Tuesday, May 8, 2012

A Mothers Guilt

There aren't many things that make a mother feel more guilty than when you are told your child is going to be born with a birth defect or some other medical issue. What is even harder is admitting to family and friends that your unborn baby has issues.

For me, there was an incredible amount of shame that came with Eli's diagnosis. I wanted to cry (and often times did) after I was finally able to tell people about Eli's health issues because that person would follow up with the dreaded question, "What causes that to happen?" Their questions somehow implied it was something I did in my pregnancy to make this happen to my child. That I didn't do what I was supposed to prenatally to give my child the best shot at a healthy life.

I thought I did everything possible to insure I had the perfect pregnancy. I stopped taking the medication I was prescribed for my epilepsy because of the risk of birth defects that are associated with it. I went to my first prenatal appointment 2 days after I found out I was pregnant (I was THAT excited!) and just 5 weeks along. I took my prenatal vitamins, I followed a very strict pregnancy diet, and gave up my Starbucks habit.



Spiritually, I thought I had crossed every T and dotted every I. Just one year earlier, I went on a 10 day mission trip to Mamelodi, South Africa. An experience that dramatically changed the course of our families spending, the way we lived out our families legacy, and my life forever.



I was part of not one but two small groups. My husband and I committed a substantial amount of money to our church's campaign to help fund rescuing girls from sex slavery, helping our friends in South Africa get the healthcare they need, and help our neighbors in Cincinnati get out of poverty. Both my husband and I spend time volunteering and pouring into others.

Surely after all of this God owed us a perfect baby and a perfect pregnancy right?

Truth is, God doesn't work on a barter system. If we do X God doesn't guarantee Y. We live in a messed up broken world.

I have had to learn and accept that God's grace is enough.

It's by His grace that Eli "only" has clubfoot. It's by His grace that Eli was healed from the potentially life threatening kidney problems he was diagnosed with. It's by His grace that we were able to have the best doctor in the delivery room, at the perfect time, to save Eli from dying during delivery.

We were given the perfect baby. He was just wrapped in a different package.



It wasn't until recently that I was able to admit to my husband the guilt I carried throughout our pregnancy and the embarrassment I felt for having a baby with a birth defect.

I was even reluctant to post pictures of Eli on facebook that showed his feet for fear of judgement from others.

I had some deep rooted guilt/shame/fear going on.

Once I accepted that we live in a broken and fallen world and that God really does love Eli more than I could possibly ever imagine, I was able to let go of some of that guilt.

I'd be lying if I said that I still don't feel those twinges of guilt each time we have to put Eli's braces on and he cries. When those moments arise I have to remind myself, as hard as it is for me to imagine, that God loves me and Eli far more than I ever could and that He is using this for something amazing.

And for our family, that is enough.

10 comments:

  1. This is just beautiful, Heather! As much as we hate to admit it, sometimes "bad things" are meant to happen to us. And they happen for a reason. I always come back to the impact of infertility on my life--I too have spent a lot of time feeling VERY guilty for having a broken body that cannot carry a child.

    I spent a lot of time being very angry with myself and with God for, in my eyes, doing this to me. I still struggle with the idea that bad things happen to good people--or that good people are denied wonderful things, like children. I don't know why God made me or my husband this way, just like you may not know why God made Eli this way. I find peace in knowing that it just IS--and it's not my job to figure out WHY.

    Our greatest blessings are often tucked deep within our greatest disappointments. I am stronger, better and more resilient because of my experience and I'd venture to say that you are too. I stand up for myself more. I say what I'm thinking, because I know it's MY job to tell people MY story in MY words. You have been given the gift to tell Eli's story and have done it so well.

    God uses us as vessels to remind others to count their blessings--which is what I always remind people. Don't feel guilty that you can have something that I can't. Be thankful that you have a miracle in your life.

    Keep up the great work---this blog is an amazing place!

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  2. Thank you Emily! You are right. I have changed as a result of this. This experience has made me appreciate my babies more than ever and having a husband that I adore more than anything. Thank you for your sweet words. You and your husband continue to be in my prayers.

