Comments on: Birth Story from Shawni Pothier

By: Maria

Maria — Tue, 02 Apr 2013 04:28:11 +0000

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.

By: katie press

katie press — Mon, 15 Oct 2012 01:52:51 +0000

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

By: becky

becky — Wed, 09 Mar 2011 02:22:06 +0000

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.

By: Grace

Grace — Sat, 19 Jun 2010 13:05:10 +0000

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.

By: Melea

Melea — Fri, 21 May 2010 06:49:54 +0000

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:)

By: Caddy Shap

Caddy Shap — Mon, 10 May 2010 06:50:45 +0000

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!

By: Kate The Great

Kate The Great — Mon, 10 May 2010 01:26:03 +0000

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.

By: Jill

Jill — Sun, 09 May 2010 05:02:43 +0000

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.

By: Denise Metzger

Denise Metzger — Sat, 08 May 2010 16:34:14 +0000

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.

By: lynne

lynne — Fri, 07 May 2010 05:10:36 +0000

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.

By: Sarah @ Clover Lane

Sarah @ Clover Lane — Thu, 06 May 2010 21:06:24 +0000

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

By: Emily

Emily — Thu, 06 May 2010 13:35:59 +0000

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.

By: Wendy @ The Shabby Nest

Wendy @ The Shabby Nest — Thu, 06 May 2010 03:51:46 +0000

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.

By: abby

abby — Thu, 06 May 2010 00:45:46 +0000

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.

By: artfulife

artfulife — Thu, 06 May 2010 00:00:19 +0000

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.

By: Meredith

Meredith — Wed, 05 May 2010 20:33:50 +0000

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!!

By: Barchbo

Barchbo — Wed, 05 May 2010 20:32:02 +0000

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.

By: Leigh Moore

Leigh Moore — Wed, 05 May 2010 20:30:03 +0000

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

By: jenny

jenny — Wed, 05 May 2010 20:25:16 +0000

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 :)