An Imperfect Miracle?

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.

Image

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…?

Advertisements

Tags: , , , , , , , , , , , , ,

About icedcoffeecreature

Hi there! I’m Zoe; a (mostly!) green foodie, soon-to-be mother of one and the proud “owner” of a slightly wonky immune system! If you happen upon my page, please say hello!

9 responses to “An Imperfect Miracle?”

  1. projectwords11 says :

    This rings so many…too many bells with me…how people distance themselves from the reality of life..and yet the miracle of life can also be a very painful one…that IS life! Sending you and your mum a huge smile tonight Dot, sleep well all x

  2. icedcoffeecreature says :

    Hey! I can imagine it rings a few bells with you yes… Most people tend to distance themselves from most things painful, most of the time. Oh I’m with you; life most definitely isn’t just smiles and roses…. Thank you re the smile! I hope you have a good night too! 🙂

  3. Mom's Living Leaner says :

    I think people distance themselves because they are affraid of the unknown. Its easier to turn away then face unknown new and scary territory. I am sorry you are going through this. Enjoy those baby smiles and giggles 🙂

  4. icedcoffeecreature says :

    Hi! Oh yes I agree with you there; people are afraid of the unknown. But we also tend to be afraid of all things painful and as you say it’s easier to turn away. Thanks! They’re addictive you know, those baby smiles and giggles! 🙂

  5. judithkingston says :

    What a moving post. Whatever turns out to be the issue with your daughter’s health, it won’t make her any less perfect or any less miraculous! Like you say, after the miracle comes the every day with it’s ugliness and its shining moments of glory and the hugs to make bad days better. I hope the doctors find out how best to help her soon. xx

    • icedcoffeecreature says :

      Thank you…. You’re absolutely right. And to be honest I’ve always thought the every day things with all the ugliness and shining moments of glory and hugs are just as miraculous as the more unusual things…! Maybe that’s biased, but there you go…! 🙂

      Zoe

  6. HappyMommy says :

    Miracles don’t have to be perfect.
    For what it’s worth we dealt with massive crying, gas, vomiting and tummy pain any time we tried to feed my daughter formula. As it turns out she’s sensative to corn-syrup (as well as milk, eggs, and soy).

    • icedcoffeecreature says :

      Oh my…. Sensitivities to foods are increasing so much it’s surreal…. I’m sorry to hear about your daughter’s adventures. Is she better off the corn syrup/milk/eggs and soy?

      You’re absolutely right. Miracles don’t have to be perfect 🙂

      • HappyMommy says :

        Yeah, without any of that she does okay. We had to add in some Miralax to keep her regular, but she is gaining weight and thriving. 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: