Miss Mercy is almost 7 months old! Can you believe it? Time has flown by, and I still look at her in awe of how fitting her name has been.
Mercy – throughout a difficult pregnancy
Mercy – throughout a rough beginning, full of surgeries and 6 weeks of NICU
Mercy – throughout learning to feed from a special bottle
and now Mercy – with a new diagnosis.
It began within a few days of her birth. At least for me. No one else seemed to notice. But mothers know. It was her eyes that caught my attention. As soon as she was able to open them, they looked different to me.
As she became more alert, I began to see things in her facial features that seemed so very different from my other children – a flatness at the bridge of her nose – cheeks that were bony in the places that I usually kiss – an exotic look with piercing blue eyes that seemed to see right through you, yet see nothing at all.
But, everyone kept telling me how every child looks different. The fact that I am a mother of 10 seemed lost on them. And so, I silently stared at my baby girl, wondering who she was.
I also chose to only share certain photos via social media and on the blog. Photos that made Mercy look completely “normal.” Photos where she is looking away. Photos where she is lying down. Photos where her eyes are focused – fleeting moments captured by my daughter’s skillful photography lens. And through tears, I told my 16 year old daughter I wanted her to take beautiful photos of Mercy so that my precious little girl never, ever looked back and thought she was ugly. (and even as I type those words now, I cry.)
Sitting in her hospital room, I did what every concerned mother in that hospital does…I googled. I started with Pierre Robin Sequence – the diagnosis we knew she had. I noticed there was a connection with a syndrome called Stickler Syndrome. However, the photos online did not look like my Mercy. They were of children and adults with very flat faces, very turned in eyes, and there was talk of short stature and hypermobility and heart conditions and hearing loss – things we did not see in our daughter. But try as I might, I could not shake the feeling that what I was seeing in Mercy resembled something Stickler-like. And so, the day before we were dismissed from NICU, I asked if the genetic testing had come back for her – something I assumed had been done – but it had not. The attending physician, realizing it had been overlooked, ordered the test, and I felt like finally I would have the answers I was looking for. A yes or a no – and I could move forward.
At her check up several weeks later, I learned her genetic test was “clear.” I breathed a short-lived sigh of relief before realizing (thanks to my interest in science as a teenager) that they might not have done the test I needed to be certain she did not have Stickler Syndrome. Sure enough, she had had a microarray done. That tests for additions and deletions. Stickler is a “spelling error” in the gene. A microarray does not look that closely. And so, there I was again…wondering.
The day before Mercy’s distraction surgery (where the hardware that pushed her jaw forward so she could breathe was removed), we went to the Genetics clinic. If you read that post, you will hear the words of a mom who felt relieved because clinically, the doctors didn’t see much that resembled Stickler Syndrome. What you do not read is that the next day at her vision appointment, my whole world fell apart.
The ophthalmologist said that based on her eyesight being severely myopic (near-sighted – as in -14.5 near-sighted, for those of you who know what those numbers mean), she more than likely DID have Sticklers.
For 48 hours I had allowed myself to believe Mercy just looked a little different from her siblings. I had allowed myself to believe what I saw in her eyes was just a NICU baby learning to adjust. I had allowed myself to believe that once her palate repair was complete at the one year mark, that would be the end of Mercy’s medical care.
I left that appointment bawling.
And I felt stupid and petty for bawling.
Some day I may feel like allowing myself to be uber vulnerable and share exactly what went through my head following that appointment, but I’m not there yet.
I came home from that 3 month appointment and spent a couple of months sitting smack dab in the middle of a river called Denial. I tried to convince myself the eye doctor was a quack and there was no way I was going to take Mercy back to her 6 month appointment. I told myself over and over again that Mercy was fine – all she needed was time.
But, then at 5 months, I turned a corner. I had done my grieving. It was time to get to work. I posted this photo of Mercy on my Facebook page and began my series on being a NICU mom and realized I KNEW who this little girl was, and no syndrome was going to change that.
At 6 months, we took her back to the ophthalmologist and she saw a retinal specialist at the same time, because even without a definite diagnosis of Stickler Syndrome which affects the collagen in your body which affects your retinas, having that level of myopia puts anyone at risk for retinal detachments. The specialist said she would need to be examined under anesthesia and her retinas potentially lasered where there were weaknesses. (This will happen very soon.) The ophthalmologist confirmed that her prescription had not changed, and we went from there to the pediatric optical shop and picked out her first pair of glasses.
The day before her glasses arrived, the geneticist called and confirmed she does indeed have Stickler Syndrome – Type 1 – a mutation of the COL2A1 gene – the most common form of Sticklers.
