Wednesday, September 25, 2013

Enjoy the Ride, A song by Monica

The following was written by a brave and beautiful mama named Monica. 

Her precious little baby boy, Acacius, was born still after going peacefully to heaven at 20 weeks gestation in November 2011.  

She is currently carrying her rainbow, who sadly has been diagnosis with a fatal condition. She lovingly chose to carry this darling little one for as long as she can and spends her time pouring love into her little "Beanie's" life.

She writes: "I've been composing a song the past few days, dedicating to my beloved unborn baby "Beanie" and all you courageous mamas who've decided to carry to full term after a fatal diagnosis".

Song Title: Enjoy the Ride

I can't see you yet
I can't hold you yet
I can't kiss you yet
I can't clothe you yet
But you're living inside of me
Breathing through me
Every inhale and exhale
Shows how much I love you

I may never be able to parent you
The way I want to
No matter how I yearn to
But I'm providing you nutrients
Singing to you
How I love talking to you
Create the bond no one can break through

I have decided
To enjoy the ride and give you
Nothing but the best
Pour out all my joy and love to you
I have decided
To carry you in my womb
'Til your last breath
'Til your very heart stop beating
Then I'll use my whole lifetime
To carry you in my heart

I will enjoy the ride
Look beyond the empty cradle
And shattered dreams
Sweetly embrace our lives together
I will enjoy the ride
Look beyond your short lived moments
Create memories that will last a lifetime
Praying for a miracle
But if God needs to take you home
Though my heart will break
With comfort I know
We enjoy the ride

Thursday, September 19, 2013

A place I consider beautiful, a guest post by Conor

Post by Conor (Muirann's brother)

Muireann was carried to term with a diagnosis of Trisomy 13. She was born on the 15th of April 2012 stayed six amazing weeks. She is greatly missed by all who loved her. Learn more at Muireann's Travels

A place I consider beautiful
Written by Conor (16yrs)

A place I consider beautiful may seem strange but to me it is the most beautiful place in the world. It is the place where my sister sleeps in a covered wooden bed with her favourite toys and a picture of my family, her blanket, earth and her precious flowers. It is her grave.

Looking back I remember the day we brought her to her final resting place. It was a warm day, not a cloud in the sky, birds sang and butterflies flew. My family all came to my house, where my sister was being mourned. They said such things as "she was so young" and "she's in a better place now" when I heard people saying this it filled me up with anger. The thoughts going through my head were "yes she was so young, too young, no one deserves to did after only six weeks on this earth, and a better place, surely there was no better place for her than here with her family. I spoke to no one for the whole day, during the funeral I had no tears left to cry and as we lowered her down that hole I turned and saw my dad, the proud strong man that I have known , reduced to nothing but sorrow. But now we are all back to our lives but that day will be in my thoughts forever.

A couple of weeks after the burial my family and I decorated her grave. We covered the earth with white stones, in a way I suppose they symbolise how pure her spirit is. And around the grave with wooden curbing's, we didn't like the idea of stone, so cold and hard and lifeless. Perched on top of the stones and three white baby angels holding small cross shaped lights. The grave is full of flowers of bright colours and during the spring the flowers are full of life with butterflies and bees. Dotted around the grave are little garden lights that light up at night and shine so bright you can see them glow from across the graveyard. A beacon of light vast as she was when she was with us. All of there factors together make her grave not a reminder of the pain of loosing her but a monument to the joy she brought to our lives in the short time we had with her.

It is not just the look that makes it such a beautiful place but also the memories that are brought up by it for example the day she was born or the way she used to kick and how she could fill my mother with happiness with just a smile. She would cry when she was put in her basket and would stop as soon as she was picked up. For me the fondest memories of her is the day she was born when I first held her. She was so small and delicate. I would give the world just to be able to hold her again. All of there memories are brought to the surface when I visit her grave. 

Even though her grave is not yet finished as we still have to get her permanent headstone, to me it is beautiful. And when her headstone is placed on the grave it will read

Muireann Shionagh Dunne 15/04/12 - 27/05/12
There is no foot too small that it cannot leave an imprint on this world

Muireann and Conor <3

Wednesday, September 18, 2013

Maggie and Violet's Story, by their mama

Post by Elisabeth
I am a mother

For many, they may not see that of me, but I am a mother. I was pregnant, watched my belly grow, could feel my daughters move and delivered them both. The difference was, they were not born alive. My husband and I did not get to take them home. We are parents to two angels.

