Story for Peekaboo

I had a great opportunity to share Corinne's story with a local NWA magazine called Peeaboo, below is the publication. Go Where We Can Shine...Corinne's Story By Emily Moll My second child, Corinne Sophia Moll, was born on July 12, 2011 in Rogers, Arkansas. I had a great pregnancy, with no complications and great medical care. The minute my daughter was born my life changed forever. Corinne was born not breathing and her little heart not beating. Within hours, she had to be helicoptered to Arkansas Children’s Hospital in Little Rock. Corinne’s immediate medical concerns were seizures, low muscle tone (hypotonia), a “hiccupy” method of breathing, and some distinctive facial features typically associated with chromosomal or genetic disorders. Within the first few days, her doctors ruled out chromosomal issues that typically lead to a very short life expectancy. Thinking the worst was behind us we celebrated that night with champagne. However, as the days progressed, our hopes of a healthy child began slipping away with each discovery of a new medical issue. Her muscle tone was decreasing, her hiccupy way of breathing lead us to find three holes in her heart, and MRI’s of her brain were not promising. At this point we were waiting for genetic results to come back, which would give definitive answers to her condition. As we waited the doctors’ goal was to keep Corinne stable; breathing on her own without a ventilator and her heart failure under control. If Corinne was put on a ventilator there were concerns she would never be strong enough to breathe without it and if her heart failure continued to worsen we would have to start considering open heart surgery. Survival of a heart surgery was slim, and if Corinne’s condition was terminal an extremely invasive heart surgery with long healing time was personally not an option for us. On July 19, one week after Corinne was born, we were delivered some of the worst news we had received yet. Corinne had her third MRI, and this one showed severe abnormalities of her brain. My world fell out from underneath me. Realization that my daughter would not live a “normal, healthy life” hit, and hit hard. With all of Corinne’s symptoms and this third MRI it lead doctors to believe that she had an extremely rare genetic disorder called Zellweger Syndrome, but we would have to wait another week for the genetic results. At this point Corinne was not able to breathe on her own and was put on a ventilator, she also was not considered a successful candidate for heart surgery. My husband, Ryan, and I started to make plans to temporarily move to Little Rock. Ryan would commute back and forth between NWA and Little Rock for work, nearly a four-hour drive. We rented a furnished apartment and hired a babysitting service to stay with our 2-year-old son Evan while I would be at the hospital with Corinne. With this plan, I would be alone most of the week and Ryan would come to Little Rock for long weekends. I was very excited to get Evan to Little Rock because I missed him so much! As much as I needed to be there for Corinne, I also desperately needed to be a mother to Evan. But, before the move was complete there was yet another change in our forever changed world. Exactly two weeks after Corinne was born we were given the final diagnosis. She had Zellweger Syndrome, a terminal disorder. There were no cures or treatments. Average life expectancy was 6 months, but, due to Corinne’s heart failure, our time with her would be much shorter. Exactly how short, they could not predict. At this point there was nothing medically that could be done for Corinne and her next health care options was palliative care, which is similar to hospice. We asked the doctors something that had been on our minds for a while: Could Corinne get the care she needed closer to our home? The answer was yes, and we were ecstatic! Within 24 hours she was helicoptered back to Washington Regional in Fayetteville, AR. The change was all so bittersweet. It was great to be back in NWA, of course. We were in familiar territory, Ryan wouldn’t have to commute and I would have more care options for Evan. Being at Children’s our only daily responsibility was Corinne, but now, back home, routine responsibility became a reality. I was feeling a lot of anxiety being home and was having a hard time adjusting to the change. Then, there was the difference of being at a children’s hospital where sick children seemed “normal;” little ones walking the halls pulling their IV’s behind them, the constant beep of machines and the rush of doctors and nurses feet seemed normal. Now at Washington Regional, Corinne was the only NICU patient and needed full time care so her bed was set up in the regular nursery area, next to the healthy babies that would soon be going home. Taking our baby home would not be in the future for us and that’s when it hit me… this was not “normal!” My child was dying and there was nothing that could be done! I remember running out of the hospital, crying hysterically, calling my sister on the phone. She was a doctor and mother who had guided us through so many hard days and decisions. I was questioning everything we had done up to this point. Did we do enough? Were we making the right decisions? Why was this happening to us? Then, one of the hardest, most painful realizations I’ve ever had... How do I plan a funeral for my daughter? After a week back in NWA and a meeting with Corinne’s neonatologist, we learned that there was nothing more that could be done for her. She was, at this point, the most stable she had been since she was born. If Corinne was ever going to successfully breathe off of a ventilator, now was her chance, plus there were risks, like pneumonia, the longer she stayed ventilated. So, we made the decision to take her off the ventilator, her life support. We asked the doctors how long they thought we would have with her, they thought a couple of hours but there were concerns it would be just minutes. Before we took her off the ventilator, we called our families and welcomed our friends to the hospital to meet Corinne for the first time. Five days later, we made the hardest walk up to the hospital yet. The doctors were all very patient as we loved on Corinne and said our goodbyes. Then it happened, we turned off all of the machines and took out her ventilator and for us a miracle happened, our daughter kept breathing on her own! Corinne lived for 59 hours after her ventilator was removed. We were able to really hold her for the first time. It was all so bittersweet. During those next two and a half days, I was constantly watching her breathing, counting her heartbeats and respiratory rate, and always holding my breath for the decline. Since we didn’t know how long we had with Corinne, for the first 24 hours it was just Ryan and I with her. On the second day, family and close friends came up to see her. Then, I experienced the worst thing any mother should have to, after 29 days of life, I watched my daughter take her last breathes. Zellweger Syndrome is a recessive genetic disorder that affects normal metabolic function, along with organ and brain development. It is extremely rare, and the mass population has a .007% of having a child born with ZS. Since my husband and I both carry the recessive gene, we have a 1 in 4 chance of having a child born with ZS. We are thankful every day that Evan is healthy and was not affected. Many people ask why we didn’t know about this when I was pregnant, and if there was anything they could have done. The answer, unfortunately, is no. The disorder is so rare there was no reason for us to think we were carriers. I am so thankful for all the medical care that I had during my pregnancy and after Corinne was born. I have no doubt in my mind that Corinne had the best life possible. The doctors at Mercy, Arkansas Children’s, and Washington Regional truly are amazing! I would list the names of all the amazing people in the medical community we met along the way, but it would fill up an entire article in itself. Corinne offered me one of the greatest loves of my life and the greatest heartbreak. She was born into my arms and died in them. Losing a child, I think, is the greatest loss a person can experience. I know a lot of people that experience tragedy say that they don’t want those things to define them, and I understand that. The loss of my daughter will define so many things in my life that it almost does define me and I am more than okay with that. I know that Corinne is in an amazing place, feeling the love of our heavenly Father, but the ache I feel for her is almost a physical pain. I try to cherish every moment I have here on earth, but I lull myself to sleep at night with thoughts of my family reunited in heaven. When that day comes, she will be so happy to meet her new baby sister. That’s right, we are also happy to announce we welcomed our third child, Harper Jane Moll, into the world on February 5, 2013! That is another amazing medical journey we have been on... but I will leave that for another story.

I miss her

Having an emotional night tonight. I miss her so much!! It truly hurts! I miss all the wonderful memories and love we were suppose to share.
80% of Corinne's life she was non responsive. I would just sit there for hours at her bed side rubbig and studying her body so I would never forget it.
I would trace her hair line along her ear. I would do the same thing with Evan when he was a baby and I nursed him.
She loved to be on her belly, since she had no movement we would have to reposition her every few hours to prevent bed sores, her belly was her favorite and she always seemed so peaceful in that position.
I was in love with her perfect little lips and could not wait until the day all of the ventilator and oxygen lines were gone and could see them in all thier perfection and kiss them over and over again. (and believe me when the time came I did!)
I miss her bright eyes, even though it was a special treat when we saw them. And when I did I know she saw me too. At times I thought she may have Evan's eyes.
I miss her "cry face", Corinne only cried a few times her first few days of life and oh how I loved that sound. After that it was just a face she made with no sound.
She had the most beautiful soft skin, which I always found strange since her body was failing her in so many ways and she was always being poked and prodded.
She had my fingers and my sisters toes.
She had a little birth mark on her thigh that kind of looked like a bunny (whenever I visit Corinne'S marker there is always a bunny there that runs back into his tree when he sees me).
I miss her smell! I slept with her things for months not wanting to wash them. I sadly realized her smell is hospital soap and plastic tubes and equipment. I know it sounds weird I would even smell her equipment I got to keep afterwards in hopes of brining back more memories or fear of forgetting the smell.
However bitter sweet our time was with her, I miss every minute of it! I truly felt like I did get to know her. I didn't get to hold her a lot, cuddle with her ,feed her, or shower her with thousand of kisses I would of liked. But she was a fighter, silent in her pain, and hopefully feeling the peace from all the love of her friends, family, and heavenly father around her.
I feel so blessed to believe in our wonderful God and to know that Corinne is in the most amazing place in the world shining down on us!

Birthmark on right thigh.. I know its hard to see

"my Hand"

"my sisters feet"

Her beautiful skin

Look at those beautiful eyes and bottom lip you just want to kiss!

Her "cry face"

Her favorite position

Corinne Sophia Moll perfect in her God given way.. go where we can SHINE baby girl!!

I Remember

Over the last few weeks I have wanted to share stories that have crossed my mind about my pregnancy, life with Corinne and life after Corinne.....

-I remember being 6 months pregnant driving to Branson with a girlfriend, we were talking about her mom who was battling cancer. My friend was devastated; her mom was still in her 50's with so much more life to live.
I just remember saying to her that at 30 I didn't feel like I had anything tragic happen in my life- no loss of a loved one, no horrible accident, no hurdle to overcome. I said I feel like all people have the one dramatic event happen in their life. Maybe life changing for some. It was weird in some ways I even looked for this one event; to mold my life, change its path in some way, wake me up to this world and make me appreciate what I did have.
I didn't want my daughter’s death to be this one event for me. In some ways I still can't believe this all happened.

