Thoughtful Thursday: the beginning and needing friends

Sometimes I need a friend whose shoulder provides comfort. Being a mother to Anna means that I have these wonderful friends but they aren’t HERE, sitting next to me. The reality is that when you have a child as complicated as Anna, real life friends are few and far in between. I do have a special few who always welcome my call or email even though it’s been months since they reached out to me and I am very grateful for them. But the ones who really “get” it… that are with me for the daily nitty-gritty… they are all over the world and I wish they were closer. I will admit, I am not a good friend. I get absorbed in my family, they need so much of me all the time. So I get selfish, guarding my time and energy and space. When I think about friendship and what it means, it takes me back to the beginning.

I have always been very open about Anna’s issues. When she was 9 months old, well… that’s when the bottom fell out of my world. I knew that she wasn’t a typical baby. Jenny was 9 years old when Anna was born, so it really was like starting all over again. Anna cried a lot as a newborn. She startled easily… her Moro reflex hung around throughout her infancy. She met milestones late. At 6 months, she fell off the growth chart for height, weight, and head circumference. I thought she was just small.

That 9-month checkup. Our nurse practitioner is the one who saw us that day. Curtis had friends, buddies, visiting… one from out of town, so I was at the ped’s office by myself. Stephanie asked me the standard milestone questions…

“Is Anna rolling over both ways? Is she getting up on all fours? Is she crawling? Is she babbling?” All to which I answered cheerfully, “Not yet.” I could see a look cross Stephanie’s face as she excused herself from the room. She came back with Dr. G, our wonderful, wonderful pediatrician. He asked the same questions, and many more. “Is she doing x? How often does she do y? They left together and were gone a long time.

I started feeling funny. I looked down at my tiny baby… I think she was about 12 pounds? Was something wrong? I held her close and waited. I thought to myself, “All kids are different. That’s why there is a curve for growth. Some kids have to be near the bottom. She’ll do things in her own time.”

When Dr. G and Stephanie came back in the room, they looked serious. They said, “We are concerned about Anna’s development and want you to see a pediatric neurologist. We are also sending her information to Early Childhood Intervention (ECI) for evaluation to see if she could benefit from therapy.” They also wanted us to see a pediatric opthalmologist because Curtis has a birth defect with his optic nerve that has caused him some pretty serious vision issues. They handed me some pamphlets, then Dr. G left. Stephanie looked at me, with that sweet, concerned smile she has and asked if I was okay. In that moment, I was. I’m all about getting more information and doing whatever needs to be done. I can take a lot. I don’t think I really realized in that moment what this meant for Anna’s future or my own.

But I remember driving home and worrying. ECI… was that a state program? Would they have the power to take her away from me if they felt I was not doing enough for her? When I got home and shared with Curtis what had transpired, he wasn’t concerned at all. He was certain she was fine and would catch up.

So for the next 9 months, I started the process of induction into the special needs motherhood world. I learned what OT and ST meant, I learned words like “hypotonia,” “microcephaly,” “failure to thrive,” and “high myopia.” I took my sweet, tiny baby to a pediatric neurologist, a pediatric ophthalmologist, a developmental pediatrician, an occupational therapist, a speech therapist, an orthopedic surgeon, a geneticist, a gastroenterologist, and I’m sure there are more that I’m forgetting. By the time Anna was 18 months old, she was preparing for her first of three MRIs under general anesthesia and untold other tests. She was walking but not talking, and had many sensory issues that prevented her from enjoying playgroup and Gymboree classes. I just held her.

I still just hold her.

At 18 months is when my mom (really being the only one who understood) googled hypotonia and we found iVillage’s Child Hyptonia board (a support message board) and Julie and Charlie’s site (hi Julie!!!). I cried tears of relief to have found a group of moms who were experiencing similar problems with their children. For days, I lurked on that board reading story after story. I was so nervous when I posted my first introduction! I’m sure I’ve mentioned this group of moms before, they are my Exceptional Women, and we meet once a year in person without husbands or children.

Anna has continued to add many complicated labels past 18 months, but I had friends to turn to then. At some point in the future I want to write a letter to my younger hypotonia sisters, the ladies whose little babies are floppy and are seeking help and find the Child Hypotonia board. Many of us wondered where the older kids were on that iVillage board… the truth is that most our children did not catch up or grow out of their problems. We joined other boards like ones for developmental delays and seizures. As our children got older, we left those boards and started our own.

It’s difficult to go back in time, to that point where hope still flourished. The journey to acceptance is really hard, emotional, and painful… and you know what? It’s never over. In some ways, it is like grieving a loss. I’m glad I’m through the other side now and that I have friends who understand. But damn, I wish they were here.

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