Birth Story from Shawni Pothier

May 5, 2010

The birth story I would like to relate wasn’t in any particular way out of the ordinary…if you can call bringing someone into the world ordinary.  (Which you can’t). But the actual birth of my fifth baby went pretty much like clockwork the same as the others:

Mother starts trembling and shaking in pure glee when she sees those two pink lines on the pregnancy test. Mother is in elation for months and months, her heart beating practically outside of her body each time she thinks of this precious bundle that will soon be in her care. Mother finds out that she will have yet another girl (yes, very much like clockwork…we already had three of them in a row). She daydreams about the heavenly way this newborn will smell…how her tiny hand will grasp her fingers, how her breathing will sound while curled up on her shoulder. Mother gets overly anxious to meet her baby (as well as sick to death of being pregnant) and gets teary-eyed at the thought of going one more day without a newborn in her arms. Mother bawls to the doctor because she doesn’t want to be pregnant any more (she is eight months along).

The day the contractions begin is welcomed, luckily for the Mother’s sanity, weeks early. The time between contractions shortens, the trip to the hospital is made, the welcome epidural is given, and the baby arrives. Mother is in such rapture she can hardly contain herself. Even the baby’s Father is completely enamored with this fourth daughter he has given his wife (after she begged for two years). Mother’s mother, (the grandmother) who is present at the birth proclaims the baby to be perfect: ten fingers, ten toes, beautiful.

And with that, our fifth child arrived into the world, all safe and sound. Just like clockwork. All was right in the world…for about fifteen minutes. You see, what was quite extraordinary about the birth of our fifth baby was not the birth itself. What took our breath away was what happened after the birth:

The Mother and Father happily recount the birth to each other. “I am so happy,” the mother announces in a dreamy voice. “That was an astounding toupee the doctor was wearing,” recounts the Father.

It’s just about then that the Grandmother, who is watching the baby get cleaned up and checked and measured announces that the Father should probably come over and help her count the baby’s toes. She swears she must be seeing things, but for some reason she is seeing eleven toes instead of the ten she thought she counted when the baby first emerged into the world.

Sure enough, there is an extra pinky toe attached to her left foot. No one seems overly concerned, but of course, the mother and father worry.  They both happen to be natural-born-worriers, after all. Then a strange birthmark is noticed on the baby’s head.  And a couple days later another birthmark shows up on her cheek. “Hmmmm,” think the parents, with more anxiety creeping slowly into their hearts. But the doctors dismiss these peculiarities without much thought. And although the baby’s parents slowly follow suit, the foreboding feeling remains.

The baby captures the hearts of everyone in her midst…the neighbor kids because they are in awe of the spectacle of that extra toe, and the family because, well, she’s theirs, and she brings with her a spirit of love that they can’t enough of. After six months the extra toe is reluctantly removed (the family is a little attached, but they realize their daughter won’t find it so “cute” when she is a teenager). All is well except that the parents can’t help but feel the concern that’s never left their hearts. They worry about developmental milestones…because they are off. Way off.

They have been from the start…smiles took what seemed like millennia to emerge despite the mother’s award-winning efforts to coax them out.  Laughter and cooing were slow as molasses as well. And then crawling is delayed.  Walking or even pulling up on furniture is non-existent at a year…then 16 months…then nineteen. The worry grows a little more quickly. The parents have four other children, you see, and they know what falls in the realms of “normal.”

The baby qualifies for developmental therapy and countless doctors are visited, each offering their own theory. “She’s just a little slower,” concludes one. “She’ll catch up.” Another explains. “Your other children you’re comparing her to were just above average,” assures another. Still another concludes the delays could be due to a variety of different syndromes…none of which really match up. Until one day when a geneticist finds the syndrome that fits. The baby is tested for it and results come back positive.

This is where our family stood last year at this time…February to be exact. And I must say that nothing can really prepare you for a call from a doctor who has evidence that your child has a problem, even if you knew it was true before the phone started ringing. Although it is true that it was a relief of some sorts to know what was wrong, the news wasn’t good. Our baby Lucy has a syndrome called Bardet-Biedl. The characteristics of which, among other things, include kidney and heart problems, obesity and, most heart-breaking for us, blindness.

