CHD awareness week: Life and loss

I often talk about the immense fear I face everyday with the thought of losing Evan.  It’s suffocating.  But, it’s just talk….just thoughts.

Here are two stories of mothers who lived through every parent’s worst fear.

Thank you, both, for sharing your stories of strength, hope, and courage.

Meet Katie: Heart Mama to Angel Rowan:

My journey as a heart mom starts with the diagnosis of my daughter, Rowan. I was 19 weeks pregnant and found out at our anatomy scan that there was something wrong with her heart. Confirmed 4 days later that she had Hlhs, or half of a functioning heart. A term I had never heard of before and suddenly I was thrust into a world of scary possibilities, unknowns, surgeries and I had to reroute my plans for my daughter. My husband Ryan and I looked at different hospitals, surgeons, went through interviews and chose a children’s hospital nearby to deliver at and have her surgeries.


12/12/11 our heart warrior was born after a smooth induction and taken to the NICU where she was monitored. Four days later she had her first surgery, the hybrid Norwood, and came back to stay in the PICU. 6 days later she was back in the OR having her pulmonary bands loosened due to low O2 saturations. We were finally discharged 12/29/11 and it was quite the adjustment caring for a cardiac baby at home, no help, no nurses, lots of medications, tube feedings, weight and o2 checks.
At her next cardiology checkup, a week later, her doctors decided they wanted her cath-lab sooner than later.
1/8/12 we were readmitted and the following day she had her atrial septostomy. She had complications in the cath lab and her heart rate dropped down to the 40’s and required chest compressions. What normally required a three day recovery ended up being two weeks.
We did make it home again and after a while of ND tube feeds, we decided we should go the g-tube route since her reflux was so bad.
3/16/12 Rowan went back to the OR for her G-tube and fundoplication (a trap door at the top of the stomach to prevent food from coming back up).
Overall she did well with her new feeding tube though we did have some complications in the beginning with poor healing, leaking, and temporarily being put back on ND feeds. Our little warrior fought on and life went back to “our new normal” for a while.
The month of April we managed to stay out of the hospital and just got to enjoy our precious little daughter. She had us all wrapped around her finger especially her big brother.

In May I noticed she was retaining a lot of fluid and having labored breathing, excess sweating, so we ended up back in the PICU to adjust her diuretics and monitor her closely.

I knew her second surgery (and larger of the two) was near as she was outgrowing her pulmonary bands and needing supplemental O2 all the time. Her doctors informed me her surgery would be 6/1.
After one more PICU stay for diuretic adjustments, we were then admitted a few days before her big day. They planned to intubate her the day before and place a Picc line. That was unsuccessful, and Rowan returned to her PICU room, intubated. I was unable to hold her, and it hurt knowing I couldn’t until after her surgery.
6/1/12 our big day was finally here and I was scared out of my mind. Was I ever going to hold her again? Would she make it through surgery? So many questions pulsing through me, and scaring me. Transport came at 7 and at 9am surgery started. We waited in a room full of older people- most had husbands, uncles, fathers, mothers in for heart procedures. No one waiting for their infant.
Dr. Carl came out and talked to us about her pulmonary valve that was not looking good, it would need to be repaired or replaced and they would determine soon.
It’s was 4:30 pm and Dr. Carl said they would have to replace the valve and take her off bypass while the cadaver valve thawed.

6:00 pm Dr. Carl said heart was liking the new valve much better and she was off bypass. They would finish up and come update in and hour.
6:30 pm Dr. Carl comes out with a worried look. He is not one for hiding his feelings very well.
“Rowan did not tolerate coming back off bypass, she is in critical condition and will be put on an EMCO machine (machine that circulates and oxygenates blood) so her heart can rest, she wont survive unless shes on it. There is also a lot of bleeding they are trying to control. We will update u as soon as possible”
10:30 they are still trying to stop her bleeding and having a very difficult time keeping her stable
I sat on the ground hearing what no parent wants to hear. Your child is on life support and has a 50/50 chance of pulling through. You see the looks on the doctors faces, and you get really good at reading people. I was angry. I was surround by family but I just wanted to be left alone.
I waited until after 1 am (almost 15 hours of surgery) to hear that the bleeding was under control and my baby was alive. PRAISE GOD. Her fight was FAR FROM OVER.
She returned to the PICU and came with lots of equipment and machines. And so many doctors, nurses, surgeons, specialists. It was overwhelming, but there in the middle of it all was my precious Rowan. Hidden under so many tubes, IV’s monitors to keep her alive.
It was touch and go the next few days, small improvements, then a set back, never knowing just where the day would leave us. We never gave up on our daughter though, I knew she could overcome this if only she could rest and heal.
Her doctor informed me that they would need to decannulate her from the circuit sooner than later because it wasn’t a long term solution. They successfully managed to remove the cannula from her SVC but couldn’t go any further. They planned on removing the rest on 6/11. This was our last shot it and seeing them take her away that last time felt unlike anything I’ve ever experienced. Her life flashed before my eyes and I knew it was then a waiting game. Her room felt so empty and lonely without her and I sat there with Ryan, nerves shot, just staring at the clock.

Waiting.
Dr Carl comes into our room 3 hours later and said things were not looking good, that she had a 5% chance of survival.
He left and came back soon after and I knew she was gone. I swore I was dreaming some horrible nightmare. Losing our daughter was not suppose to happen yet it did. I was in shock for a while, then the waves of uncontrollable crying came. We had our photographer come in and capture the last moments we shared with our precious little

Sparrow. Our Rowan flew to heaven the day before her 6 month birthday.

Not a day goes by we don’t mourn the loss of her and the happiness she brought into our lives. We are learning everyday of life is blessing and that there is no better time than the present, so make it count. Our Rowan made every minute of her life count and she taught us so many things.
Healing and grieving has been quite a process since she passed as I am sure it is with anyone who experiences losing a child. Your life is forever changed and the loss is like a rock thrown in your smooth pond. The ripples radiate outward and touch, therefore affecting everything in their path. There is no going back and undoing what happened. No unseeing what what witnessed. No way to erase emotions felt.
I feel this grief is like an ember that is always smoldering, sometimes on bad days it catches and ignites, somedays outsiders almost can’t see it. But it’s always there, and you never know what kind of day it will be.
Shortly after losing Rowan we discovered we were expecting our third child. We always planned for another baby but didn’t expect things to happen so quickly. Excitement turned to fear, adding on anxiety and guilt along the way. Would we lose another baby? Would he or she have a heart defect? Will Rowan think I’m replacing her? Add pregnancy hormones and grief and its a messy, unpredictable combination. Thankfully Jake and Rowan’s little brother has passed all the scans thus far and appears to be healthy. Putting my trust in God to take the wheel again and knowing he is in control was honestly very hard. I felt like I had been forgotten, or my prayers unheard and that the life and healing had been saved for the next baby in need, not my baby. Everyday is a struggle still but I will continue to try to make the best of it and trust in His master plan.


Jeremiah 29:11
New International Version (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

 

Meet Angela – Heart Mama to Angel Isabelle 

(Please visit Angela’s blog at http://www.isabellesheart.blogspot.com/

My Angel is 3 Months Old!

