Although I have posted this on FB, I thought I would post this again here…
Before we were able to take Amelia home from the NICU, we had a “team” meeting with her doctors. This meeting included general doctors, nurses, specialists, geneticists, social workers, and counselors. We were given a checklist of what she would never accomplish, how her health concerns would negatively affect her life, and how she might possibly die by the age of two.
Sobbing hysterically by the end, I was unsure I would ever catch my breath again. Almost two years later, I reflect on that day and think of the many things they forgot to tell me…
The geneticist forgot to mention the many times throughout one day you will look at her and feel overwhelmed with peace that such a person exists in this world. The general doctor never mentioned how many times we will tell her we love her and snuggle up close to her face to feel the warmth of her breath in our ear knowing in our hearts that she is telling us she loves us back. Never did the social workers say that her siblings will learn that everyone has a place in this world even if society does not treat her with the respect and dignity she deserves .The orthopedics didn’t say that even though she may never walk to the park she will enjoy the sunshine on her face and the fresh air on her skin as much as any other child. The nurses didn’t tell us that she will ease your pain with just a little cuddle under your chin after a long day at work. The neurologist was quick to tell us she may never know you or recognize you, but they didn’t tell us she would pick her head up while you are holding her and look you dead in they eye when you are talking to others around you as if she is saying, “I hear you and I AM HERE!”
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Crissy- this is so true. I think that doctors are trained to give the worst case scenario for many reasons. In the case of Wolf-Hirschhorn Syndrome, it’s because they know nothing about it. We had the same experience. The geneticists and all of the other doctors come in, read the diagnosis and tell you what the big book of syndromes has to say. The numbers are published at 1 in 50,000. I have a hard time believing that this is even close to being accurate. I think it is far more rare than they say. Either way, all of our kids are unique and all we can do is love them and hope for the best.
hi there,
Talia was diagnosed in April last year ,she was1yr and 3months old,we didnt have a clue what WHS was and the Genetist gave us some info which she had printed off the computure,this was a discrition of whs and a list of symptons,she then said donot go on the computer and look it up untill you have phoned the 4p support group and spoken to somone…So as i was on the phone my Partner Will looked it up on the net,well his face droped a mile as he read the life expectancy….The doctor hadnt told us any of that….We went through a rough time that day and i will never forget having to explain it to our older children,and its been hard at times having to explain to others including medical professionals…..so im sad for you and your family you had that experience…..but am glad we all have sites like this that we all come together regardless to where we are in the world……Much love Samm
We can all relate to dealing with the worst case scenario. It is a common thread running through all the stories, whether the bad news comes from doctors or the internet. I was told Rochelle would never see her 6th birthday. At age 10 she was diagnosed with WHS and I was told she’d never survive her teens. Now she is 33. The world likes to keep us agitated and living in fear. It takes super human strength to say, ‘No! I won’t live anxious and afraid of what lies ahead.’ When I convince myself to do that, I have the strength to do what needs to be done. Fear and anxiety just robs me of power and leaves me hopeless.
As I read these stories, I get the sense we are all doing what most people think is impossible to do, and many of us are thriving on the journey. Some of us enjoy it, most of us wouldn’t trade it for any other, even though it isn’t easy. When I was a young nursing student, I thought the only thing I wouldn’t be able to cope with, was a child with microcephally. It seemed like such a hopeless situation. It isn’t. Maybe all we have to do is stop responding to the the thing we are afraid of with fear. When we hear the worse case scenario we need to say, ‘that’s okey, I’m not afraid’. Chances are we will then beat the odds. Overcoming fear is mysteriously empowering.