On October 2, 2010 I married my best friend, Ryan Barlowe. We were introduced by two good friends and weren't sure the relationship would work. See, he was active duty Air Force and stationed in Anchorage, Alaska. I was working as a probation officer in Santa Barbara, California. We started talking and, boy, did we have a lot in common. We took a chance and I went to Anchorage to meet him. Since that day, we never looked back. We knew we were meant to be together. We met the challenge of a long distance relationship. Ryan proposed on May 28th, 2010 and we were married on October 2nd, 2010. I packed up my world and moved to the Final Frontier to start my life as Ryan's wife.
What an amazing journey! We always knew we wanted a family and we decided to start trying the beginning of 2012. We weren't sure what challenges we may face. You see, I'm considered high risk due to a kidney disease I was diagnosed with as a teenager. One of the side effects of the medications I was previously on was possible infertility. I had never been tested and we thought, let's just give it a shot. In March, we took a test and low and behold, we were pregnant. Our first daughter was due November 17th! We were so excited and couldn't keep it a secret. We told my mom, his parents, our friends and family. Our first appointment went well and we saw and heard baby's heartbeat. It was strong and there was our baby on the screen, bouncing around. It was surreal. We were going to be parents.

That would be our one and only appointment filled with good news. At 15 weeks we were told our little girl's brain didn't develop and she had a hole in her heart. These were signs of a chromosomal abnormality. We had heard of the risks of an amniocentesis and opted to not have it done as there was nothing we could do to change what we already knew and we knew we would always choose life. We chose to get a second opinion, as our first doctor pushed termination on us. Our new doctor understood what our goals were, to hold our baby if at all possible, even if it would only be a matter of minutes. But we wouldn’t even get a few minutes. The doctors both believed it appeared that our baby had Trisomy 18 and therefore was "incompatible with life" and there was nothing we could do to change it. Maggie was obviously compatible with life.  Her heart was beating; I could feel her move inside of me.  She was our daughter and she was going to have the longest life possible.  We chose to give her life, as long as we could. We made it to 26 weeks when our Maggie's heart stopped beating. We induced labor and delivered her on August 9, 2012. We were able to hold her, love her and spend time with her with the compassion of the hospital staff. We left the hospital, but without our little girl. We were devastated. Our world was turned upside down. We had nothing...nothing we wanted. We were parents without our baby. We'd never see her grow up, laugh, cry or even breath.

Ryan and I turned to each other through everything. We decided early on we would go to grief counseling. We actually had started the week before we lost Maggie. It helped. It was a safe place to talk about our sadness, anger, guilt and anything else we were feeling. I remember, as does my husband, what our doctor said to us after she confirmed the Trisomy 18 diagnosis and cried with us. She said something like this can either make or break a couple. She said to make it you have to realize that you both will grieve very differently and to respect that difference and don't resent it. We did grieve differently. As I would cry and become emotional, Ryan would get angry and lose himself in hobbies. But despite those differences, we turned to each other. Ryan would hold me while I cried and talk to me when I needed it. I supported Ryan's hobbies and talked him through those bouts of anger to allow us both to better understand what we were feeling and pinpoint those emotions. We actually grew closer through our sadness and grief.

We had decided to go ahead and have an autopsy performed on Maggie to confirm the diagnosis of Trisomy 18 and see what that meant for us with future children. When we got the pathology report, the prognosis was confirmed, but our doctor also told us the chance of this happening again with future pregnancies was less than 1%. Through our grief, we had a positive outlook for our future family. We could try again. And we did.
It was time to leave Alaska! My husband received new orders to Hickam AFB in Hawaii. The day before we were set to leave, we took a pregnancy test and were pregnant!! The level of excitement matched the level of fear we were experiencing. If our math was correct, we were due August 23, 2013. That was going to be just a year after we lost Maggie. But we had faith, we had to, that everything was going to be okay and this baby would be our rainbow baby; our calm after the storm of losing our first daughter.