And I didn’t even flinch.
There is obviously much more to this story. There is the question of where did this genetic syndrome come from. There is the question of what will her future look like and how will it manifest itself since Sticklers varies greatly from patient to patient. There is the struggle of keeping glasses on a 7 month old who has a syndrome that makes her nose just a tiny button of a thing. There is a lifetime of preventative care and maintenance of her symptoms.
But, there is Mercy.
And that is all that matters.
If you would like to read more about Mercy’s story and her journey with Pierre Robin Sequence and Stickler Syndrome, take a look at this page and bookmark it for future updates!
Jodie Hansen says
Oh Mama, thank you for being so open and vulnerable. I am a Mom to an extra-special little guy. I was in denial for the first few months after my little guy was born. I have since learned that it is alright to be sad and mourn the loss of my expectations for my “non-typical” child and still love him like crazy for who he is.
My boy was my 2nd child and we have since had 5 more children. I still have moments of mourning especially each time another younger sibling passes him up in abilities. But He has also been such an incredible blessing to our family.
I will be praying for wisdom for you and your husband as you adjust to this new normal in your family.
RD says
Mercy is beautiful. Truly gorgeous. Love these new photos! I don’t know anything about Stickler, but I know she is “fearfully and wonderfully made”, designed by the hand of God.
Donna says
Amy, these handy dandy ear pieces are what FINALLY saved us from constantly pushing up our daughter’s glasses https://www.amazon.com/gp/aw/d/B00LWQSI7I/ref=mp_s_a_1_2_a_it?ie=UTF8&qid=1494932168&sr=8-2&keywords=ear+pieces+kids+glasses
You can find them in colors and various prices on Amazon and Etsy. They saved the day! Our little one wore the exact same color and style of glasses at that age. Adorable!
I’m glad you finally have a diagnosis. As a special needs mom, I know how important it can be to know exactly what you’re ?fighting. We knew before birth that our daughter had Spina Bifida, but we had no idea the extent, how difficult the pregnancy would end up being and all the other separate issues she would end up with because of pregnancy issues. It’s been quite a miraculous journey, but now she’s 5 and a joy to everyone she meets. I wouldn’t change anything about our Hope. God is good! Blessings and prayers for you as you navigate the foreign land of special needs mommy-dom..
Amy says
Just ordered some yesterday!
JW says
Just wanted you to know that, I appreciate all the sharing that you do. I came across your page after suffering a miscarriage and I have followed ever since. I know that I can not understand all that you are going through, but I wept through your story and rejoiced at your strength. I praise YAHfor you and your family. Moms notice many things, that others don’t see. But I think Mercy is truly beautiful.
Charlotte Moore says
I have never heard of this. I sure hate you all are having to deal with so much.
Yes, thank the LORD for HIS MERCY. GOD BLESS you all.
Lisa says
As a fellow large family mama with a child with a rare condition (Angelman Syndrome in my boy’s case), I wanted to chime in an say that Mercy is what gets us through each day. I can’t imagine walking this journey without the Lord, and I’m thankful that you have Him to lean on.
Thank you for sharing your struggles and acceptance. It’s definitely not the path any of us would have picked, but we can trust that God has a plan, and did not make a mistake.
Prayers for your sweet family!
Katina says
God bless you and your beautiful baby. I can’t believe she’s 7 months now. She’s sitting in a chair like a big girl. I will keep you and your family in my prayers.
Karyn says
I pray that all of you will continue to feel God’s strength and comfort. Thank you for sharing your experience. God bless, Karyn
Babychaser says
Those are beautiful pictures of a beautiful baby girl! So encouraged by your attitude. God will be with you every one of those steps!
DonnaJ says
When I look at that sweet little face-I see kissable chubby cheeks and wide beautiful eyes.
Eli says
Sometimes the struggle is not knowing, but knowing something is not right. My son has asperger’ s and ADHD. He was diagnosed with the ADHD at 3.5, but no one wanted to do anything because he was too young. It took 6 months and 4 peds to get one to send us to a specialist who could help him. Then it was driving an hour each way for 2 years because he would cycle through the meds too fast. Even when that was figured out like you I knew there was more. When I would tell other ADHD mom’s about the severe behavior issues I would here, I’ve never had to deal with that. So you feel all alone, with no one to offer advice. It wasn’t till he was 9 before his ped finally agreed there was more to it, and tested for asperger s. Then I had my answer, but like you that was only the beginning.