Dec. 22, 2012

Three months today I had to “physically” let get go of my Isabelle.
She will forever and always remain in my heart. My arms feel empty and I still feel a bit lost.  The pain is still very raw. Everything about my body is telling me that I should have a baby in my arms, even my mind tries to tell me this – but the reality of it all tells me something totally different.
Looking out the window the other day watching the leaves swirl around aimlessly reminded me of how I felt – like those leaves.

This is not going to be a “easy” Christmas for me.  I am grateful for Chloe and my loving husband Adam – I am not sure how I would be without them.
This will be my baby’s first Christmas in heaven!

Setting up a Christmas tree this year wasn’t something I WANTED to do, but knew I had to for my daughter, Chloe.  She needed to have that AWW moment when she got to see a Christmas tree all lit up.  I decided to set it up while she was napping that way it was REALLY a surprise for her when she woke up – and it was! I am glad now, that my husband drug it out of storage and that I set it up; Chloe just loves to look at it, touch it and tell me what colors she sees.  She brings the JOY of Christmas to me.

 

In my next few posts I will be “backing up” to the day we found out Isabelle had to be delivered…. to catch up so it, my story, our journey will make more sense. It, again, may take me some time but THANK you all for your patience, understanding and for following my blog!
MERRY CHRISTMAS TO YOU ALL! 

CHD awareness week: Full Plate Mama

When I think about how hard this heart life is, I’m often brought back to the mere fact that Evan was born to me and Craig.

For whatever reason…we were chosen for this task.  Chosen to take on the call of raising a child that is medically complex.  Chosen to love a child for however long we get in this life.  But, really…just chosen to be his parents.  To love him…he’s just our boy…with just a heart that is more special than most (and a smile that is killer….).

Meet one of the most incredible people I have ever been privileged to “know.”

This Heart mama has been chosen…chosen by God to love and raise her beautiful children…all adopted.  But when I read about her life and her story, I don’t see her children as anything but that…hers.  Hers to love and raise for as long as God allows.

And, truly, aren’t all our children the same thing…whether sharing the same DNA or not…aren’t all of our children God’s….we just get to raise and love them for as God lets us.

Meet, “Dolly”, who she adopted to complete her growing brood.  The perfect puzzle piece to complete their family…broken heart and all.

 

Hello everyone! I am FullPlateMom, and this is my husband, FullPlateDad, and my
daughter, Dolly. I’m writing this guest post the weekend before my daughter will have
the first of multiple surgeries that, we hope, will begin the process of fixing her tiny heart
that should have been fixed so very long ago. By the time you read this, we hope she will
be well on her way to recovering from this major surgery. Suffice it to say, this is an
emotional time for my husband and I as parents. I’ve written, deleted, and then rewritten
this post more times than I care to count.

I have been blogging at The Full Plate for over three years now, and I have never guest
posted anywhere. I’ve been asked, but I’ve just never been able to do it. I’ve never felt
like I have anything important to contribute. After all, I’m just a mom. When Czarina
asked me this time, I jumped at the chance. Evan’s story, my daughter’s story, and the
story of every child affected by Congenital Heart Disease has become near and dear to
my own heart, even though I’ve only been a ‘heart mom’ for three short months.
The Full Plate became an outlet for my nervousness as we entered into the world of
international adoption. My husband and I are adoptive parents of eight children. Yes, I
said eight. The story of how we have been so blessed to have that many children call us
mom and dad could be a book of its own. This post is about our youngest daughter
though. She is referred to as Dolly on our blog. On the day she rolls into the operating
room to have her backward heart repaired, she will turn two years old. Had Dolly been
born in the U.S., this repair would have been done prior to her turning two months old.


Living this long with her condition is a true miracle.


Our daughter is a living, breathing miracle.


Dolly’s story in China is something we don’t talk a whole lot about except with her
brothers and sisters. For kids who come from hard places, their story is their story. I
don’t talk about what Dolly’s life was like in her orphanage. Telling those kind of
personal, intimate details might be a cause for embarrassment or shame for her in the
future. Our daughter should never be ashamed.


She is the strongest little girl I know.
Czarina asked me to write about why we chose to adopt a little girl with Congenital Heart
Disease. The short answer is, we didn’t. We chose to adopt Dolly. Her heart was
something that came with the amazing package that is her. So many amazing kids who
wait to be adopted happen to come with a special need. We don’t think that is what
defines them.


My husband and I are just like any other parents who sees their baby, either on ultrasound
or at birth, and decides that all they can do is put one foot in front of the other. It’s all
you can do. You love a child, that child has heart disease. You play the hand you’ve
been dealt. I’ll freely admit, it irks me a little when people tell me ‘well, you chose this’.
No, no I didn’t. I chose to adopt this amazing little girl. I want her to be healthy. I
didn’t choose for her heart to be so very broken. And this certainly wasn’t part of her
plan. She doesn’t want any of this. She has had to struggle to fight and survive longer
than most other children with this wretched disease. The complications of this will likely
be life long for her.


The only choice I made was to not say NO to adopting her, like so many before me had.
Saying yes doesn’t make me anyone’s hero though. Not at all. I’m just a regular mom.
The only hero in this equation is my daughter.


She fought so long, and so very hard, to live until we could get to her.
A year ago this month, I looked at Dolly’s picture for the first time. She was listed on a
waiting child list with an adoption agency that is well known for trying to find families
for children with severe special needs. I opened her little file and knew, beyond a
shadow of a doubt, that she was my daughter. I’ve never given birth to a child, but I
would imagine opening that email attachment would be akin to the moment a newborn is
placed on a mother’s chest after birth and she thinks ‘and now you’re mine’.
I knew I was her mom.


And, yes, I knew all about her heart.


Her condition was described, very accurately, in her file from China. The government
there just doesn’t fix these kinds of things for orphaned children. So, our Dolly remained
unrepaired for a very long time.


Her little body compensated to allow her to grow and develop. Unfortunately, the ways
her body compensated have caused major damage to her lungs. Her little lungs have
fought to give her brain and major organs the oxygen they needed to stay healthy. For
lack of a better word, they are overworked.


Yes, we knew this was a possibility. We knew that we might get her home, all the way
across an ocean on a flight she would undoubtedly struggle to survive, to be told she was
inoperable, that there was nothing any surgeon could do to fix her. We researched, we
learned, we knew all this.


Ultimately, we learned that we had NO clue.
I brought Dolly home and, just like every other child that has joined our family, she fell
into the fold seamlessly. She has become the light of our lives. She is amazing. She is
funny. She is so smart. We had no idea how much we would love her the minute she
entered our world.


After her first cardiac catheterization, the test that is done to give us an idea of just how
damaged her lungs were, the doctor came out of the room and told us that we needed to
consider her quality of life, that her lungs were very damaged, that she was considered,
for right now, inoperable.


I felt my whole world collapse. I broke down, right there, in that little recovery room and
sobbed so hard into my husband’s chest that a nurse came and discreetly shut the door to
drown out the noise. Yes, I was that mom.


The doctor’s words to comfort me… “well, you knew this might happen”.
No. No I didn’t. There is NOTHING that can prepare a mom for losing, or being told
they might, lose a child. Adopted or not, there is nothing like the pain that comes with
that.


