The hardest thing

Warning:  This is awful.  I would do anything to keep it from being awful, but I can’t.  Read, or not.

We have spent this last week having a great deal of testing done, and we’ve met with the genetics team several times to go over our results.  Our Puddin, the wiggly little guy keeping me awake at night with his gymnastics, is missing several important parts of his brain.  There are additional issues of blindness and malformation of his face.  The doctors feel that this is likely the tip of the iceberg and part of some larger syndrome, a horrible roll of the dice in development.  It seems to be totally unrelated to my own neurological condition; just simple bad luck.

I don’t know what to do with all of this crushing horror.  Never, never, never could I have imagined this. This is the worst that I’ve ever felt, and just for reference, I once found my mother’s dead body on the floor of her apartment, so that’s saying something.  It’s so hard to reconcile the stark reality of the MRI images with the fact that yesterday I watched as, for the first time, the outline of a tiny foot or elbow tented the skin of my belly and slid slowly across.  The baby was sucking his thumb during my last ultrasound, but he doesn’t have the parts of his brain that he needs to see, or hear, or crawl, or toddle along holding Lauren’s hand, or call me “Mama”.  He may not be able to breathe on his own.

And you know, I wasn’t going to write this post at all because of what I have to write next, because I know that some people will not understand or approve of what I’m going to say.  But this morning as I lay in the grey dawn of our bedroom feeling my son roll lazily within me, I thought that if nothing else, someone, someday will read these words and it might help them feel less alone.  Someone else with a hurt and oh-so-wanted baby who wishes that they didn’t know what to do, but does.

We have made the agonizing decision not to carry our Puddin to term.  The cost is too high, a short life filled with pain and suffering.  There is so much about this that we may never know, but we know enough to know that we have to make a choice.  That for our family, as his parents, doing nothing is not the right thing for us.  That as much as I was unable to protect him from whatever interfered and altered his development so badly, I can and must protect him from this, no matter how much it breaks my heart.  So I will be admitted into the hospital next week so that labour can be induced, we will have a chance to see and hold and say goodbye to our baby, and we will begin the long process of grieving and healing.  And our hearts, I’m told, will one day feel less shattered than they do right now.


About tamarainwriting

I'm a queer, married, child and youth counsellor, in Toronto, Ontario. My wife and I had a beautiful stillborn son and we have an amazing one-year-old daughter. It's a complex journey.
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10 Responses to The hardest thing

  1. Again, I am so, so sorry for what you are going through. You and Lauren are making the decision that you have to for your family and your son, and I hope that nobody judges you for that. Thinking of you all. ❤

  2. Oh no, how incredibly devastating. Sending so much queer love to you and your family as you go through this hardest thing.

  3. I am so sorry that you both have to go through this. It is incredibly devastating and I cannot pretend to have a measure of understanding of how you both feel. Please know that my heart and thoughts are with you during this difficult time. You both made the decision that was best for your family and for your son. That is what unconditional love is.

  4. mamaetmaman says:

    I can’t even imagine what you and your wife are going through. I have been following your blog for a while and appreciate the honesty in all that you share. Good luck next week. I hope that you find some closure in all of it and that you have lots of support as you grieve.

  5. meridith says:

    I am so so sorry. My heart is breaking for you.

  6. Olive says:

    This is so devastating and must have been a completely terrible decision to make. You are doing what’s best for your family and pudding. I wish so deeply that it didn’t have to be so.

  7. My heart is hurting for you so much right now. I wish i would have started reading the opposite way because then I wouldn’t feel like my other posts were so insensitive. that is absolutely devastating. Prayers for your little angle…

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