Embracing Life & the Child with the Disease

The Choice (Part 1)

Over the last several years, July has been a month of reflection and praise despite circumstances and a recollection of God’s blessings in my life.  Between Ethan and Ryan, I had four miscarriages.  Four losses of a precious life I so longed to hold.  Four grieving processes.  Four occasions to question everything.  My first miscarriage was in July of 2002.  It was my second miscarriage and the process started on Father’s Day and was a long ten-day process ending in d&c.  July 2003 was my fourth miscarriage.  Jason and I began discussing that God only intended for us to have one child, Ethan.  But lo and behold, by Thanksgiving, I was pretty sure I was expecting again . . . and this baby I would carry full term.

On the way home from the hospital, riding in the back of the car with this tiny baby, Ryan, only about 40 hours old, I began to weep uncontrollably.  Jason could hear me, I’m sure, but looking in the rear view mirror asked what was wrong, almost panicked.  I could just barely speak and told him that it just dawned on me that in July of 2002 and 2003 we grieved the loss of babies.  And here we were, taking home a beautiful bundle of miracle in July 2004.  There was such a sweet, overwhelmingly emotional peace and healing in that realization. 

I mention the miscarriages because I remember back then when my heart was aching, when my mind was angry, when my spirit was broken, when I felt as though I did not have the strength to do anything but grieve and just be bitter . . . that I had Ethan to think about.  Ethan was two and a half with the first miscarriage and was weeks away from four with the last.   And I know most would say he was just a baby, but believe you me, that child was 100% aware of what was going on.  He was with me all the time, he knew my moods and sadness, even when I thought I was hiding it.   I wasn’t as good as I could have been for him.  I didn’t recover as quickly as I should have.  Ethan saw a lot of sad days even when I waited until he was sleeping to cry.  Children just know.  And they learn how to behave, how to deal with life based on how we do.  Sometimes I wish I had it to do all over again for Ethan. 

But that chapter in our life is over, new pages have been written in our journey, some filled with inexplicable joy and some with terribly overwhelming sadness.  But the chapter we find ourselves in right now is the first year of Type 1 Diabetes.  Remember that child that we waited for, the one we prayed for and ached for?  Well, he’s the one that has been diagnosed with Type 1 diabetes.  I’ll never forget being in that hospital cubicle in the ER with the initial diagnosis and waiting for a room to be prepared for us and our two-day stay and saying out loud to my mom, “This is the one we so longed and begged God for, and he has a disease?”  Oh, that grieving process is so different from the miscarriages, so overwhelming and produces so much fear and anxiety . . . and it’s timeline reaches throughout his life.  There is no moving past diabetes. This is a lifelong maintainance disease.  It is not terminal, in which we are so very thankful, but this is his whole life unless a cure comes first.  There are shots and finger pokes and carb counting and exercise without over exertion and D is ever-present with inexplicable numbers and unpredictable reactions.  And it goes without saying what that there are complications are IF we do not work to keep him healthy. 

So, I know you are wondering, especially if you are a T1 parent or have T1 yourself, why so doom and gloom?

I write the above to give a clear picture of the choice that is ever before ME as a T1D-mom.  Do I allow D to make my life completely miserable and bitter?  Or do I make THE CHOICE, the harder choice, to find joy and happiness despite the disease?

(To Be Continued . . .)

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Comments on: "The Choice (Part 1)" (1)

  1. Paula Daffue said:

    Dearest Amy
    What a brave Mom you are – you hold my greatest praises and I send you all the support and good wishes in the world. I too am a Mom with sadness, but quite some time ago now. I have one son who is 27 years old but prior to him I lost two boys. My first son (Hilton) was full term and died at the age of 3.5 weeks – he was incorrectly diagnosed after a bout of diarrohea and given medication that should never be given to a child under the age of 1. As a result of this he died on arrival at the hospital. My 2nd child was born with Downs Syndrom (Ryan) – he was the light of our lives, so special, loving, I can’t tell you how much – he was loved by all and brought laughs and joy to us all. At the age of 3.5yrs he died in my bed one night, he had a heart murmour, at 3.5 he had just learnt to stand up holding on to the coffee table and thought he was the “bees knees”. His loss just about killed me and my wonderful husband. At the time of his loss my 3rd child (Cheyne) was 10 months old and he is all I have now and very special too. So, I know your hardships and wish you the world of good wishes with your fight as a T1D- Mom.
    Fond regards, Paula (South Africa)

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