looking at Phillip and saying, “My poor boy. How much you will have to suffer. What kind of hard life is ahead for you? Why can’t you just have a normal childhood?”

My husband replied, “He will be a happy boy because he has us to love him.”  That’s when a light shined for me.  From then on, I changed my views.  Phillip needed us to advocate for him, to fight for him, and to choose for him.  Most of all, he needed us to love him.

Phillip is 3 years old,a happy and loving boy. He has milestones that he has not met or we don’t know if he will ever meet, but certainly having him in our lives changed us forever. Now we get to enjoy being with him, laughing together at his favorite words or things like when we say the word “pajama” or “Ernie”. He adores his big sister with her games and tickles even if she says:”Victoria’s life is not easy”. We love his touches to get our attention but most I have to say, I love to hear him say”Hi mama” even if he babbles mama all day long.

Someone had asked when do you get to accept the pain of a parent with a special needs child, and my reply was: “when I got to thank for him the way he is, that was when I got peace in my heart.”

God has blessed us in diferent ways and we have got to keep on moving foward for our kids and for us as parents.