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  3. This was beautiful Heather, and something that has also been on my heart lately. I had actually been working on a blog post very similar to this for a few weeks but just haven't been able to face completing it... or putting it out there. You say it so well and so honestly, I admire that so much. Here is a little bit of my thoughts - I think I can put this one to rest now that you said enough for both of us. And I rejoice with you that Eli "only" bas clubfoot.

    When my healthy baby boy was born, I was so grateful and thrilled, and thought he was absolutely perfect. And even when the doctor was telling me that we had to do crazy sounding treatments for this "birth defect," I still believed he was utterly perfect. It was really hard to find a way to reconcile the two. I remember looking down at my sweet boy one day when he was about 2 months old. He was the most beautiful thing I had ever seen, and I was convinced that I could not love him any more. I was trying to tell a friend the latest update about his feet, and I burst into tears saying, "my child is NOT defective." No matter how mild or severe his feet were, I could not and would not accept that label. Yes, of course I know that labels can be helpful and accurate. But in this case it was almost like they were bringing him down. And no matter what, I would never change the way I viewed my precious son.

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    1. I am so glad that I am not alone Victoria! Thanks for your comment :)

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  4. Heather - We just found out that bilateral club foot was detected on our 20 wk ultrasound. While the guilt and sadness are still going strong, the the initial shock is gone. We are starting to do more research on club foot, treatment and doctors. We came across your blog. It appears that you live in Cincy. We are from Dayton, so we're hoping you can help. Would you be able to provide us with some info on what doctors (orthopaedic surgeon) you are using, your satisfaction with the doctor/treatment, when you made initial contact, etc. Any help you can give would be greatly appreciated. Thanks!!!

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    1. I'm sorry to hear about your ultra sound. I remember that phone call like it was yesterday. The first thing we did when we found out was call Cincinnati Children's Hospital after we did research on surgeons. We came across Dr. Mehlman's group and set a consultation with one of his nurses. The nurse we met with, Carrie, was amazing and super helpful! We felt really comfortable after talking with her and decided to get Eli on their list of patients to be seen once he was born. Dr. Mehlman's team has been nothing short of a godsend. They have been beyond amazing. His nurses call me back often within a hour, "dry" my tears when I call them crying over a problem we are having, called the brace shop to fight "battles" for us, dealt with our insurance company, and have become almost like family! Even the casting team was amazing. They listened to our concerns and modified Eli's casts to suit our requests :) Eric and I could not have gotten through Eli's clubfeet without them. They are WONDERFUL! I'd be happy to get Carrie & Marsha's number to you to set up a consultation (if you want to drive all the way from Dayton to Clifton). I can say with all my heart, they are worth any drive. There are family's that drive 5-6 hours every week just to see Dr. Mehlman's team, they are THAT good! I would recommend them to anyone who asks. I know they only can handle a certain number of patients which is why we took the initiative to get a consultation and have Eli's name on the list :) If you can't tell, we love them... well as much as you can love a doctor who casts your baby every week :)

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  5. Heather - Thank you so much for your quick response and info! Distance will not be a significant factor in where we get treatment. We want to make sure that we get the best of the best and if it's as close as Cincy, that's great. If it's Cleveland, Iowa, or anywhere else, we'll make it work. We will definately want the phone number for the nurses. I looked up Dr. Mehlman and Cincy Children's and I do have a lot of questions for you. Would you mind if I emailed you or if we could talk via phone? I don't want to bombard you with questions, but I can't promise anything! :)

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  6. Ask away :) I'm happy to be an unending resource to you :) my email is: mrs.heatherbarrett@gmail.com I'm happy to chat on the phone ( or meet up) too. Just shoot me an email and I'll send you my number :)

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  7. I recently found your blog and this post really hit home. Our son was born in 2008 with bilateral clubfoot and it was the hardest thing I've ever gone through. We found out a little over a month ago that our baby due this September is going to have a right clubfoot. Some think that since we've been through it once it'll be easier, but I'm absolutely heartbroken. Thank you for being so real with your feelings. I absolutely relate. <3

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    1. I am so sorry to hear that :( My heart breaks for you. I can't image how hard and daunting it is to face this again. Our biggest fear in having another child is that it will also be born with clubfoot. I just know my heart would break all over again. Know that our family will be praying for you. Big Hugs from Ohio, Heather

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