A few weeks ago, I wrote about my daughter’s health issues and how we were anxiously waiting to see if the new, specialised, amino acid based infant formula the doctors put her on would work.
Dot seems to be more comfortable on Neocate. There have been fewer tears, less screaming and fewer sleepless nights for her. However, for all intents and purposes the formula has failed. Sure, some of her symptoms have improved. On good days we even get smiles and giggles! But her GI tract is still inflamed and it sometimes seems that the bad days are an endless loop of time we are permanently trapped in.
We have also reached the all too familiar “what *is* this?!” zone from medical professionals. The pediatric dieticians who were previously convinced this is a milk protein allergy are now saying they have no idea what is going on with my daughter, though they did kindly suggest I should feel free to take her to the emergency room at any time….
So…we need to start searching. We need to track down specialists, diagnose Dot and find the treatment that will offer her the best quality of life. Fortunately or unfortunately, this is the part I’m actually good at. Organising all things medical is one of my fortes!
We’ve been a bit secretive about Dot’s health with people. I didn’t want her existence to be defined by a set of symptoms or a diagnosis. I didn’t want people to look at her every time she cried and think “oh she must be in pain again, poor child”. Naïve? Perhaps. I had the best intentions though; that must count for something!
Ever so slowly we’ve been sharing the news with a few people. And ever so slowly, they have been distancing themselves. This tends to happen when I am particularly unwell too. Please don’t think me unkind, I don’t mean this badly, it’s just a fact of life. I think we tend to distance ourselves from the small tragedies of people’s lives.
One of the most common reactions people had to news of my pregnancy and Dot’s birth was to call both a miracle. Family and friends said time and time again that the news was so good that not only would my health stabilize, the birth would go ok but that the baby would be healthy too. I had unknowingly stepped on one of the reasons Hollywood movies are so successful; we all love cookie cutter endings! We yearn for them and irrationally try to convince ourselves things will turn out ok, because they somehow have to.
Life *is* miraculous. It is also painful beyond belief, astonishingly beautiful, filled with laughter and love and randomness. Dot’s birth is a miracle regardless of her health and of her life’s trajectory. Not because I was ill, seemingly infertile and got pregnant. No. Because Dot, in all her ten weeks is a small person who, like a million other small people on this earth, is fighting for her life and for the privilege that is our existence. Sometimes she seems to enjoy it. Other times she needs one of us slightly older people to pick her up and hug her and remind her that bad days don’t last forever. The sun will set and as long we are alive the possibility of better days ahead is there. And on all the days we are on this earth the possibility of laughter and joy and love surrounds us. What more can anyone ask for…?
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