-The first few days of Corinne's life were an emotional roller coaster! Less than a day after Corinne was born my sister Rachel was calling to tell me she was getting a red eye from California into Little Rock. I remember thinking (I might have even said it??..) "No Rach don't do that it’s so expensive, Corinne and I could be home in a few days.." I am so glad my sister came! I couldn't have imagined those first few days without my sisters there. Thanks Rach for having the Mommy/Sister intuition to be there for us!!


-The weeks after Corinne passed I had the worst anxiety of my life! I was literally telling my sister to shot me with a tranquilizer gun. (The funny thing is she kind of took me seriously.. I think it was the doctor in her.. I guess people (celebrities??) actually do take tranquilizers recreationally).. Anyhow walking relieved this for me. I literally would walk in the morning with one friend and then walk in the evening with another.
I liked to walk at Corinne's cemetery with my friend Ronda. Ronda finds cemeteries soothing too. I remember when I was a teenager I use to drive through this cemetery down the street from our house because I thought it was so beautiful.. Any how I am loosing track.. So I liked to walk at Corinne's cemetery. One day Ronda and I were walking and "tombstone shopping" for ideas for Corinne's marker and we wandered through what I like to call the "high roller" area, with these massive monuments with stories of lost loved ones engraved on them. (So let me set up the cemetery, along the perimeters are a couple of subdivisions and many of their back yards butt up against the cemetery. So you commonly see families walking their dogs, kids on bikes, and groups of women taking walks through the cemetery). So this man saw Ronda and me reading markers, which then turned to us googling stories to find out how this young mother or entire family lost their life. This man started telling us stories of the people who had lost their lives and were buried there. Half way through our conversation he asked us if we were new to one of the surrounding subdivisions. I cleared my throat and told him "no, actually my daughter passed away a few weeks ago and is buried here" He immediately apologized and told us he hoped he wasn't being insensitive with his pervious stories. I in turned told him a definitive "NO, I love the thought that there is someone here that cares to know about the loss of peoples loved ones and that it brings me much peace and happiness to know that my daughters story and life might be shared with someone walking through this cemetery one day!"

What I Need

(a friend shared this with me tonight from another women's blog that lost a child, loved it and thought I would repost,it was like she spoke the words and feelings right out of my mouth!)

WHAT I NEED

I need to say her name without bringing everyone to tears.
I need her life to be included in the count of children, grandchildren, nieces and nephews.
I need kindness on birthdays and understanding on holidays.
I need to stay in bed and a reason to get out of it.
I need to talk endlessly and to let the phone ring.
I need an extra hug and respect for my space.
I need someone to ask how I’m doing and want to know the real answer.
I need careful announcements of pregnancies, baby showers and births, mine did not turn out as I hoped.
I need a “handle with care” sticker for my heart, my emotions have been fragile since the day I said goodbye.
I need patience and reminders for my mind, part of it will always be somewhere else.
I need forgiveness for not being the friend, sister, daughter and wife I used to be.
But more than anything I need you…
your support, your friendship, your understanding…
a lifetime is an impossibly long time to wait to hold my child again.

Focusing on the Positive

So I know in my earlier February post I kind of went to "negative town" about how some of our friends and family haven't supported us, and although that is how I have felt at times, there has also been 100 times the amount of friends, family, acquaintances, co-workers, church community, doctors, nurses, and strangers reach out to us!!!
I feel by posting that I made all those wonderful people feel like they haven't been there for us. So this post is to let all those people know that the cards, emails, donations, food in our frig, commemorative jewelry, ornaments, flowers, balloons, tree’s (yes someone sent us a tree to plant in Corinne's memory!),keepsakes, books, financial support, people who traveled to support us during Corinne's life and after her death, gift cards, gifts for Evan, personal stories of their loss, and most importantly the simple texts and Facebook posts have made this whole process more bearable! It has made Corinne the blessing that she was to me and all of us. It’s made me realize how your friends and family do rally around you in crisis and that kindness and selflessness does still exist in this worldly life we live. So thank you!
I know that I haven't always given the proper thanks to everyone but those will always be part of the memories I have of Corinne and they will never be forgotten!!
-

Arkansas Children's Hospital

Each year the Arkansas Children's Hospital Foundation honors and recognizes its most generous donators. Because of the all amazing financial support all of our friends and family showed to ACH in Corinne's memory we made a big impact because Corinne's name has made it on the "Donor Wall of Honor" in the main lobby and the "Tribute Wall".... to quote the letter... " The fund in tribute of Corinne Sophia Moll provided significant financial support for ACH in 2011 and qualifies to be listed on the tribute wall"

This makes me so proud! And thankful!

I hope to keep this momentum going. I think there is an annual amount that can be donated in honor of a patient to keep them on the Donor Wall. It would make me so happy to know Corinne's name could mark the walls of Arkansas Children's hospital for years to come. So I hope to have fundraisers in the future for proceeds to go to ACH. So with that said if anyone is up to make donations in Corinne's memory we would be so appreciative! Every dollar counts!, there are no small contributions :)

https://giving.archildrens.org/sslpage.aspx?pid=402

The care we got at ACH was amazing and never once made me doubt we were getting the best care for Corinne possible. The NICU staff of doctors and nurses were amazing! Though the doctors personal skills may be lacking at times their medical brilliance was not, there are some pretty amazing doctors that work there and are making huge impacts in the lives of so many families. My sisters both work in the medical community and I always had a respect for them, but after going through 29days of hospital care I truly realized the impact the medical community makes on the lives of so many. It brings a whole new level or respect to me for the medical community thats for sure!!

