Heartbreaking news

We've had a week off from the hustle and bustle of everyday life. We had a week to come to terms with the news that our baby boy (due the end of September) has Spina Bifida (sb). Most days are fine. Our baby is constantly on my mind, but I push the fact that he has a "defect" to the farthest corners of my consciousness, concentrating  more on the fact that he is going to help make our family complete. But today, after getting home from a week up north, it's the only thing on my mind. Waiting in the mail was a letter from the perinatologist's clinic I was seen at 11 days ago. The specialist I was sent to that told us that our baby has mylemenigecele. The most severe form of spina bifida. Apparently, they send follow up letters that detail everything that was talked about at our 3 and a half hour appointment. There, in black and white, it was: "Our ultrasound today confirmed the finding of spina bifida, and associated chiari malformation, and clubfeet." Ouch. I don't remember any other words ever said to me that cut me to my core quite like those did. 
Among the mail was a card sent from a well meaning friend. The card said that they were sorry for news and knew we had "to make the hardest decision" we will ever have to make. That no matter what we decided, it would be the right decision for us and our family. I'm not going to lie. I wanted to rip that card up into the tiniest pieces, crumple them together, and burn them in the hottest fire I could build. I don't know how this person meant what they wrote. What decision did they think we had to make? I can tell you how I took it. I can tell you how I took a couple of other people asking me if we were going to continue our pregnancy. NOT well. Why, in God's holy name, would this child I am carrying- MY CHILD- be any less worthy of life than any other child without a "defect"?! So my child has spina bifida. Would you abort your child if you found out they had an extra toe? I know the difference in diagnoses are huge, but my child is not any less loved or less perfect in my eyes. If you know me well enough to have the audacity to ask that question, then you would already know the answer. If you don't, you obviously shouldn't be asking it!
Waiting to hear what was found on the ultrasound was terrifying. A million different thoughts run through your head. I was actually relieved (a little) to hear that it was sb. At least it is compatible with life. At least I would get to hold, kiss, and bring home my little guy. That being said, I'm still very angry with all of this. I'm mourning the loss of the life I had imagined for my baby boy. I'm angry and sad that he will have to endure so much in life. He will have so many obstacles and I won't be able to fix everything. No parent wants this for their child and I am no different. I pray for the strength and acceptance I will need to help my little man live his life to the fullest. 
My thoughts, feelings, my life, really feel jumbled right now. Some days, I am accepting of the diagnoses. Other days, I can't believe it's happening to our family. I did everything "right". I took a prenatal vitamin before pregnancy. I didn't go in hot tubs, or saunas, or drink, or smoke. The hubby and I don't have a genetic history of birth defects. So why is this happening to us? God knows I am not a patient person, so I don't understand why he would give us a child that needs parents who are. I just don't understand.

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My life- as a wife, mother, sister, caregiver, daughter, career woman- uncensored.

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Liberal Catholic. Working mom. Chronic pain warrior. Opinionated introvert. I speak fluent sarcasm. I'm married with two kids- a girl and a boy. My son was born with Spina bifida, hydrocephalus, Arnold Chiari malformation, and bilateral club feet. I may blog about food, politics, religion, medical updates, or our life in general.

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