Kim says
Strength to you mama! And blessings ? I don’t know what sticklers condition is, but my little boy was born with Laryngomalacia, a floppy epiglottis. It caused strider breathing and acid reflux. As a mother, we look at our children with love and a careful eye, worried that something may be wrong. I was terrified for two years he would stop breathing and I would lose him. Now, I’m making an appointment to have him tested for type 1 diabetes. I’m frightened, because he has signs and just like you noticed something different about your Mercy, I notice differences in my Conner. I’ve been surviving the jokes about “that poor little boy has everything ” (umbilical hernia as well). I take each step with a
grateful heart. My prayers are with you, mama! Sending my love to you and your baby girl!
Amy says
Oh sweetie – I bet those “jokes” aren’t real funny, huh? 🙁
Cari says
Thank you for sharing. Someday when your ready, I along with many others I’m sure, would love to hear the rest of the story, your thought and feelings as your emotions gushed out. Some of course will criticize, but the rest of us will be touched by the realness and humbleness of where you were at.
Amy says
I love how God gave you Mercy. She is beautiful in every way and you are a wonderful mother! You always inspire and encourage me!
Laura says
God bless you for your courage in sharing this! Love and hugs and prayer for you and your family!
jodie says
I think I know what was going through your head that day.
I remember thinking “With God’s strength, I know I can do this, this new path, but I just don’t think I want to.” It had nothing to do with the love I had for my new baby. It was more the fierce hate I had for the diagnosis and uncertain future. But time to put one foot in front of the other and prayer does get you through the “grieving” – and, I agree, it does sound petty because your baby is here (what more could you want?).
There are still times when the “if only” comes back to bite me, but 99% of the time, life with our special boy is wonderful, busy, challenging at times…but wonderful and we are thankful for that.
Mercy is beautiful and you will find that the way SHE deals with her challenges will fill you with pride, love and admiration. Indeed she is “fearfully and wonderfully made.”
Shirley says
Mercy is an extra special beautiful doll! Teary-eyed from reading a mother’s heartfelt post of pure love and determination to do what she can for her daughter.
Amber says
Thank you for sharing! Our son, Andrew, was born with Spina Bifida and we did not know until the day he was born. He is now 19 months old and doing amazing but it has been a long journey. He has had 2 surgeries, 21 days in the hospital, 8 weeks of casting, 4 Spina Bifida clinics(a lot of testing), and a years worth of physical therapy. He is truly my hero! He has to wear AFO braces and can walk with a walker and he doesn’t let anything stop him. It was not always easy but the grace of God has helped us through the past 19 months! Our whole outlook on life has changed! We will be praying for your sweet Mercy and your family! She is absolutely adorable!!
Barbie says
Thank you for sharing this update. Mercy is so beautiful and I know the hand of the Lord is upon her. Blessings!
Diana says
Wow. That’s big – a diagnosis on top of a diagnosis. We will be praying for you as you navigate these new waters. You are doing an amazing job, and Mercy is beautiful.
I too have been down this path. Our second-born has severe special needs that we did not know about at birth, and I was in denial for a VERY long time (10-12 months), even though I knew deep down that something wasn’t right. It takes a lot to work through those emotions and move ahead into a new life. There is a new normal, however, and a new life of blessing on the other side. And, as you say, there is Mercy! Always God’s mercy in the midst of the storm.
Thank you for sharing your journey with your sweet little one!!
S.T. says
After four years of specialists and appointments, our boy was finally diagnosed correctly a few days before this past Christmas. Can someone tell me or lead me to where I can find help to know HOW to move beyond all the emotions and confusion and find the new normal. Thank you!
Reggie says
For me, it was recognizing that God is still God. He hasn’t changed simply because my own world seems to have been turned upside down. I cling to the promise He gave me that His plan was different than mine, but better than mine. I have found comfort from John 14 and Isaiah 55:8-9. Do I still cry and doubt and wonder why me? Yes. But not nearly as often. I believe this child is a promise. That God has a plan for him that supersedes anything I could imagine. When those dark moments come, that is what I cling to, because that is the truth. May God bless you and comfort you! May you again know His peace which passes all understanding!
S.T. says
Reggie, thank you very much! I will copy down and read the verses you mentioned. I appreciate what you shared so much. I haven’t known how to handle this.
Thank you! I hope your child is doing well.
Chris Waughtal says
ST-it will take a long time to process and grieve-just as with any loss. I scoured the web for blogs of special needs parents, and read all their posts about the gut-wrenching pain, numbness and denial they went through. Key Ministries is a blog that is written by and for special needs parents-VERY GOOD!!! Ellen Stumbo has lots of posts written as the mom of 2 special needs children. There are many good ones out there-lots of good books too-google and pinterest were my best friends as I searched for someone to help me deal with the emotional issues of raising our special children
God Bless you
Amy says
Thanks, Diana.