Ryan and I have not made it back to ACH but hope to soon to see Corinne's name on the wall!!

Angel One Helicopter team arrives at Mercy to take Corinne to ACH (July 12th)

Life Without Corinne

I don't even know where to start. I want to be able to say positive things, but all I feel is hurt, disappointment, hopeless, and a physical pain that is indescribable. Someone told me 4 months is the hardest. I still feel like I am in that stage. I feel so empty without her here. I went back to work after being gone for 3 years, being a stay at home mom was my dream, but I ended up just walking around an empty house numb to what was missing. My daughter. I wouldn't say going back to work is "working for me" but I am trying to tell myself I need to do what’s best for me and my family right now.
Most days I wish I was with Corinne. I don't think of suicide I just think of the "what ifs"... What if that car came across the intersection and hit me, what if I was diagnosed with a cancer and only had x amount of time to live. I see no silver lining. I know God is with me but I feel alone and abandoned right now. Most people in my life don't know how to relate to me, most don't even reach out to me anymore. I know it’s not all them, I am different. It hurt when I returned to work and very few people said anything about Corinne. I know they know. But it’s awkward, so instead of making themselves feel uncomfortable to maybe make someone feel comfort they don't say anything at all. Unfortunately that’s the society we live in. I want to write a book or something and title it "My daughter Died And This Is The Shit I Should of Said" I feel like I have had to skirt around the death of my daughter to make everyone else more comfortable. Out of the 4 women that threw Corinne's baby shower for me 3 didn't attend Corinne's service (ones mother was dying of cancer and has been there for me more than imaginable so no hurt feelings there). The other two I really don't know why. I had what I thought was an extremely close friend just move out of town during this time in my life and I had to read about it on facebook. she has sent one text message since then. Please understand I am not saying these things to say these are bad people, but obviously the bustle of their lives have made them a little oblivious to the world around them
I hurt for my husband and how his friends and family have let him down. So many of his guy friends haven't even said an "I am sorry" “do you need to talk".. Nothing. I mean NOTHING! His own brother made Corinne's life and death about what was more convenient for his family. I know Ryan may not be a very good communicator but when your siblings daughter is dying you are there, no questions asked. During this process we always said that this would forever change our relationships with people. My sisters who I wasn't very close with growing up but have become closer with as we have started families over the last 4 years would of and did everything they could to help me through this process and our relationships will always be stronger because of it. My father who has always tried to be the best father; but a divorce and a rebellious daughter wasn't always conducive to that was here for me unconditionally. I will always have a greater respect and love for him because of that. And then there is my mother who on several occasions has said that the most impactful part of 2011 has been "her husband’s trip to Africa", "her work with a missionary", and "her husband’s car accident (which it was a miracle he survived)" But the fact that her daughter lost a child didn't make that list or even that she lost a grandchild didn't seem to really affect her either. Ryan's parents have been a great support, from the beginning they were here and said that they would be here for a week or a year whatever we needed.
We had friends putting money in our mailbox, food in our frig, mowing our grass, doing anything they could to help. Their support was amazing and as overwhelming as it was during the time their support helped me through this process.
I cry every day for Corinne.. Mostly in the car, lying next to Evan in bed while he sleeps, and on my knees in my bedroom praying to God for comfort.
I know I shouldn't post this because of all the people that I will offend. I wish I didn't care. Maybe one day I won't.. they didn't really seem to care too much for us.

Corinne would have been 7 months. Maybe crawling, eating table food, giggling at her big brother, putting everything in her mouth then dropping it and then me sanitizing it and the process would start over again, getting her first cold, getting into everything. We will never know. A part of my heart will never be the same.

This process has made me realize how precious life is and what’s truly important (family, friendship, life, unconditional support) and then it’s made me a cynic. (A celebrity death or failed marriage, who cares) No one seems to care that my daughter died. That thousands of children die a day, live in poverty, at the age of 8 know more about death and survival then most kids will in a life time, but because a celebrity that abused drugs more than half of her life and will forever change her daughter’s life because of it will be the "talk of the town" for the next two months. Or let’s not forget the celebrity that was accused of molestation but will go down in history as an icon. It scares me when people get more wrapped up in the life of a celebrity but have no compassion or support for their friend or someone in their own community.

I struggle with how to answer the question "how many kids do you have". I have reached out to mothers that have lost children and most of them say the accurate amount (not minus the one who is in Heaven) I asked one friend her opinion and her response to me was "well Emily you do only have one child" I always say 2 and then when they ask the follow up questions I either say the truth or skirt around it and say I have a daughter but focus more on Evan. I did this because I got so tired of the crickets that follow after I would say "my daughter died last year of a genetic disorder" I am not looking for this big emotional outburst from the person just a simple "I am sorry for your loss" the most comforting response I had from a new coworker that knew nothing of my story was "thank you for sharing that with me".

