Child Of The Month

Julia's Story
by Kathy Wise

There was nothing that would ease the pain of having a miscarriage except for getting pregnant again. When, 3 months after the miscarriage, I discovered I was pregnant both my husband John and I were elated. We had been married for 5 years and were both ready to start a family. My pregnancy went well. I was put on modified bed rest in my 8th month, though, because I had contractions. Julia was breech, so she was delivered by Caesarian section on September 12, 1996. She weighed only 5 lbs 10 ozs.

We had music playing in the operating room as she was being delivered. It was Mom playing classical music on the piano. The lights in the O.R. were dimmed. She was placed in a warm water bath immediately after she was born. It was sort of like a LeBoyer birth – supposedly less violent for the newborn. The doctors and nurses were touched by her birth. A few had tears.

I can remember later in the afternoon on the day that Julia was born. I was lying in bed with her in my arms sobbing with joy. My brother and sister-in-law walked in the room. My sister-in-law asked “Having a tender moment?”. She understood the joy of motherhood that I felt.

The problems started immediately. She was found to have a dislocatable left hip and was placed in a Pavlik harness on day 2 of her life. The harness was supposed to keep her hip in place so that hopefully it would develop more and stay in place. On day 7, she was hospitalized for a week for hypothermia. We never did find out why her body temperature dropped. It was during this hospitalization that I saw my husband cry for the first and only time in the 13 years that I have known him.

At age 2 months, Julia was put in traction for a week then put into a spica body cast. The Pavlik harness hadn’t worked so the cast was needed. Julia was in this full body cast for her first Christmas. When, at the age of 12 months, she wasn’t sitting on her own, we started Early Intervention and saw a neurologist. He did a slew of tests and didn’t find anything wrong. He didn’t do a chromosome test. He said she had mild cerebral palsy. Julia was able to sit on her own shortly after starting early intervention and soon was crawling. At 16 months she had a grand mal seizure. She was air lifted to Children’s Hospital in Boston and spent some time on a respirator. That was the scariest time of my life. I was so numb in that helicopter. I couldn’t believe what was happening to my baby. For reasons I don’t want to go into, we started seeing a new neurologist after the seizure.

Julia began to say words around 20 months, and walked shortly after her 2nd birthday with the help of leg braces. In August of 1999, the month before her 3rd birthday, she had a major hip operation and was placed in another full body cast, this time for her right hip. Her right hip was subluxing and she spent 7 hours in surgery so the surgeon could put a plate and pins in her hip and reconstruct her hip joint. She was in the cast for her 3rd birthday. She spent a total of 8 weeks in the cast and had months of intense physical therapy afterwards.

Around the same time that Julia was to undergo this surgery, I was applying for Julia to receive Medicaid. I was going over a neurological office visit report and saw that the doctor had said that if a chromosome analysis hadn’t been done yet, we should do one. I knew that that test hadn’t been done, so I asked that we get an order to do it since she would be having her blood drawn anyway in preparation for surgery. That’s how we found out about Idic15.

When the geneticist told us about Idic15, my husband and I had different emotions. My husband was relieved to finally know why our daughter was so delayed. I was crushed. Why did this happen to us? Why did this happen to Julia? Would I be strong enough to mother a child with ‘special needs’? So many questions.

The geneticist put us in touch with Donna Bennett, cofounder of IDEAS, and then we learned about the support group on the internet. This group has been my lifeline. It is truly a comfort to know that there are other people dealing with similar issues with their children. We exchange information, smile stories and most importantly, offer each other lots of support. I don’t know how I would have gotten through all of this without this group. It has been this internet group and the support of my mother and father that has helped me to maintain my sanity. My mother and father have been there every step of the way for me. Through the hospitalizations, my depression shortly after Julia was born, and just helping out with Julia when I need a break. John and I have been able to get away for weekends with friends or to Family Support Conferences knowing that Julia is with people that love and care for her as much as we do.

Julia started preschool in November of 1999. We are very fortunate to live in a community that can pride itself on its special education system. I have seen many improvements in Julia since she started school. She is more cognizant of the world around her, she follows directions more readily, her eye contact has improved, her low muscle tone has improved, and she learned her colors!

Now we are approaching Julia’s 4th birthday. Let me talk about this beautiful little girl’s personality. She loves to give kisses. She loves to give hugs. She loves dolls. She loves books. She loves taking baths and swimming. She loves Barney and Elmo. She loves to go for walks in “the jungle” (the woods near our home). She loves music. She knows the words to a countless number of songs and nursery rhymes. She loves her Nana (my mother) and Papa (my father) and has told them so. She loves to sing. She thinks there is a song for everything in life. “Car song?” “Airplane song?” she’ll ask. So we make up little songs about everything. She has an incredible memory. She’s just precious beyond words. Those of us who know her well, love her with all our hearts.

Julia’s muscle tone is still low. She is very delayed in both fine and gross motor skills. Her speech is mostly in phrases, and she has no conversational speech yet. She can get her wants and needs across – I am grateful for that. Julia does show some autistic signs but would not be considered autistic. She has sensory integration difficulties but they seem to be diminishing over time.

Let me talk now, about the changes that have occurred in me after having a child with special needs. Before I had Julia, I was a ‘go with the flow’ type of person’. I didn’t create waves. Now, I have become an advocate, not only for Julia, but for myself as well. I’ve learned that in order to get what you want, sometimes in life, you need to speak up. The ‘squeaky wheel gets the grease’ as they say. This squeaky wheel will squeak as long as it feels that Julia is in need of something she is not getting. I’m not afraid or intimidated by doctors anymore. We see so many of them. They are ordinary people that have furthered their education. They have faults. They are not Gods.

What the future holds for Julia I do not know. I do know, however, that I am committed to doing whatever I can to make it as bright as possible. She is a gift from above, not “typical”, but a gift nonetheless. For some reason, God had chosen me to take care of one of his ‘special’ children. I suppose I should feel honored. Hopefully, further along in the grieving process, I will. For now, I am just enjoying Julia and hoping that one day I will truly come to terms with all of this.

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