Thankfully, that wasn’t the case, or we hope it won’t be. Just like any other parent, we
fought, we prayed, we begged, we consulted, we emailed. Luckily, we found a surgeon,
at a larger medical center, who thinks he will have great success fixing Dolly’s heart. We
pray this is the case. This week, I left my husband and seven other children behind to
move two hours from home to try to have the surgery that will save our Dolly.


This is what Congenital Heart Disease does to families.


But, our little girl has a chance. Some kids don’t. As we fight to fix our little girl’s heart,
I feel called upon to advocate for the kids who still wait. There are so many of them! So
may wonderful, smart, funny, amazing kids who happen to have congenital heart disease.
No one should ever feel guilty for not feeling like this is something they can take on. But
I will tell you, that with the hard spots, there are so many wonderful, life-changing
moments.


–FullPlateMom,


who has a whole lot of waiting kids listed on her blog this week. And, if you want to pop
over and leave a message for our Dolly as she recovers, we would LOVE it!!!


www.fullplatemama.blogspot.com

Edited to add: Today is day TWO post-operatively for our daughter. She is stable, and
her repair looks wonderful. We are so thankful for our tiny miracle.

CHD Week: It’s the absence of fear…

Flipping the switch and expecting a light to turn on.

Sitting down and expecting the chair to support you.

Closing your eyes and expecting them to open again.

All these things, some small, some big, exhibit faith.

How…when life throws you the biggest mountain to climb in a diagnosis a child’s heart that may not beat for a lifetime….when in climbing that mountain boulders and rocks are rolling down making that climb more difficult (whether its in a difficult surgery, additional diagnosis, struggles in recovery, fear, money, marriage woes…)….do we – those in the Heartland that are believers – still have faith?

Some of us…struggle…some of us….are steadfast.

All of us…are learning to pray without worry, love without anger, have faith with fear.

Elissa’s faith story – Heart Mama to Isabelle – Hypoplastic Left Heart Syndrome

One of my heart mama friends is posting various commentaries written by other mamas on specific topics to raise awareness for Congenital Heart Disease this week. The topic I wanted to write about is how the diagnosis of CHD affected my faith.

There is a story in the Old Testament about a woman named Hannah who was childless and prayed for a son. She went to the Temple in Jerusalem (I think- I am assuming it was there because…well….there was only one and that was it) and pleaded her case  to God. A temple elder thought she was drunk and scolded her but when she told him why she wept, he softened and prayed with her. She promised that if she were to get pregnant, she would dedicate him to God.

I prayed in synagogue when I was pregnant with all of my children. I made my own promise of dedication in exchange for healthy babies whom I would love. On March 5th, God gave me His answer. Hypoplastic Left Heart Syndrome. My baby would not live without surgical intervention. It still takes my breath away.

Here’s the thing- for most people, CHD brought them closer to their faith. For me, it had the opposite effect. I was (still am most days) angry. I want to know why He gives mothers babies and then takes them- through no fault of their own. I want to know why he has given me the good chance that I will outlive my daughter, that she has a 50% chance of making it to adulthood. Why would He do this to me and countless other people?

After seeing another mother lose her baby after receiving so much hope, I lost it. I couldn’t bring myself to say that I would send prayers to people who asked for them. I am afraid to. I feel hypocritical doing so. Part of me ‘wishes’ that the child recovers or the parents receive the strength they need, but I cannot formally pray. I try. Especially for the mamas I have come to know and love, and whom I know believe so I want them to get what they need.

I had faith until it became clear to me how much I had to lose. Isabelle’s middle name is Faith. When I was terrified of what we were getting into after her diagnosis, I wanted to remember what would hold me together in spite of my anger. Sometimes it occurs to me that we were chosen to have Isabelle. She is such a love and has blessed my family in so many ways. She has shown me a strength I never knew existed in myself. In those moments, my faith comes back for a little while until the fear creeps back in.

My hope is that once again I will get to a better place with all of this and be able to open my heart to the God I loved. There was a time I really believed that I was the daughter of God and He loved me. I wrote it in my journal after struggling through my first year in sobriety after hurting so many people including myself. I felt so awful and my good friend told me that I shouldn’t be so hard on myself, that I was loved by something greater than me. It helped me get through some really down days when I could barely look up from the sidewalk. . I had faith until it became clear to me how much I had to lose.

A very wise woman once told me that faith is the absence of fear. I know she is right.

Erin’s faith story – Mother to Caylen – Heterotaxy syndrome

I always thought my faith was strong, that it gave me the strength to face the adversities and obstacles in my life; but also helped me to appreciate the little and big things, to find joy in everything.  That is until Caylen was born.  We were told we couldn’t have children that we would have to adopt.  So, imagine our surprise when we found out I was pregnant.  It was a difficult pregnancy due to my age (40), my diabetes and other health issues, and that I had back surgery the year before.  As far as we knew, the baby was fine, though, no issues there. 

The last five weeks of my pregnancy, I started showing signs of preeclampsia, but without the high blood pressure.  I swelled badly, my amniotic fluid increased exponentially.  Finally, at 38 weeks, Caylen was born by c-section.  Caylen was born not breathing.  She was rushed to the NICU and we didn’t hear anything for hours.  When the doctors finally came to talk to us, it was to tell us that Caylen was born with heterotaxy, with multiple CHD’s, and that her chances of survival were very, very small, and that perhaps we should contact a funeral home.  We were in shock, completely divested and speechless.  Just 14 years before, my brother and his wife had lost twin girls who were born too early due to placental abruption.  We just couldn’t believe God would take another child from our family, not again.

Immediately my parents began making calls, and those people began making calls and sending emails, placing Caylen on every prayer list they knew of and could find.  To this day, I credit all those prayers with helping save Caylen’s life.  Saving her was touch and go for a long time, but incredibly, she began to beat the odds and overcome all the obstacles in her way.  I see God’s Hands all over that.  Why?  Because it took her doctors over three weeks just to figure out all her heart defects, and the ones they knew about right away?  By all rights, Caylen should NOT have been able to live with them.  Even her doctors believe God intervened.

As for my faith, I was angry, I was hurt, divested, and I felt betrayed by God.  Even more so, I felt guilty, that I had done something to cause her to be born like this.  I was unable to hold Caylen until she was two weeks old.  I was scared that we wouldn’t bond, and I blamed God for this.  When I was finally able to hold her, from that point on, I spent hours and hours crying over her, asking “Why?”  I was confused as to why God gave us Caylen, only to take her from us again so soon.  I didn’t have the faith that He would save her; I only saw loss and pain.  It was my husband who held us together, praying, encouraging, loving, and helping me to see God’s love and mercy.  He encouraged me to pray, to talk to God, to LISTEN, and to give Him my pain. 

It was during one of my prayers of desperation, God literally spoke to me.  It wasn’t a voice out loud, but a voice in my head and heart, one that spoke with determination and love; it was a father’s voice to his child.  God told me He had given Caylen to us as an honor, not as punishment.  He blessed us for a reason.  He gave Caylen to us, not someone else, as no one else could love her, fight for her, advocate for her, teach her and guide her as David and I could.  No one could be better parents to this special child than us.  THIS is why He gave her to us.  Hearing this voice, hearing these words brought on another storm of tears, of pleading.  But, deep down, God helped me understand that it isn’t my place to know the why’s of all of this.  It’s my place to have faith, to believe in the unseen and unknown, and to trust Him to do what is best, whether or not I agree with Him, or understand. I still struggle with this, I won’t lie.  I still have fears and terror, anxiety and sleepless nights, tears and pain.  I still watch my child suffer, and wonder how to help her, and even how long I will have her. 

