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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  • Carol Askew - Your journey mirrors mine with Megan so much. I'm so glad we found each other, have each other. I don't tell you, and our other exceptional women friends, enough how much you mean to me. But, yea, I wish I lived around the corner from you! ((hugs))ReplyCancel

  • ~Holly - I'm so glad we found each other too, Carol. I would give anything to be with your IRL.ReplyCancel

  • UhManDuh - Holly, This blog was like….MEANT for me I think. Summer is having some developmental delays & her doctors are looking more into if she could have this or that. I'm worried. I LOVE my daughter without rhyme or reason. She will FOREVER be my daughter but I'm scared. I mean….scared. I dunno what to do. I'm hoping her ped is just being overly protective (we have SUCH a wonderful ped) but I also wonder…Thank you for shining a lot of what a lot of ppl think is a "bad" thing or "defect"…ReplyCancel

  • ~Holly - (((Amanda))) I am so so sorry that Summer is having some delays. It's a really hard thing to not know what is wrong and if she's going to catch up. Seek out support. It is so important. I love you, sweetie, and I'm here for you!ReplyCancel

  • Mom to Maddie - Holly,

    Oh boy does this hit home for me. It was 6 years ago we joined the Hypotonia group… I always wonder where the six years have gone…. I met some amazing people and developed some amazing friendships.. My support group who "gets" me are all on the internet too. Unfortunately I have never met any of them and some friendships I have lost. My dearest friend abandoned me for some reason and would not explain. I have spent a year trying to figure it out and never did come to a resolution. In recent months, I have wondered "how" a person that I have never met could hurt me so much?? And yet, here I am a year later and never moved on.. I have called myself pathetic so many times. I guess, it was the one person I connected with for 5 years…and that's a long time. But I too wish there were still someone "around the corner". Since we received a diagnosis, I have found a new set of friends..but I am fearful of connecting too deeply for fear of getting hurt again. But you are right..I don't think there's ever a full acceptance… it was only tonight that I was driving in my car thinking about what one of my other "friends" had posted and I started to cry…it just hurts that the life you plan to have for your child is so different than what it should be…so many tests, appointments, etc…

    So hugs to you my dear friend xxxxReplyCancel

  • ~Holly - (((Ash))) I'm so sorry you have lost a dear friend for an unknown reason. I can't imagine the pain and confusion that brings you. This journey is so hard and opening yourself up to others and letting them into your heart, your soul and all those fears… it must be very devastating to have someone turn away. Don't build your wall so tall that no one else can get in. You aren't alone.ReplyCancel

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