We shared the exciting news with our families, but reserved announcements to everyone else until we got further along. We arrived to Hickam AFB and scheduled our first appointment at Tripler Medical Center with their high risk doctors and genetic counselors. At our first appointment everything was great. Baby's heartbeat was good, my health was good and all was looking good for us. Thank God! We were praying every day that this time would be different.

We went in for our 20 week ultrasound and were anticipating finding out the sex of this baby. The ultrasound was going well. Measurements were good, baby was moving and we found out we were having another girl!! It wasn't until the last few minutes that we received news that our daughter appeared to have issues with her heart. We were being referred to a pediatric cardiologist for a more thorough scan. Three long weeks we waited for that appointment obviously expecting the worst, because we had already experience the worst...losing a child.

At the appointment we found out she had a heart defect that would require heart surgery in the few first months of her little life, but was fixable. They have done these surgeries for decades and yeah it was risky, but the outlook was good. They didn't see anything else but the heart defect. We went home and cried, but were grateful it wasn't worse. So we told family and the prayers continued. We were told that the surgery couldn't be done on the island and we'd have to leave by 32 weeks to have the surgery somewhere else. We picked Primary Children's Hospital in Utah because my husband's family was there and we could stay with them. Family is so important at times like this and we didn’t have family with us before and with the Air Force in agreement of us going, we knew our baby would be taken care of.

It wasn't until we got to Utah that things started looking more dire. We were scheduled for NSTs (non stress tests) twice a week. The first few went normal with no issues, but the last one showed our little girl Violet's heart rate was taking dips and we also had high amniotic fluid. We had polyhydramnios, which they said could just be a freak thing or could be a sign of chromosomal abnormalities.  They decided to do a special ultrasound, a biophysical profile on Violet. They look for certain movements; hands, feet, fluid level and breathing. They got all of them but the breathing, so we were admitted for more long term monitoring. We also decided to do an amniocentesis. An NST was done following the amnio and her heart continued to take dips.  So they kept us admitted to the hospital until the results could come back. They were worried that Violet may have Trisomy 18, like her sister. They saw clenched hands during the ultrasound and a piece of her brain was missing that should have been there.

On Friday, July 12, 2013 we were told our baby Violet had Trisomy 18. We couldn't believe it!! How could this happen again?!?! Less than 1% chance was what we were told. This led doctors to believe either Ryan or I may carry a balanced translocation. This would mean that two of our chromosomes exchanged places on the DNA strain but would be balanced on us, but during conception would result in a chromosomal abnormality in Violet. We decided to leave the hospital and would continue with life as long as Violet could stay with us. The doctors were in agreement because they wouldn’t do any emergency procedures to save her. On the following Tuesday, we went in for our regularly scheduled appointment and our doctor told us the devastating news that Violet's heart had stopped beating. We were in shock. Fortunately, we had family with us and they drove us home in a daze. As we told the rest of the family, we were all clearly in shock. We couldn't believe this was happening again. I really believed Violet was going to shock the world and be born alive. I was broken and lost. We decided to head back to the hospital that evening to be induced. Our Violet was born sleeping on July 17, 2013.

Both of our girls are buried with my father (who passed when I was 15) in California. My husband and I returned to Hawaii and into our empty house. We had our sweet puppy, Charlotte, who is now 3 years old, to bring us some happiness and keep us from becoming too lost, as she needs us.We've started grief counseling again and it seems to be helping. Sometimes, I feel like I'm doing better this time around, almost too well. As soon as I get that feeling of guilt for doing too well, I realize I'm not doing too well. I'm doing just well enough. I have my days of total despair and tears flow readily. I'm back to work now and luckily work in an environment and with people that offer me support and compassion during this emotional time. Part of me welcomes the distraction but part of me just wants to avoid everyone and do nothing.  But I know to do that would be to open a door to a dark place I really don’t want to be in.

Ryan and I can still laugh and that alone makes me realize we'll be okay. We don't know what the chances are of Trisomy 18 happening to us again, as there just is no research on two times much less three. We told ourselves we're going to wait a year before trying again or trying anything. We know that adoption is always an option as is in vitro fertilization. Through all that we’ve gone through, we chose love and life and because of that we have no regrets. We obviously wish our girls were here with us, but for now, we lean on each other and grieve for our daughters, Maggie Elisabeth and Violet Ryan.