Through this journey and struggle, I have seen miracles done in my child – a life that shouldn’t be, is, it just IS.  I have seen her touch lives, and shine God’s love through to others.  Through Caylen and this journey, I have learned what true faith is, and what it isn’t.  I know many people won’t agree with me, and that’s okay.  This is OUR journey, and MY faith.  It’s what it means to ME, for ME, and what it does to help ME that matters.  I hope and pray that some people get something out of our journey, find a bit of hope or strength to help them.  I hope they see God in our lives, because believe me, He IS there, without a doubt.  But, faith is personal, it’s deep inside one’s self, and I can’t have it or find it for you.  I can just tell how I found mine and how it gives me a live better than anything I could have dreamed of or hoped for.  How it makes the hardest days bearable, and the good days amazing.

I had faith, but this beautiful miracle of life I call my daughter taught me what faith really is.  She is only on loan to us from her real Father, her Heavenly Father.  I don’t know how long we will have her, but we will cherish each and every moment with her.  Faith learned and lived through Caylen is praying for good cardiology reports, and praying for strength when her body falters.  Faith is seeing the amazing love shine from her eyes and heart, and hearing that sweet voice say “I love you, Mommy!”  Faith is trusting God to get us through the bad times, to lift the despair that those times bring.  Faith is letting God bring rays of hope and peace into the good and bad, seeing the joy in everyone and everything around us.  Faith is not knowing the bigger picture, but letting God and His glory paint it for you moment by moment.  Faith is trusting that if the worse happens, if He calls the light of our lives home before us, we won’t just survive, we will thrive.  We will honor her life and her miracles by spreading her story, helping raise awareness of heterotaxy and CHD’s, but above all spreading God’s glory to help other families see that having faith can make this journey bearable, make it memorable, make it shine with love and joy in the midst of the darkest, bleakest hours in the valley of the shadow of death.

This is my faith in the world of heterotaxy and CHD’s, and all the other many, many problems my sweet little girl faces on a daily basis.  This faith has allowed me to give my child up to a surgeon to have her heart stopped and repaired (will again) without losing my sanity.  This faith has taught me to pray for God’s will and direction, no matter what it is I want.  This faith is how I cope, how I survive, and how I thrive in a world no parents should know, but too many are faced with.  This is MY faith.

“We are family! We even have a baby with a C-H-D!”

Today’s post is from one of my sisters.  Candice is the middle child and I’m the baby of the family.  Chonnie is the oldest and has taken the reigns of our business we once shared pre-Evan and has a newborn at home.  She wrote a beautiful blog a year ago for my boy.  You can read it here.

Candice has been my “keeper” since college.  She’d call me every now and then and rescue me from dorm food.  She’d slip a $100 bucks in my checking account for beer grocery money.  She took care of me.

Now, she still does.  I’ll never forget the conversation we had when Evan as born. We were at my parent’s house and Craig and I had a conversation the night before about our will.  Candice and her husband had been named guardians for Isabelle in our will.  We weren’t sure what we were going to do for Evan.  I could not ask someone to take on the responsibility of raising him…with his future filled with question marks, surgeries…perhaps a lifetime of them.

Candice, Evan and I were in my parent’s room and I was giving Evan a feed.  And I told her that Craig and I were going to re-do our wills. I was prepared to say, “We are going to talk about who will get Evan if something happens to us.”

She just looked at me, picked up my son – feeding tube coursing through his nose, unafraid to hold him like so many people had been – treating him like he was something other than a baby – and looked right at me and said, “We get him too, right?”

Just like that. Claiming him when I wasn’t sure if anyone would want him.  But, just like years ago…she has always taken care of me…and now she’s decided to take care of the best of me….my Evan.

It was October 14th, 2011.  A day I will never forget.  My parents were visiting my family and I to celebrate Grandparent’s Day at our children’s school.  Then, we get a call…the call I will never forget.  I will never forget the sound in my sister’s voice as she tells us, “Something’s very wrong with the baby.” I will never forget the sound of heartache in her voice as she tries to help us understand the news she has just gotten from her doctor.  I will never forget her pleas and the agony in her voice as she cries, “What are we going to do?” 

That was the day we found out that Evan – my nephew who’s birth we had been excitedly waiting on – a new buddy for my son, Garrett, who at this point, had been the only grandson – may not make it to term.  As a mother, I ached for the possible loss of a child; as a sister – I wanted to protect her and take her pain away; as an Aunt – I wanted answers.  What is this condition?  What can the doctors do?  I researched what I can – trying to feel like I’m “doing something” in such a helpless situation.  I prayed – prayed for God to give this beautiful boy – who has been loved since the minute we found out he was coming – to have the strength to fight.  I prayed for my sister and her husband to have the strength to leave it in God’s hands. 

Forward, nearly a year and half later, my beautiful nephew – who’s smiles melts your heart – who’s strength gives you hope – who’s will has overcome everything the doctor has said.  Congenital heart defect – bilateral cleft and palate – I can give you so many research information on these complicated medical issues.  I can show you what research says regarding prognosis, treatment, etc. I can do that – to raise awareness regarding heart disease and children.  But, I won’t. 

What I want you to know – from an Aunt of a child with these conditions – I have learned that there is a fighter in each of us.  A fight to keep going – a fight to live life – a fight to make each day count.  There are days where the daily frustrations of work, homework, kids not listening (as parents you know we all have these) can be overwhelming – sometimes I forget what’s most important. 

Then, I remember.  I remember that day.  The day we got a call.  The day all of our lives changed forever.  The day the fighter in all of us got just that much stronger. 

–          Candice Matthews (aka Tita Candice J )

 

CHD and the extended family

Tomorrow you’ll hear from my sister.  She wrote about her experience as an “outsider” looking in.

Today, though, I wanted to talk about another kind of family.

The bonds I’ve formed with the women and families online have been ones that have kept me sane, given me hope.  These women have cried with me, rejoiced with me, walked with me…and 99% of them have never met me.

I try to keep my distance and not entrench myself in their lives.  But, it’s hard.  Because with each worried question posted, each plead for prayers for an upcoming appointment, every bit of good news that is shared….it becomes a huge part of your life.

But, keeping a distance is a necessity.  Because, so many of our little ones pass.  It’s what CHD does. It kills the most innocent.

In my time being involved within online groups, especially my Heart Mamas, I have been witness to over 15 deaths.  I have read each  new update of their angel earning wings…every painful post.

They have become a family of sorts.  A beautiful, dysfunctional family where we all share our lives – each of us intertwined and connected by broken hearts.

This family – I have one person to thank for for that.

When I was incredibly lost, scared, hopeless at 24 weeks pregnant with our Evan, I remember Googling “congenital heart defect stories of hope.”  I needed to read about something…someone….anything that would provide comfort for me.