What would of been...6 months old

Corinne would of been 6 months old last week. Some times I still feel like I need to be pinched and awaken in hopes this is all a dream. Looking back at pics tonight of what Evan looked like at 6 month. 4-6 months (and 3yrs) have been my favorite period of time with him. My heart is breaking for that missed opportunity with Corinne. I know she is in good company right now though. Love you baby girls!!

That morning Evan got dedicated at church (Fellowship)he was 6mos old

Vacationing with the Moll's 6 mos old

bath time 6 mos old

Corinne's Grave Marker and 6 month birthday

Corinne's marker came in last week, on January 10th, her 5 month heavenly birthday. Ryan and I were very excited to see it. It was pouring down rain that day so we weren't able to get a very good look because the stone gets darker when its wet. When we were pulling into the cemetery " I Will Rise" came on the radio, the song was played at her funeral service. Evan and I went back today to see it. Below are some pictures

On Januaray 12th we would of celebrated Corinne's 6 month birthday. I really don't have words to describe the day....

Evan and Corinne

Front

Back

Pictures Taken During Funeral Service

Free photo slideshow created with Smilebox

Mika Beth Slideshow

Create a free slideshow

What is Zellweger Syndrome...

What is Zellweger Syndrome (ZS) and what it means for our family....Ok people put on your thinking caps and try to follow along..:)

Zellweger syndrome is the severe form of a peroxisome biogenesis disorder(there are two other disorders that fall under peroxisome biogenesis disorder, Zellweger being the most severe) Peroxisome biogenesis disorders are a group of conditions in which the process of making peroxisomes (specialized structures in the cell responsible for a variety of metabolic processes) does not work properly. The signs and symptoms of Zellweger syndrome typically appear during the newborn period and include poor muscle tone (hypotonia), poor feeding, seizures, cysts in the liver, affected liver functioning, and characteristic facial features. The prognosis for Zellweger syndrome is usually poor, with most children passing during the first year of life.

Peroxisomes are cell structures that break down toxic substances and synthesize lipids (fatty acids. oils, and waxes) that are necessary for cell function. Peroxisomes are required for normal brain development and function and the formation of myelin, the whitish substance that coats nerve fibers. Babies born with ZS do not have proper functioning peroxisomes and aren't able to break down fatty acids.

So I had a very hard time understanding what ZS was, it wasn't until after Corinne's passing I fully understood it. The diease is very rare, only 2-3 doctors/nurses that met Corinne had ever had a patient with ZS... Maybe the above paragraph made since to everyone else but it took me weeks to fully understand it.. So here is my layman's terms..


ZS is a disorder that effects peroxisomes in our body, that we must have for normal cell function and development (everything in our body is made of a cell).. i.e. most ZS babies do not have fully developed brains and do not have healthy functioning organs. Most of them have liver failure (which Corinne did not have) and mild heart issues(which Corinne had severe heart conditions). Most babies to not have a suck reflex so they are not able to bottle feed and have feeding tubes. Because of these peroxisome disorder their muscles do not form like they should and they have limp limbs (hypotonia). Most ZS babies have daily seizures with increase and severity in their final weeks/days of life. Corinne only had a few the first few weeks of life but had 20-30 a day in her last week. Most babies are not able to breath without assistance whether it is a nasal tube that provides a flow of oxygen or are put a ventilator that does all the breathing for them (Corinne was put on a vent at 10 days old) Most children pass from respiratory distress because they become to weak to breath on their own and their brain simply forgets to tell them to breath. Corinne's vent kept her alive those last 19 days of life, it was her life support.

Zellweger's is a genetic recessive disorder- meaning Ryan and I both carried the recessive gene and passed them both onto Corinne making it a dominate gene in her. We have a 1 in 4 chance of having a child with Zellweger's and our children born without Zellweger's (Evan) have a 66% chance of carrying the gene as well (ie.. Evan could have a child with Zellweger's).

What this means for Ryan, I, and our future children.. Ryan and I will not be able to have children naturally. IVF (in vetro vertilization) will be extremely expensive (way beyond the usual price tag of around $12,000 a round)because we will also need to have pre genetic testing/diagnosis (PGD) done on our embryos to "weed" out those that have ZS. The first baby born without ZS using IVF and PGD was in 2007. Our other options is to use a egg or sperm donor so biologically one of us would not be the babies genetic parent. Adoption is and has always been high on our list, but again very expensive and so emotionally taxing.

The grief we have from loosing Corinne far out ways the grief we have for not being able to have our own biological children the natural way but it does add a new loss to our life. I know people have a hard time understanding that. IVF and adoption are so common now a days that people just think " oh they can have another baby, thats easy" but its not. My heart feels for all families out there that have gone thru the IVF and adoption process they know its not "easy".

Many people ask why we didn't know Corinne had ZS while I was pregnant or is their any testing they could of done to find out. Basically the answer is NO.. If we knew that Ryan and I carried this gene they could of done an amnio around 20 weeks to determine if Corinne had it but ZS is rare and there were no reasons for us to think that we had it. Regular amnio test are done for very common genetic or trisomy disorders. But even if we did know there would of been nothing they could do for her, we would of just of had the added heartbreak of carrying a unborn baby knowing she would not live.



Here are some facts on ZS
-There is a less then 1% (.65%) chance you carry the Zellweger gene

-There is a .0078% chance you meet someone that carries the gene and have children

-80 babies a year die from Zellwegner's in the US; 2,6000 in the world; that equals 1 in 50,000 babies are born a year with ZS.

-if two parents have the recessive ZS gene (as Ryan and I do) they have a -25% chance of having a child born with the dominant gene ( ie a child born with ZS)- they have a 25% chance of not passing the recessive ZS gene on at all- and a 50% chance just one parent passes the recessive gene onto their child ( ie child does not have the dominant ZS gene but the recessive and could continue to pass it on to future generations)

Again I am touched

The below blog is written by a women, Leah Martin, who worked at and some times lead Evan's Gymboree class while I was pregnant with Corinne. She was also pregnant right before I was with her daughter being a few months older then Corinne. She wrote this blog back in August about our sweet Corinne. And tonight she felt the urge to share it with me.. It couldn't have come at a better time and as we are mourning Corinne's 5 month birthday.


WEDNESDAY, AUGUST 17, 2011

Blessed.
When I was in the 4th grade my friend Brandy had a baby sister who died from complications of a hole in her heart. I remember when it happened because we were actually at a Jump Rope for Heart rally at my school {you remember those, right? You raised money and got super cool prizes crap based on how much money you raised?!} and Brandy was jumping rope in the same area of the gym I was. I don't remember all the details, but I do remember Brandy telling me her mom was holding her baby sister when she died. Being around 9 at the time I had no concept of what that meant, but as I sit here 17 years later with tears streaming down my face my heart aches for Brandy's mom as I can only imagine her pain is still as real today as it was back then.

I moved a year or so later and have no idea what Brandy is up to these days. I honestly cannot even remember her last name, but was reminded of her and her sweet baby sister this past Saturday as the Moll family {a family I know through Gymboree} said goodbye to their daughter Corinne. She went to be with Jesus on August 10 - just 2 days before she would have been a month old. My heart aches for Emily as much as it does for Brandy's mom.

As I tucked Campbell in Saturday night I sobbed as I prayed for Emily. I prayed for God to give her a peace only He can provide. I prayed that her soul would rest in the fact that He is good and would carry her through this. I also thanked God for my healthy, happy 10 month old baby girl. It was at that moment I realized that she is not mine, but precious a gift God has entrusted to me. One He can take back at any time. I knew I was blessed, or at least I thought I knew, but in the stillness of that night I felt the presence of the Lord like I haven't felt in a long time. I had gotten to a place where I felt like Campbell was more of a burden than a blessing. Do not misunderstand what I am saying there. I am head over heals in love with my daughter, but I am sinful and selfish and if her schedule and/or needs did not fit into the perfect mold I had created I would often feel put out. I am not proud to say I felt that way, but am being honest to show that God is so much bigger than my weakness. It is a learning process and takes me surrendering daily, sometimes hourly, but the Lord is completely changing my heart. That moment completely shifted my focus and I believe I will be a better mother for it.

I have no idea why God chose to take Corinne so soon, but her short little life significantly changed mine. Join me in praying for the Moll family as they figure out life without their sweet girl.
To read here blog go to http://ohthemartins.blogspot.com/2011/08/blessed.html

Corinne in my belly

I know these pictures are probably a little personal, but hey they are all I got:) These are the pictures we took while I was pregnant with Corinne!!

6 weeks pregnant

11 weeks

16 weeks

21 weeks

24 weeks.. man I wore a lot of elastic waste band pants!

28 weeks

still 28 weeks :)

31 weeks

35 weeks

38 weeks

Ok folks I am putting it out there.. no that is not a beached whale but me 38 weeks pregnant trying to find some relief from the heat in Evan's swimming pool :)

38 weeks

39weeks.. Corinne was born less then 7 hours after this picture was taken

Corinne's 5 month birthday- Evan missing his little sis

Corinne would of been 5 months old today. Its all so bitter sweet. Mostly feeling the bitter right now. We miss her so much!!! What has really been breaking my heart lately is how Evan thinks and talks of Corinne often. I some times forget that he lost out on having a little sister too.

Today Evan asked me if we could get Corinne a Christmas present and take it to her in Heaven! Such a sweet considerate boy. Now his first suggestion on gifts were drums (which is the top thing he ask Santa for, so there does seem to be some self motivation there :)

A few times he has asked me if when Corinne comes home from Heaven and gets all better can he help feed her and play with her like his friend Harrison gets to do with his sister Elliott. I told him that one day we will get to visit Corinne in Heaven but she wont be able to come home, his response was well Heaven is far away but so is Tennessee and Grandpa Bob and Grandma Cheryl get to visit our house.

Most of the time Evan seems to get "it", but it has offered a new level of heartbreak lately when I notice him missing doing the things he thought a big brother would get to do.

Arkansas Children's Hospital had a memorial service for the children that lost their lives this year. We were not able to attend but they sent us the program and an ornament with Corinne's name on it. It broke my heart when I read the program and there were over 60 children listed just in the months of August-October who passed away. One of the names I think I recognized was of the baby boy that was next to Corinne during her time there in the NICU. I didn't realize he was terminal :( He was so adorable I always wanted to go over and kiss his chubby little cheeks.

Happy 5 month birthday baby girl, we love you and miss you soooo much!!

Corinne getting to wear her first outfit!! Her little sister onsie! It was one of the two outfits we had packed when we left to have Corinne in the hosptial

Our Family, December 2011 sitting in front of our angel christmas tree

Evan visits with Corinne- video

Corinne visits w/Mommy and Ronda Part 2

Most of Corinne's life was spent sleeping with very few seconds of awakeness or movement. These few minutes captured the most alert moment Corinne had had up to this point in her life. She was 2.5 weeks old. This was the first time she truly responded to my voice and moved multiple limbs at at a time. There is even one point you can see her trying to follow my voice ( not sure if its this portion or the video before)

Corinne visits w/Mommy and Ronda

SMS Shine - David Crowder Band

You Are My SunSHINE

my sunSHINE

Tonight has been a hard night for me. I knew it was going to be, but thought overall I would handle it better...not here writing this. A good friend of mine Sarah lost her mom (Susan Richard) to cancer on Friday. Susan had been fighting this aggressive cancer for almost a year with her friends, family, and always her daughter Sarah by her side. Her veiwing awas tonight and her funeral service tomorrow. There was a lot of talk about how amazing Susan was as a mother and grandmother and it made me reflect on my relationship with Corinne even though it was rather short.
I know its in Gods hands, he is in control, but I also know we have free will. I look back and wondered did I try/fight hard enough for Corinne? I am a realist and when I saw her medical charts I knew realistcially we were not looking at a good outcome. I wish I woulld of hoped for more!, prayed for more!, begged for more!! The idea of Corinne being non responsive in a wheel chair was really hard for me to wrap my mind around. Now I would do anything to have her in that capacity. Just to have her I would do anything! Whether it be 2 weeks, 2 months, 2 years, or a life time. I would do anything to have her here on earth with me. I know this was God's plan but was it because he saw that I was too weak to care for a child with special needs? As I always say "God only gives us as much as we could handle" I have always thought of my self as a strong women who knows how to keep her head up, back lash when needed, and zip it lock it when it most counts. I always said I could handle a child with special needs, but did God not see that in me? I don't blame him or struggle with our relationship at all. I become closer with him every day. I struggle with who I am and I how must continue on with my life. Because I think I will continue to break if I walk into another room and I am just known "as the women who lost her baby" or "I am the person no one cares to ask how we are doing because they are busy in their lives", or the most hurtful "don't say anything at all..because maybe they have forgotten about it". I know Corinne is in the most amazing place in the world and I look forward to the day I get to be with her again. But as a human I can't but help but miss not having her with me, grieving it daily on one level or another.

( I just studied James in my bible study group you would think I would of learned something, but I am just trying to speak my feelings not hurt anyone else's)Im sorry if this is too much for people as always I hesitate what to say so there is no judging or misunderstanding of my thoughts.
But I lost my baby tragically and it devastates me almost daily

I said I wasn't one of those mothers that curled up in a ball when my child died, but I am one of those mothers that cant fake it threw another day of people wanting to pretend Corinne wasn't born so they feel more comfortable. She was our daughter that I carried for 9 months, planned a future with but was only given 29 days full of hospitals, more then 50 doctors and nurses, wires, machines, leads, needles, test results. Corinne was never even a baby but a report. A thick 3 inch medical report that lays in her crib that I read every so often...

I love you Corinne Sophia Moll- My SunSHINE!

How am I?...

"How are you?" is a daily questions I get from friends and family, well it use to be. Its been 4 months most people don't ask anymore.... I use tom come up with a new phrase to sooth them. I struggle with what to say. I am a honest person but I am too sensitive to poeple's opinions at times.. Most days I wake up searching for something that will motivate me to be a happy mother, wife, and person. Most days I fail. And stay like a hermit in my house walking the rooms oblivious as to what is missing. Other days I put my act together and head out and pretend like nothing happened and keep living life. I think I pull those days off relatively well, but who knows.
I didn't know pain existed like this. I physically hurt for Corinne everyday. It however does bring me peace knowing she is in Heaven, the most amazing place ever and I long for the day we can be together!

I know people that lost their children too soon and they say it "was a blessing" and Corinne did bless me, but its very hard to feel blessed when you lost your child. For me Corinne did not have a huge legacy to leave behind.. no cancer awareness, no ad for drunk driving, no genetic disorder that could have game changing medical resources available to them one day. Zellweger will never be cured and mostly will continue to never be heard of. I am okay with that. I don't feel like I was blessed with Corinne to rid the world or educate them on ZS. But I do still search as to what this means for me as a women and mother. Because right now I feel empty and alone.

Wrapping up 2011

The Moll Family 2011
In November of 2010 we found out we were pregnant with our second child! In February of 2011 right before my sisters, Sarah and Rachel, visited Arkansas for one of our annual gatherings I found out it was a girl! I specifically asked the doctor if I could have my ultra sound before their visit so we could enjoy some shopping—anyone who knows us knows the Wegner girls shop when they are together!

In May Ryan, Evan, and I did a 10 day road trip to visit our family and have our last hoorah before our lives would be taken over with sleep deprivation, naps, feedings, and road trips that consisted of screaming children. We stopped outside of St Louis for Ryan’s cousins wedding where we got to see Ryan’s parents, Aunt, Uncle, and cousins. We then headed to Lake Cumberland, Kentucky to visit with my sister Sarah, husband Jason, daughter Elise, and her in-laws on their houseboat. It was suppose to be 5 days of fun in the sun and water, but instead it ended up 5 days in the rain and kiddy pool up top ( this was during the same time the Joplin Tornado hit and so many lives were devastated). As always we made the best of it and enjoyed our time together. After that we headed to Memphis to visit one of Ryan’s best friends and his brother Jerrod and his daughter Meredith for a trip to the zoo and a baseball game. The trip overall was a huge success. Evan did great in the car! I was 7 months pregnant and I did pretty well myself!

On July 12, 2011 at 1:27pm our beautiful blessing of a daughter was born. I had an amazing pregnancy and delivery with no concerns and great medical care. The minute Corinne Sophia Moll was born she was not breathing and her heart was not beating. After several hours in the NICU she was helicoptered 3 hours away to Arkansas Children’s Hospital. After 2 weeks of testing Corinne was diagnosed with Zellwegers syndrome. Zellwegers is a recessive genetic disorder that damages the white matter of the brain and also affects how the body metabolizes particular substances in the blood and organ tissues. Due to these things Corinne had severe brain damage, 2 holes in heart causing excessive heart failure, and her other organs could start failing her at any moment. Zellwegers has an average life expectancy of 6 months but due to Corinne’s severe heart failure and poor brain development our time with her would be much less.

In early August Corinne was back transported to a local hospital (Washington Regional) so she could meet her friends, family and spend some quality time with her big brother Evan. On August 10, 2011 after Corinne’s 29 days to struggle for life Corinne died in our arms.

Corinne has given us the biggest heart break of our lives and been the best blessing. Bitter sweet I know…

In September Evan and I went to Tahoe for a vacation with my sisters and their families. The trip was difficult for me being away from things that reminded me of Corinne, but Tahoe is breathtaking and it was nice to be with family. It also marked the first visit where all the cousins successfully got along! No biting, no hitting, no wrestling moves (Jack), and overall good sharing skills :)

The end of our year has been difficult on so many levels, but our time with Evan becomes more amazing and precious. Evan turned 3 on November 16th and we celebrated with a birthday party to Build-a-Bear! In November Evan also started soccer!

Every day Evan amazes us with his words and actions. Here a few of our favorites..

1-Mommy “Evan Thanksgiving is a time where we say what we are thankful for, what are you thankful for?”
Evan- “My Mommy and Daddy”

2- Mommy sarcastically asks “Evan what planet are you from?”
Evan- “Earth”

3- Mommy “Evan where is Corinne?”
Evan- “Heaven and I will get to go there one day because I told Jesus I love him”

4- Katie (family friend) asks Evan during a middle of a tantrum “Evan what do you want for your birthday?”
Evan instantly dries up the tears and says “a John Deere, a football helmet… (then looks around the room and points to their TV and says..) and that TV.”

Another huge part of our year has been the amazing outreach from our family, friends, and new friends we have meet along the way. Thank you for all of your love and support.

Lastly we have some friends that have dealt with tragedy this year too.

The Woodruff family reached out to me when Corinne was at Children’s. They lost their son Miller in June 2011 to Spinal Muscular Atrophy; he was almost 3 months old. Please check out www.imwithmiller.com to learn more about their story and support their amazing cause.

Another family who has touched our lives is the Tucker’s. They are friends we have had for years and have been a huge support during this time in our lives. This year has been a difficult year for them as well. Jeff lost his stepmother in November 2010 to cancer and his stepfather has recently been diagnosed with throat cancer. Sarah’s mom was also diagnosed with an aggressive Cancer in January of 2011. In support of their family they have started a team to raise money for the American Cancer Society. To learn more please check out their link. www.relayforlife.org/bentoncounty Team Name- Fighting Like Hogs

2011 started off on a higher note and ended on a lower one, but we our thankful for what we do have and thank God every day for the blessings he has given us. Its gives me much peace to know Corinne is in Heaven and there will be a day we are all together!

The Moll Family
Ryan, Emily, Evan, & Corinne

To read more about Corinne’s life please check out her blog at
www.corinnesophia.blogspot.com

Remembering Corinne

The last few days have been bitter sweet.

November 9th marked the day that we found out we were pregnant with Corinne the year before.

November 10th was Corinne's 3 month heavenly birthday.

November 12th Corinne would of been 4 months old.

and the sweet part....

November 16th Evan turned 3!!!

Here are a few pictures to remember Corinne and celebrate Evan!!

Evan's 3rd birthday Party

Evan and Ryan July 4,2011

Evan August 2010

Evan Turns 1 November 16,2009

Evan 8 months old

3 months old- first snow storm!

Evan is her! November 16th, 2008

One week before Corinne was born

Standing outside the hospital getting ready to go have Corinne!

Corinne is here July 12, 2011 7lbs 6oz 20inches long

Corinne 6 days old

My little Buddha Baby

Bright eyed and beautiful

Our last moments with Corinne