This last year has been an interesting one for our family. We have grieved in many ways. We have coped. But we have also grown more than I ever imagined…in understanding, in knowledge, in depth of appreciation for life, and most of all in love. You see, the “after-birth” story is the one of more notable drama as far as Lucy’s birth was concerned.

And I share it for three reasons:

1) With each of my other children I worried my heart out my whole pregnancy that something would be “wrong” with my baby. (I think this is universal for mothers of all types.) But once that perfect baby arrives all safe and sound after all our worry sometimes we forget to be thankful.  Thankful that we’re not lugging around oxygen supplies or dealing with continual hospitalizations. We forget to thank God every day that our children can easily learn to walk and jump and do a cartwheel.

2) I never realized that having something “wrong” with your child could eventually, in many ways, help strengthen you and your family more than you ever imagined. As I watch my older children and how they adore and look out for their little sister, as well as how they offer up sweet prayers about her every night, my heart swells up.

3) We are in the midst of fighting for this girl and her needs. Last year my mother and I wrote a book on motherhood called “A Mother’s Book of Secrets.” We are donating all the royalties to fighting blindness and hope to help the research that will enable Lucy to retain her vision. (See I Love Lucy Project or 71 Toes for more information.) Yes, we have a long road ahead of us. Even though our roller coaster ride of emotions and worries has gained a few stops at “peace” and “everything will be ok” along the road, we realize that there will be times of heartbreak over and over ahead of us. But we feel incredibly blessed to call this girl “ours” and we’re thankful she has changed our lives for the better.

From Shawni of 71 Toes.

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Note from Design Mom: for the duration of my pregnancy, I’ll be posting advice, memories and stories about pregnancy, childbirth, adoption and growing a family on Wednesdays. You can find them all by clicking here. I’d love to hear your story or memory or advice, feel free to submit it to gabrielle@designmom.com.

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{ 19 comments… read them below or add one }

1 jenny May 5, 2010 at 2:25 pm

I’ve said it before…and I’ll say it again,
Lucy is lucky {blessed} to have you: A mother who will fight for her–the right diagnosis, break-through, therapy, every little milestone…every little everything.
And, as you said–your family is lucky {so blessed} to have her. It WILL make your family stronger and better.

~best wishes :)

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2 Leigh Moore May 5, 2010 at 2:30 pm

Thanks for sharing this…I enjoy reading your blog and wish you and Lucy and the rest of the toes all the best. :)

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3 Barchbo May 5, 2010 at 2:32 pm

Oh, that gorgeous girl! I just want to kiss and squeeze those cheeks. And she was obviously born into the most perfect family for her. I sometimes think that is the greatest miracle of all.

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4 Meredith May 5, 2010 at 2:33 pm

I remember when baby Lucy was born. I have been a casual acquaintance of Shauwni for a few years and our daughter’s were in dance class together. That little extra toe on that adorable little Lucy was just too cute! But as she describes, as things just weren’t right, I have seen miracles, not miracles of a cure but miracles of faith and endurance and strength. I have watched Shawni and her family thru her blog and occasional social visits and am in constant awe of her perspective and strength as a mother and her family around her. She truly is one of my biggest heroes. Thanks for sharing!!

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5 artfulife May 5, 2010 at 6:00 pm

What a sweet story. We all want so much for our little ones. It is so hard when they have an illness or life altering condition & is so important to count our many blessings and be thankful for the good in our lives. Thanks for sharing your beautiful story.

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6 abby May 5, 2010 at 6:45 pm

You are an amazing mom. I don’t need to “know” you to be able to tell you this. As a mother of two boys, I cried through your post. Thank you for sharing and reminding of us all there is to be grateful. Many blessings and healing to Lucy and your family.

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7 Wendy @ The Shabby Nest May 5, 2010 at 9:51 pm

I have known Shawni for many years….I have always been impressed by her spirit. She is an amazing mother, and the way she and her family have dealt with Lucy’s syndrome is inspirational to me.

I too have a dramatic “after-birth” story with my youngest son who came into this world seemingly perfect, but was diagnosed a few weeks after his birth with a liver defect called Alpha-1 Antitrypsin deficiency. This diagnosis led us to test our other 3 children…2 of which also have the disease. And so I echo what Shawni says, that something being “wrong” with your child can strengthen you and your family in ways you never knew possible.