A blog popped up.  I read about an amazing little boy.  Had a look see into the heart of a Heart Mom.  Felt her strength, her fears, her courage.

She gave me hope…not just that Evan would be ok…but that I would, too.

I emailed her…gave her a bit of our back story…letting her know we were expecting a heart baby very soon.  She replied back within a couple of days…and I guess the saying goes, “The rest is His-story.”

God’s perfect timing and connecting me with this beautiful family.

I write about Stefanie today…she has no idea, by the way….because I read her blog yesterday about her boy Logan.

I read that cardiology visit resulted in bad news…and when a visit doesn’t end with…”He looks great!  See you in 6 months!” Rather, ending with “possible catheter…possible open heart surgery (again…)”

I felt my gut wrench for her.  She’s become my family – her Logan – one I pray for daily.  She connected me to the life line I call, “Heart Mamas.” She provided me with links of other blogs that gave me hope.

So today, during CHD awareness month, I want to show you who made me aware, gave me hope, shared her life openly – like I do now with you – the one who reached me and who promised me that no matter what – NO MATTER WHAT – it would be ok.

Dear friend….I pray for your Logan and for your heart and mind today that must be going a million miles a minute.  I pray for the hope to lay prominently in your heart….the same hope you gave me over a year and a half ago.

Read her story, read about her Logan, pray with me…

http://www.whenlifehandsyouabrokenheart.blogspot.com/2013/02/slippery-slope-cardiology-appointment.html

Torn in two.

.Weston -Critical Aortic Stenosis, Mitral Stenosis, LV and RV
dysfunction, 3 open heart surgeries, Primary Pulmonary Hypertension,
awaiting a heart and lung transplant.
Easton 7, Weston 6, Abby 5, Emery 4, Sutton 3, Avery 2, and Ellie 1

Evan, 2, Hypoplastic Left Heart Syndrome and Ellianna is 7.

Jozie, Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Heterotaxy, 5 yrs old, and little sister Emmy, 2.

Bennet- 5 months HLHS with his sister Elinor, 5 years old and his brother Charley, 3 years old.

Luka (4 months old, post-Glenn, HLHS) , Ashton (11) and Zephyr (2).

 

 

 

Bodie, Hypoplastic Left Heart Syndome almost 3, and Sierra, 5 years.

Over the next few weeks in February, I’ll be talking about how CHD has affected OUR lives – the parents, the siblings, our faith – our everyday.  You’ll be hearing from me some days, but most importantly, you’ll be hearing from other Heart Mamas.  You’ll get a glimpse of their life, their choices, their journey.  

Please visit as often as you can in the coming days and weeks and read about amazing stories of faith, families who chose to adopt their heart baby, women who are changing the face of the Heartland by their tireless efforts

 

I wasn’t sure how I’d approach this post.

The thought of writing it felt too painful…too much for my heart to handle.

It’s not really a post about Evan.  It’s the post about his best friend.  His buddy…his sister.

My Iz.

Before

Our lives pre-Evan were pretty great.  We were getting into the groove as a family of three.  Craig and I could not imagine our life without our best girl.  Isabelle is a bundle of energy. Her laughter contagious.  Her kind heart shining as she tucked in her ‘babies” – the monkey, the duck, her Dora doll. She fills our house with laughter, silly songs, bedtime stories, all the goodness that this world could offer – was wrapped up in her.

Having another baby and giving Isabelle a brother or sister was a no brainer for us.  We wanted her to grow up with someone she could call her best friend.  We wanted our house to be filled with giggles in the middle of night, fights over toys, silly stories over dinner.  That was our hope for her and her soon to be brother/sister.

When we found out about Evan’s heart, one of the first things I thought about was Iz.  How would this affect her life?  Could we bring a child into this world that would surely turn hers upside down?  Would I be asking too much from my toddler to grow up much too quickly – because the hospital visits, the separation from her mama and daddy, – all these things shattering her innocence.

Craig and I would often take turns holding our best girl and crying as we tucked her into bed. The sadness was overwhelming – looking at the innocence before us – her sweet face, her heart beating – knowing that the baby I was carrying would not be as perfect as her.

We felt cheated – not just of the dreams we had for our son – but for our Iz.  She wouldn’t have the normal brother she deserved. Would she think all babies born have to spend days, weeks, months in the hospital before coming home?

I could only pray that she would see our fight for Evan and know someday we weren’t just fighting for him but for our entire family.

As the days approached for Evan to arrive, I meticulously wrote out instructions for our families that would be caring for her.  I chronicled her daily schedule, medications she’d need for allergies and asthma, doctor’s phone numbers, favorite shows to watch, favorite snacks.  But, would her grandparents or her aunts know that Ducky was her favorite animal to sleep with?  Would they know to sing her the special “night night” song that she loves to hear as her eyes flutter shut? No…because they weren’t me – her mama.

Craig would try to come home from the hospital to give her some normalcy and let her sleep in her bed.  The thought of being alone – watching Evan hooked up to monitors, constantly being poked and prodded – made my heart ache – heavy with pain and sick with guilt.  Pain for the child that lay before me, guilt for the child that waited for me.

Torn in two.

During

Our hospital stays were much harder than I had anticipated.  The ache of home was great.  The anger I felt for my life was greater.  The worry for Evan and his future so magnanimous.  But, as soon as I heard the familiar high pitched toddler voice of my Iz walk through the hospital walls – I had to push aside all of that and put on my brave face.

She didn’t quite understand why we were still in the hospital.  She craved attention from me and her Daddy. Yet, she would often shun both of us.  Almost in defiance like she was saying, “I’m hurting that you’re not home with me.  So, let me hurt you.” But, of course, she didn’t understand or truly articulate the feelings she had.  She’d wave to her brother.  You know how badly I just wanted to pick up my son and my daughter and feel the fullness of both lives in my arms?  But, it wasn’t possible.  The wires, the tubes…

Never should a child put hands on her mother’s face and ask her, “Mama.  Why are you crying?”  Which happened all the time while we were in the hospital.  Never should a family be torn apart days upon weeks upon months.

Child life specialists were excellent in trying to work with Iz.  But, as I watched Ms. Ashley talk to my daughter about Evan’s heart, the realization of our new normal was excruciating.

There isn’t much fun in hospitals when you aren’t sick.  Finding creative ways to keep Isabelle entertained and engaged was difficult.  Within the confines of a hospital room, there isn’t much to do.  Often, after an hour or so, my best girl would be ready to leave.  I felt my stomach plummet again as I bravely said to her and her Daddy, “Ok – I guess it’s time for you to go.  We will see you soon.”

Soon…because perhaps tomorrow wasn’t a visiting day.

That means I’d miss another day of her life.  I’d miss another bedtime story, another ballerina show, another day of watching Dora.  She’d grow in her sleep.  She’d dream tucked into her bed…

As I lay listening to the sounds of each machine beep, nurses disrupting Evan’s slumber, doctor’s discussing plans…when all I wanted was to be home with her and my Evan.

Never should bedtime prayers be spoken through phones.  Never should “night night” songs be sung across a distance.

Never should I look at one child and ache for his life and ache for home and look at another child and feel the weight of the guilt for the life I’m missing in hers.

Torn in two.