(we didn't have pictures taken with Maggie, which we regret, but we did with Violet.  This is of her perfect little feet and our wedding rings)

Tuesday, September 17, 2013

Beautiful Moments, by Hope's mama

Post by Stacy 

Read Hope's story here

Here I am...sitting on the precipice of letting her go. Things are kind of ok now. I no longer feel like everyone I meet needs to know that we lost our precious baby or that they need to know our story. Hope is sacred! Hope is ours! Hope was here and she is real! But even more important, she is safe, loved and happy. I'm finally feeling like its ok to not let our loss rule over me. That it's ok to be happy again and enjoy the life we have. And that it's ok to not feel guilty anymore. 

Although none of this means I will ever forget her or forget all that's happened. Or that I will stop noticing the gaping hole in our family that was left by her passing. It's all changed me and shaped me into who I am now.
That hole is always there staring at me, reminding me. Nope, forgetting is impossible!!!
Just like a couple of weeks ago I took a picture of our 4 earthly kids at the lake. They were all kneeling on a bench and looking out over the water. After I took the pictures I went back to look at them and saw an empty spot right next to Audrey that just naturally was there on its own. A spot that should be filled with a chubby little toddler with long brown hair.

A beautiful little girl that should be here to wrap her sweet little arms around us. Hope should be here calling me mommy, nestled at my breast, getting spoiled by her siblings, telling us what color is her favorite, coloring us pictures, making up her own adorable funny versions of words, cheering her sister on at cross country meets, cuddling with her daddy and keeping him warm like our 4 other kiddos have when they were little. But for now, we can only imagine and dream of doing those things. How I long for the day when I can hear her voice when she finally calls me mommy. I want to look at her face and tell her all the things this mommy has desperately wanted to tell her baby....
Almost 3 years ago I never thought this moment or these feelings could come. I read that it can take up to 3 years for all the different phases of grief to take their course. Reading that, a week away from Hope's departure from my womb to a very short 32 minutes on earth and then into Jesus' could I possibly live 3 years??!! Let alone the rest of my life in such agony?!! What would I do?? How could I do this?? Why did I have to do this? Why me? Why our family? Why so much hurt, emptiness, brokenness?Who am I and who Am I in Christ since this? Who is this woman that's still suppose to be a wife, mom and friend? How in the world was I going to fulfill all of the demands and normal day to day needs that my family and everyone else had for me when I was filled with a yearning for Hope so strong it seemed I might die before it could possibly get better? And why so many unanswered questions? Having to live with all of the things a woman's body goes through after having a baby and having no baby to need those things is just as hard as the loss. It's a cruel physical reminder that the baby that was meant to be nurtured isn't there to need nurturing! A cruel reminder that the baby I prayed over, carried for 32 weeks and wanted so badly to hold and love was gone.  If there was an easy button for this part I would have gladly used it!
All I've known is being a mommy. My biggest fear has always been the possibility of losing one of my children and that fear became a reality. I still don't know exactly why such a tragedy is a part of our family and journey. And I'd like to say I embrace every possible moment now or hug my kids a little longer or make the most of everything with them.
I sure try. Especially moments when I know I need their hugs or they need mine. But sometimes life is still so hard to get a hold on. The damage is done and sometimes it still hurts just a little too much to fully love and live. But I am sure trying and catching small glimpses of the beauty that God gives everyday. And everyday those small glimpses seem to grow a little more. They come in the form of laughter, smiles, fun, enjoyment and beauty within my family and friends. The real kind of laughter that makes you lose your breath and cry tears of merriment. The kind of smile that doesn't have to be faked so everyone on the outside thinks your fine when your truly dying inside. It's a real smile that's not masking the hurt from the loss. The kind of fun, enjoyment and beauty that only comes from God when He peels back some layers of calluses that are built up on the heart that's been shut off and closed down for too long. It's beating again. Breaking free! One beautiful moment at a time! Sometimes that's scary but more and more it is freeing this broken heart to live and truly be alive!
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