Thank you for this post.

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8 Emily May 6, 2010 at 7:35 am

You have a beautiful story. Your daughter is lovely. I don’t know your religion, but I wanted to share with you that in the Catholic faith, St. Lucy is the patron saint of blindness and those with eye troubles. The name Lucy means “light”.
Thank you for sharing your story and may God bless you and your family.

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9 Sarah @ Clover Lane May 6, 2010 at 3:06 pm

I love Shawni’s blog…she is such an inspiration in the way she embraces motherhood..no matter what it brings her!

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10 lynne May 6, 2010 at 11:10 pm

What a moving story and what a beautiful little girl… (and I want to say how much I love Shawni and Linda’s book, A Mother’s Book of Secrets – )

Thanks, Shawni! You Eyre girls are amazing.

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11 Denise Metzger May 8, 2010 at 10:34 am

So thankful that you shared your story for all of us who may take for granted the health and well being of our children. I Am a single , adoptive mom of 3 who were cocaine positive at birth and amazingly healthy and well! Sharing helps others when they least expect it.

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12 Jill May 8, 2010 at 11:02 pm

One of my favorite parts of mothering is hearing my children pray for one another. Thank you for sharing your story and Lucy’s story. It reminded me to be thankful for all my kids can do – and have done.

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13 Kate The Great May 9, 2010 at 7:26 pm

I know how you feel, Shawni. Or more specifically, my parents know how you feel. I have Usher’s Syndrome, and the cure for the eyesight part of my genetic disorder is being funded by Foundation Fighting Blindness, too. I raised money through a VisionWalk last year as well.

I also worry fr my child. I don’t know whether he has the same disorder I do.

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14 Caddy Shap May 10, 2010 at 12:50 am

Lucy has vision beyond sight!… and so do you! :) The Lord works in mysterious ways to bless and help us grow. I’m sure this has been a great blessing for you amidst the great challenge of faith!

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15 Melea May 21, 2010 at 12:49 am

Thank you for sharing your family’s beautiful story. I agree with all your conclusions about the hidden blessings in these challenges. My husband and I have been blessed with 8 children…and have decided that really, we all have our “syndromes” –strengths and “handicaps” or delays…and they are all blessings. These heartaches and challenges can turn our hearts to God and each other in a different way than anything else, and I am truly grateful for them. As the years pass, you will also find that you and your children have an understanding, tolerance and empathy for the challenges of others’ that could be gained in no other way. Thank you for sharing, and reminding me:)

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16 Grace June 19, 2010 at 7:05 am

Thank you for sharing your story. I”m sure you have helped many other families that are grieving when they find out that something is ‘wrong’ with their child. I’m a Speech-Language Pathologist and often work with families that have a child with special needs in one form or other so i see some of the struggles firsthand. You have such a positive attitude and great motivation and that will help your little girl tremendously.

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17 becky March 8, 2011 at 7:22 pm

Your blog is beautiful. Thank you for sharing your journey. I have RP and agree, there are some amazing experiences in this journey as well as some times of grieving.

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18 katie press October 14, 2012 at 7:52 pm

hi…..your blog is beautiful….i have a 6mnth old that was just diagnosed with bbs and as you would know i am going through all sorts of emotion.
The uncertainty gets to be the most…not knowing when everything with start popping up with her kidneys and eyesight.
how is lucy doing know? how old is she?
i would love to ask you a million questions only if ur okay with that
katie press

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19 Maria April 1, 2013 at 10:28 pm

Both my brother and sister have BBS. All I can tell you is to teach Lucy independence and allow her to live a normal life, this is easier said than done. My two siblings live in their own aparyment and both work, my brother has a seeing eye dog who is his biggest joy. Both are the happiest people I know, seriously, they are all smiles and laughter. It is hardwrenching to think of them crossing a busy street or taking public transportation, but that lifestyle allows them to never feel handicapped, just normal with a “cool” dog. Both are in their 40′s and doing great. Don’t fear for Lucy’s future she will be just fine. Big hug from my family to yours.

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