Clarissa West says
I totally understand this. The grief. She is absolutely beautiful! Expect to experience more stages of grief throughout her life, but blessings will abound, too! God has great things for you and your Mercy girl!
Amy says
Thank you, Clarissa. ((HUGS))
Melissa says
“Some day I may feel like allowing myself to be uber vulnerable and share exactly what went through my head following that appointment, but I’m not there yet.”
I have a child with Tuberous Sclerosis Complex. I remember coming home and going on the internet and seeing every “worst case scenario” and assuming that would be my daughter. I felt sorry for myself and even envisioned my daughter on the small bus that comes around our neighborhood to take children to school for their special programs. I finally had two people in my life, a co-worker, and my aunt tell me that I had to stop crying and worrying, that worrying was not from God”. That made me angry. What did they know? They weren’t going thru this with their own children. How could they know? They had explained that having full faith in God meant not worrying. Worrying was satan telling me everything that could go wrong and making me feel sorry for my situation. That was SO true. God was in charge and HE had this. I didn’t have to battle this awful disease on my own anymore. I fell on my knees and asked for his forgiveness and mercy. I asked him to take this from me and to heal my baby.
What is in a name? God gave two of my aunts a message for me one night around 2:00 am he woke them both up. They lived about 4 hours away from each other and he woke them both at the same time. He told them to tell us that we needed to pray about her name. They called each other and then called my mom. She told me they said we needed to pray. So we prayed. Her name came to me when we were leaving her NICU room. I pressed the button for the elevator to go back to my hospital room. As soon as I hit that button the name “Megan” came to me. I didn’t tell my husband and I just went back to my room. I thought why in the world would the Lord give me a name like Megan? It wasn’t biblical and it didn’t have any meaning to me. Later in my room I went into the bathroom and like a ton of bricks falling on me I had this heavy burden that came over me. “MEGAN”. I started crying and I went out into my room and told my husband that the Lord kept telling me her name had to be Megan. He started crying and said he had the same feeling. Later that day we told our parents. His dad started laughing and said he had been telling everyone at work all day that her name was Megan and he said…I don’t even know how I knew that. It just came out. We had planned on giving her a first name to go with Mackenzie that was going to be her middle name. We were going to call her “Kenzie”. When we got home from the hospital we tried calling her “Kenzie”. Let me just tell you…the Lord is in control. I couldn’t even say the word Kenzie. Every time I looked at her the Lord put “Megan” on my tongue. My husband was the same way. The Lord is in charge in all things….even in a name.
Against all odds….against the doctors claims…against what we saw as she had seizures and three heart tumors…against everything we read and against all the worst case scenarios….Megan will be 15 this August. She is a happy, healthy, teen who wants to be a real estate agent that flips houses like Chip and Joanna Gaines. She loves the Lord and so do I. I can now confidently say this….Don’t worry, it isn’t from God. He has this. Give it all to him and he will show you MERCY. He will take away all your burdens if you will just lay them at his feet. My favorite bible verse(s)….Mathew 11: 28-30
Amy says
I have a Megan too. 🙂
Stacie Headley says
Hugs to you! You are exactly the mother that God ordained for little Mercy, and He is faithful to complete the work He is doing in you and your precious baby girl.
We, too,have a special gift from God in our family. Our 6th child was born with what we were told were neurological delays that would improve with time. Despite my expressed concerns,I left the hospital with a child who was unable to swallow more than a few drops of milk at a time without choking. She hated to be held and stared off into a silent world. After nearly four years of praying and struggling, our occupational therapist pointed us to a neuropsychologist who confirmed what I felt I had known since infancy. Our sweet daughter is autistic. She is nearly 8 now. The past years have had their share of tears, of grieving for the personality that is locked away where we cannot reach, of nightmares for her safety. But, even more so, there is joy in every hard-fought milestone, there are siblings who have grown in compassion far beyond what we could teach, and there is a loving God who shows Himself faithful every time our little girl sings to Him from her spirit ?. We pray God will illuminate the joy in your journey with Mercy!
Christine says
Golly, I just commented on a post I saw on Pinterest that was from 2010! Anyway, I believe you have a new follower. I will come back to read through your blog a bit later. I need to put my toddler down for a nap.
Cindy Sheneman says
She is such a BEAUTIFUL baby and I have prayed for her many times and will continue to pray for her and you!!