Home

Being home has been great.  No sugar coating, though.  The diva trantrums of my soon to be 4 year old can sometimes be overwhelming.

But, we aren’t separated.

As crazy as it may seem, being home is just as hard as being in the hospital – just a different challenge.

As each day passes and I watch Iz and Evan grow closer, the thoughts of these two ever being apart is a pain greater than anything I’ve ever known.  Iz has a new awareness of her “special” brudder.  She asks about his scars, wants to read the book titled, “My Brother is Having an Operation,” she makes random comments here and there that make me lose my breath.

“Mama – Evan is ok now see!”

“Mama – Evan’s heart is special.  His heart is sick.”

I’ll dismiss the comments with a quick kiss and a hug and answer them as easily and in her pre-school understanding as possible.

Not only is my daughter dealing with the addition of a new sibling, she is having to bear the brunt of a new sibling with so many needs that aren’t of the norm.

We have been told to not let Evan’s heart dictate our life.

How though? How can we brush aside the obvious dangers of our everyday and live our everyday?

We – the three of us – Iz, Evan and I – spend our days at home.  Most days we are dealing with cabin fever.  Most days I try and make the days indoors fun, exciting instead of all day T.V. fest.

She asks all the time, “Mama – why can’t I go to school?”

Crushing.  She doesn’t understand why she was so abruptly pulled out of her routine.  Telling her that the 9 cases of the flu that struck her school put her brother in danger won’t appease a 3 year old.

All she knows is that she is now without her friends, her songs with her teacher, the routine she thrived in.

Any changes in Iz’s routine – as simple as adding in a new therapy for Evan and having someone take her for the morning or afternoon – results in a physical manifestation of her emotions.

She regresses – suddenly forgetting how to use the potty.  She regresses – needing the constant reassurance and coddling of before.

Our new normal becoming her foe instead of her friend.

But, she rolls with it – not having much of a choice.

So, our days start with laughter and giggles of my two littles.  She loves her brother.  Protects him.  Sings to him. Fights with him.  Pushes him.  Prays with him.  Loves him.  Loves him.

As we face another surgery – not just for his cleft lip and palate – but another open heart surgery in the next couple of years – I am trying to find the words now and build up the courage now to explain to her what her brother would go through.

There is a fine line I must tread as her Mama.  I’m supposed to protect her. Keep her safe.  Be honest with her.

I can tell her the doctors will do everything they can for Evan.  I can tell her we will pray with all of our might that he will be ok.

But, I can’t promise her that he will be.

Her life is perfect to her.  I see it – even in the tantrums, the tears she sheds when she is punished for being naughty.  She has a built in best friend.  Evan has a big sister he idolizes.  They have each other.

And I pray they always will.

I’m torn.  I’m torn in two, even now.  Torn for the life that could have been and life that is.

It’s great – the weight of our lives and the uncertainty of Evan’s.

It’s great – the guilt I hold for the time lost with Isabelle and the fear for her of the questions for her brother’s future.

It’s great – the laughter that fills our home with my two littles on a daily basis.

It’s great – the unmistakable bond between brother and sister – one of protection, one of friendship, one of blood between two souls.

It’s great – all of it.

Jarod (14, HLHS) and his brother JW, 18 years.

 

Teagan, 4 1/2 with HLHS., Bode, 2 1/2 years, Gavin, 7yrs old.

 

Zoe Madison, age 2.5 (HLHS), Emerson Kennedy, age 4.5

Piper and her 6 year old sister Rylee. Piper had a heart transplant at 5 months old.

Cecilia, 7 months old Hypoplastic Left Heart Syndrome with big sisters Gina-7, Julia- 5, Anastasia- 4, Sophia 3

 

I’m wearing red.

Hi buddy,

It’s Mama.

This morning you and sister were in the living room.  She pulled out her little Vtech tablet and started playing music.

The song “Friday” blared and squeals – both from you and her – filled our home.

You looked back at me.  You’re pudgy, sticky hands grasping the couch to keep your balance.

Your lopsided smile stretched from ear to ear.  Your little legs moved up and down in rhythm to the music.

Sister giggled and exclaimed, “Look Mama!  He’s shaking his bobo! He’s so silly!”

Then, she quickly gave you a kiss on your forehead.  And that little gesture sent giggles through your body.

I’ll capture that moment in my mind forever.  It will be tucked away in the safe place of my mind marked, “Evan.”

That little space in my mind is growing bigger everyday.  I can’t wait to fill that box with more memories of smiles and laughter.

I can’t lie to you, son. There are other memories in there that aren’t as cheerful.

In that space I have images of me and Daddy hearing about your special heart when you were still safe in my tummy.

In that space I have images of our first moments together…brief…before you were whisked away to be poked and prodded.

I have memories of every I.V. stick, every blood draw.

Burned into my mind forever are images of you before and after your heart surgeries.

I can’t erase the moments I see in my head when we heard that your heart would not be fully repaired.  I can’t move those images when Daddy was holding me and I was sobbing into his chest just pleading to God, “Please.  Just let his heart beat again.”

I can’t.  And honestly….I don’t want to.

Sweet boy.  Know that if I could, I would give you the best, most perfect heart out there. I would gladly lay on the operating table with each cut the surgeon makes.  I would happily be poked a million and one times – just so I can take your place.

But, I can’t.

I don’t know why you have to go through all of this.  I don’t know why you and your other heart buddies have to endure the greatest pains when your bodies are still so little.

I don’t know why other mamas and daddies have to watch their littles endure the pain you’ve been through.

And you, like your other heart buddies, have to carry this burden forever.

I’ve stopped asking those questions.  Those questions don’t help change much at all.

Today.

Today, I’m wearing for red for you.

I’m wearing red because in this small gesture, I’m showing the world that I know someone – how lucky am I – to know YOU – that is still here battling Congenital Heart Disease.

I’m wearing red because instead of asking the “why’s” of your heart, I’m going to start asking the “What’s and the How’s.”

What can I do to help spread awareness of this awful disease?

How do I make people understand that congenital heart disease is just as serious and just as awful as any cancer?

It’s a small thing.  Wearing red.  But maybe it will spark a conversation about CHD.  Maybe it will encourage a new mother to ask for a pulse oximeter test when her sweet baby is born.  Maybe it will tug at someone’s heart strings to donate their money to a cause that is sorely lacking funds. Maybe there will be a cure in your lifetime.

Maybe….the maybe’s are what’s getting me through this journey.

The maybe’s are my hope. My hope for you and for all the others with special hearts.

Today.  I wear red for you because I’m holding onto hope.

I’ll wear red every 1st of February forever.  Because, that’s the hope I have.  That I get forever with you.

I love you, buddy.

So proud to be your, Mama.

Gabe, 18 months, Total Anomalous Pulmonary Venous Return

Caleb, 2 1/2 yrs, Hypoplastic Left Heart Syndrome

Klara, 10 months, Tetralogy of Fallot, Pulmonary Atresia

Zoe, 2 1/2 yrs, Hypoplastic Left Heart Syndrome

 

Join me, please.

I was watching T.V. the other day (shocker…) and a commercial for the Susan G. Komen – 3 day event – was televised.