Lauren Rowan says
I had a feeling that “no news” was not necessarily “good news” these last weeks. I’m so sorry for your grief and pain; and profoundly glad that you have landed at that place where you can say: she’s here. That’s what matters.
Love is a funny thing. It will break and heal your heart all at the same time.
May God give her (and you) the deepest joy in his presence in and around your family as you walk beside this stunningly beautiful baby carrying her cross.
All love.
Aimee says
I just wanted to say that I see nothing but absolute beauty when I look at her pictures! She’s gorgeous and full of life!
Christine says
Thank you for sharing Amy. I’ve walked beside you from a distance often over the years. My 10th was born in March of last year. I can appreciate her glasses prescription, two of our girls are around -12. Somebody makes frames that have flexible pieces that kind of “hook” around baby’s ears, rather than the traditional frames that just rest on top of one’s ears. I know you know this, but I’ll say it again. It could be worse. I know you know how to find joy even in overwhelming circumstances. Allow the grieving to have it’s moment, and then move on and rejoice in being able to snuggle your baby girl. Thank you for taking the time to encourage so many others in their walk.
Amy says
Thank you, Christine! We are looking into Tomato Glasses for our next round. And yes, you are right…it could be so much worse.
Krystle Hummer says
She is so lovely. Good job Mama!
Marion says
Thank You for sharing beautiful Mercy’s story. God Bless you and your family.
Marion
Marilyn says
Mercy is a beautiful child. Thank you for sharing Mercy’s story. God Bless Mercy and her family.
Marilyn
Nicole says
You have helped me so much in your comments back about homeschool. I am praying for your little girl and her glasses look absolutely adorable :).
Stephanie says
She’s so precious! What a little sweetheart. My son was born with a heart defect that was corrected by open heart surgery when he was 5 days old. He is now 8 weeks and doing amazing. I hold him as much as I can. He is such a little miracle! I am praying for your little Mercy and for you. His mercies are new every day
Amy Sparks says
God bless you and your beautiful girl. Praying for grace as you walk this road.
Reggie says
Oh, Amy. I loved what you said about you knowing your daughter and no syndrome or diagnosis would change that. Those were my thoughts EXACTLY as I raised my own PRS baby. I didn’t even want others to know about her diagnosis because I didn’t want them to see her as different or treat her differently. I wish you could see and hear this girl of mine. She talks from sunup to sundown, believes rules are merely guidelines and can wrap even the hardest of hearts around her little finger. No diagnosis can change that. She is who she is because that’s exactly who God made her to be. God bless you and your family! Mercy is beautiful!
Amy says
Perhaps someday I WILL meet your PRS girl! Thank you for your kind words, Reggie!
S.T. says
I am so sorry that your sweet baby Mercy has additional medical issues. I will pray for her. Your blog is such a blessing to me, and I’m sure to so many others. Thank you for sharing your heart and life with us all. I appreciate your honesty so much. Baby Mercy is beautiful, and your older daughter takes amazing photographs!
H says
Amy,
Mercy is beautiful and I LOVE her name.
Nola says
I am so sorry you are going through this. Honestly I’ve always looked at the photos of her and thought about what a gorgeous baby she is. That doesn’t change just because she has this diagnosis.
Natalya says
Someone once told me about John G Lakes Ministry and it changed my life.
I too was searching for answers to ‘where did all this come from?!’
And after listening through the divine healing training (DHT) I received soooo many answers. It will help and grow your faith in God as the Healer.
I pray you take the time to listen to this seminar.
I will be standing with you in faith for Mercy’s complete healing, down to the DNA level.
http://www.divinerevelations.info/documents/healing/jgl/jgl_ministries.htm
Elizabeth Clare says
I’ve always loved your blog, your family, and following you through the years. Thank you so much for this story. I think your daughter is absolutely beautiful and I’m not just saying that. Her eyes are gorgeous and that sweet round face looks so kissable.
Our 5 year old son contracted Epilepsy this year and we are fighting it tooth and nail. It is so hard to see your little one that you love so much suffer. You are in my prayers sweet mama!
A says
She is so precious. I just love the picture of Mercy in her glasses!
Sheila robnett says
Mercy is such a beautiful little blessing! I understand your journey all too well. My middle son, 9, was born wth Pierre Robin and was in the NICU for his first three months. Since then he, his 11 year old brother, and myself have been diagnosed with Stickler’s Syndrome. There have been endless surgeries, specialists, therapy sessions, and tears these past 9 years. There has also been much laughter and memories shared along the way. It’s nice to be able to meet other people who can relate when life is tough and remind us that we are not alone. Thank you for sharing your story.