I thought about my cousin in Seattle who walks it every year for her mother…my aunt…who died when she was in her early 40s.  She left behind her 3 kids and husband.  She was the the 2nd child my grandfather had to bury (he’s had to bury 4 out of his 6 children so far…).

Their saying was, “Everyone deserves a lifetime.”

It bothered me.

A lot.

Breast cancer awareness is absolutely important.  I’m a woman…I have a daughter.  I have a husband..I have a son.  My family has buried women stricken by the awful cancer.

Breast cancer affects us all.

Then…I saw a commercial for St. Jude.  I watched Sean White, the Olympic gold medalist, endorse St. Jude and ask for help for those children battling cancer.  He has had multiple open heart surgeries and is a congenital heart disease survivor.  Did you know that little tidbit?

And that commercial bothered me.

Please.  Please understand.  I do not think anyone – especially children – should have to battle horrific things like cancer.  I pray daily for a few little ones who are in remission.  Gabby – just kicked leukemia’s booty.  Sweet Jackson is in the throes of his battle with leukemia and his journey, albeit different, hurts and dings with every new update I read about him being in the hospital.  I applaud the efforts of both organizations.  I want awareness of breast cancer and childhood cancer.

But, I can’t help but think…

What about me?  What about us?

Me – the person who is now affected forever with the diagnosis of congenital heart disease.

Us – the millions of people all over the world who have congenital heart disease/defects – the Heartland.

Congenital heart disease – CHD for short – affects 1 in every 100 babies.

It kills more children every year than all of childhood cancers combined.

Read that again…”back that @$$ up”…”put that thang down flip and reverse it…” whatever you gotta do…read that line again..

yes…the line where it kills more children every year han ALL childhood cancers combined.

Why don’t more people know about it?

Is it because CHD is the disease that doesn’t look like a disease?

Our kids are rosy cheeked, all smiles, some with chub…the picture of health.

Madison – 21 months, Hypoplastic Left heart Syndrome, dextrocardia, pulmonary atresia

Gabby – 5 y.o., Heterotaxy, Hypoplastic Left Heart Syndrome

Ava – 18 months, Tetralogy of Fallot, Pulmonary Atresia

Rowan – Hypoplastic Left Heart Syndrome, 12/12/11 – 6/11/12

Until you see their chest…marred with scars of the incision that spans from neck to navel, chest tube sites, some of us…feeding tube sites.

Maybe it’s the misconception that a surgery will “fix” their broken heart.

I’ll take some blame for that.  I flippantly call Evan’s heart broken.  It’s a cutesy way to describe it.

But, unlike most things that break…there is no repair for a CHD.

It’s not our (the Heartland) way of trying to gain sympathy – which one person alluded to.  We don’t want your sympathy.  We don’t need it.

There isn’t a cure.

There isn’t a fix.

This is a disease – even after multiple heart surgeries and interventions – that will NOT go away.

We don’t get a remission.

We don’t get a “the _______ (insert a disease here) is cured!”

Our children live with this. Forever.

And forever is relative.

We hope for a lifetime.  Yet we pray for just another day…

Because we know – the Heartland knows – eternity is truly just a heartbeat away.

Maybe no one knows about CHD because there isn’t a cure…so no fancy drugs can be made to fix them.  No big money can be pushed into a pharmaceutical company and the media talk about the new miracle drug that is curing the heart defects.

Money talks…and there isn’t much money in CHD.

BUT, there is a lot of us.

Us – being the mamas and the papas – the granddaddy’s and the grandmama’s – who desperately need our voices to be heard.

Not just for our children…but for those yet to be diagnosed.

We need awareness because CHD needs to slide off your tongue as easily as the word cancer.  It’s just as bad.  Our battles – different – but just as painful.

We need awareness because with the prevalence being so great – 1 in a 100 – people – there are too many babies going home and dying undiagnosed.

We need awareness because maybe someone will donate that dollar or that million into funding research for a new technological advancement that will give our children the chance of living into their 60s…

If you’re reading this, you may have just stumbled upon my blog right now or your are a faithful reader and prayer warrior for my boy.

That means…you know about CHD…please use your knowledge that I have hopefully given you in my words and pleas to help spread the truth about the disease that is killing the most innocent.

February 7 – 14th is Congenital Heart Disease Awareness Week.  It’s when you’ll hear stories from me, from my fellow heart mamas and papas…trying our darndest to raise awareness and spread the word on CHD.

But, tomorrow, on February 1st – the 1st day of the month of love – is “National Wear Red Day”.  National Wear Red Day is the day we – the Heartland – unite and ask those around us to unite with us in showing solidarity and support for those we love.  We ask that you wear red..the color of blood, the color of love….our color of hope….for someone you know that has been affected, is battling, or has lost their battle with Congenital Heart Disease.

Just like I’ll wear pink for those battling breast cancer, blue for my dear friends who are living with autism, light blue for those littles and their families fighting childhood cancer…I ask you to wear red.

It’s the day of the year I ask all of you to show others you know someone – my boy – OUR Evan – who has a heart that is more special than most.

It’s the week – Feb. 7 – 14th – that I hope to show you a look into our world as I and my heart families – share our stories of how CHD has affected our lives.

It’s the month – February – where I get to educate, empower, help change the face of our community with the important statistics of CHD.

It’s time.  The time is now.

To know.  To be empowered with knowledge that can save a child’s life.

To be the voice for me, for Evan, for all of “us” that need you to speak for us, with us…in HOPE.

 

Let’s celebrate.

The enormity of the day has fallen on my shoulders.

In my effort to “live in the present” and capture the greatness of 2013 for all that it is and will be…I have been enjoying every single second with my best girl and best boy.  I have relished in the party planning for Evan’s big day.

It is amazing how quickly time flies when at times during the past year it felt like it stopped multiple times…slowed down in agonizing seconds…minutes crawling along at snails pace.

I’ve been doing the normal birthday party prep.  Getting goody bags ready, planning games, buying candy…oodles and oodles of candy.

I’ve been celebrating my boy with every balloon purchase, toy give away buy, streamer bought.

Then…this week arrived.

I was called by his cardiologist to move up his heart ECHO (a sonogram of his heart) because of a scheduling issue.  It will be the first picture of his heart since his surgery…where we will see if what the surgeon did is working for my boy.

I was called by the craniofacial department to schedule his full cleft lip and palate repair.

I was sent texts, emails, Facebook messages by friends who can no longer make it to his birthday…the cold and flu season taking victim to each of my guests.  None of them wanting to put Evan at risk of getting sick.

The normal of the planning…the normal of our life….shattered once again.

It’s hard to live in the joy of the day when you are always reminded of the heart aches that surround your life.

I am trying to hold it together as much as possible.  Really just trying to be strong and joyful in the moment that is coming up.

My boy will be turning a year old in less than a week.  We will be singing happy birthday to my son in a couple of days….I’ll get to see him smash into his cake, wear his special party shirt, take loads of pictures..trying to capture the memories of the day.

I’m celebrating it in grand style…not just because of all he – we – have endured as a family this year.

I’m celebrating with such fan fare because less than half of babies with his heart condition make it to their first birthday.

I’m celebrating in such grandiose fashion because with his very special heart…only 85% make it to the next staged surgery…and of that 85%…only 65% make it to kindergarten.

I get this birthday…this milestone…I have been given this incredible gift of him just being here….today…

Every birthday I get for him…every year I get to plan a celebration of him being HERE….is a milestone that I promise to party hardy for not just him…but for others like him..who didn’t make it…for mothers like me…who didn’t get to buy the party hats, the noise makers…

But today…as I held Evan while he slept….all 20lbs of my chumba wumba laying on me…I was brought back to the purpose of his birthday as I felt his heart beat against mine.

With each “lub dub” of his heart and rise of his chest…I was reminded once again of the miracle that is before me.

The miracle of his beating heart…his life.

I don’t need to wait on January 22nd of every year to wish my son a happy birthday.  I don’t need an excuse to throw a party, buy a party hat, indulge in candy….because each day is a “happy birthday.”

Everyday.  Everyday I get to celebrate his birth…his life…..everyday that he is here and his heart still beats….I get to celebrate.

So…I’m inviting you…my blog readers, my Facebook prayer warriors, family and friends…to join me in celebration of not just Evan’s life…but life.

I’m inviting you on Tuesday, January 22, at 5:01 PM – when Evan took his first breath in this world – to stop and celebrate life…maybe your child’s, maybe your loved ones, maybe a friend…maybe your own.

Feel the life in your breath….the miracle of your beating heart.

And celebrate.

 

Present for 2013

Hello…nice to see you again.

I know….it’s been awhile since I last wrote.

The holidays were hectic here.  Both of the littles fell ill with bronchitis.

The littlest little is still dealing with cold symptoms – these heart babies just take a lot longer to recoup than the norm.

But, let’s be honest here.

I wrote a couple of blogs about Christmas and the New Year.

It all seemed so hollow.  Not really authentic.

I get that I don’t have to have mind blowing, soul searching, blogs all the time.

But, lately…I’ve needed to put thoughts down that I didn’t have the courage to do until now.

2012 was a doozy of a year.

It will forever be the year I gave the birth to my son…who endured 2 heart surgeries and a multitude of surgeries and procedures we’ll just file under “other.”

My boy will be a year old in two weeks.

I can’t believe it either.

If you’ve been a faithful reader…you’ve been with me since the beginning.  The moment my heart broke in a million pieces when I found out about Evan’s diagnosis.

You’ve been with me as a trudged along the last year…trying to figure out what the hell was going on with my life in this new normal in this place called the “Heartland.”

You’ve been with me.

But…me…I haven’t been.

I haven’t been present.  Truly in the moment of my life this entire year.

I fell into a deep depression.  I was asked by my regular doctor, my OB and even our pediatrician if I sought help or wanted medication.

Fearful of what it would do to me…fearful of the the possibility of it hindering my ability to take care of Evan…fearful…shameful…

Why couldn’t I handle it?  The pressure of having a medically needy child.  Who’s so freaking complex it scares a lot of people….myself and doctors included.

I’ve been a shadow of myself.  I often lived in that shadow.  Cowering in the darkness.  Refusing to see the light that was extended to me by loved ones, friends, God.

I kind of relished in it.  Being in that dark place….the place where I cried every.single.day.  The place where I would look up statistic after statistic after statistic of the hard reality that I will probably outlive my son.  The place that – let’s just call “there” – where I think about the most horrific thing that could happen to Evan.  I was “there” a lot.

At least in that dark place…the pit…I couldn’t fall any lower.  Maybe sitting in that pit and in the darkness would make the next moment of pain be a little less…feel a little less excruciating.

The past few weeks have been eye opening for me.

It started when Iz fell ill on Christmas day.  The day I prayed we would have together as a family of four…always praying for Evan to stay well…then my other little gets sick.

Then Evan fell ill…and suddenly I was on the phone with cardiologist, pediatricians…breathing treatments round the clock, oxygen monitoring round the clock…

And it was on day 3 of Evan’s illness…where he was very, very sick…that I wondered if we’d see it to his first birthday.

My mind went “there.”  I cried about in bed as I listened to his breathing.  I just kept thinking the worst.

Then…day four and five came around…and his smile returned.  His appetite came back.

His little babbling much more him.

He pulled through.  And I realized…as I dressed Iz on day 5 of that illness…when I put on her jeans that she had suddenly outgrown…when I kissed her face that had suddenly lost it’s toddler chub and turned into a pre-school kid…when I dressed Evan and saw that he was in 12-18 month onesies…when I looked at the calendar and met with my planning team for Evan’s party…

That an entire year had passed.

And I wasn’t present.

Truly in it.

I’ve gone through the motions of my life way too long. But, I guess that’s what happens when your entire being is focused on keeping your legacy alive…literally.  You go in autopilot…every once in awhile having to remind yourself to breathe, to eat, to sleep…sometimes just forcing another day because, hell, if your baby was fighting to live…you should, too.

2012 took my swagger.  It took the best of me. It took the joy from me.

I let it.

I let it take the best of who I am.  I let the pain be greater than the joy.  I let the fear be bigger than my faith.

I let life pass me by and failed to live my life.

Suddenly…my baby girl will be off to pre-school this year.  And next year….she won’t be “mine” anymore.  No more waking up when we want.  No more impromptu visits to the park on sunny days after breakfast.  No more coloring as “Cinderella” plays in the background after lunch.  No more tea parties before nap time.  She’ll be heading to school…like a big girl.

Suddenly…my boy who has battled the odds is cruising on furniture, stuffing his face with ps’ketti…who is becoming more and more like a toddler and a regular kid than the heart baby that lay in the ICU fragile…

If there’s one thing that I learned this past year….and the tragedy of Sandy Hook Elementary solidified it…is death doesn’t tell us when it’s ready for you.  It just kind of shows up.

So…I made the decision about a week ago….

I’m going to live in the present. Live in it.

No more wondering about what could have been if Evan was a normal baby, if I had chosen to do something different with his medical plan, if something I did during my pregnancy could have avoided all this heartache….letting the past strangle me from moving forward.

No more obsessing over what could happen…what may happen…letting the future petrify me from living.

There’s a fine line between arming yourself with knowledge…and obsessing over every statistic, every procedure…

Knowledge is power, yes it is.  But, I let knowledge be bigger than my faith.  I sucked in every piece of information…yet failed to pray about it.

I turned to the internet and medical journals…rather than turning to my Savior.

If I truly believe that God has control over it all…I need to stop second guessing every move He’s already made.

He’s armed me with the knowledge…He’s planted seeds in my heart for the next steps for Evan’s care which we’ll pursue when the time is right….I have to make the choice to believe it…trust it…

My boy, my sweet Evan….his path is already determined.  His steps are already laid out. His story will be beautiful and will change the hearts of many – this I’m sure of – no matter how many chapters it may contain….I pray it has chapters of first days of school, first loves, first heartbreaks…a chapter of “I do’s” and babies of his own…but if it doesn’t…it does not mean his life wasn’t amazing or fulfilling.

These things….are truth…absolute.

2012 is waterlogged from all my tears.  I spent more time on the internet searching for answers and researching plans to save my boy…than actual time with him.

I spent so much time trying to keep my boy alive and now that he’s here and thriving…I’m failing him by not living his life with him.

So…I decided to give myself and those that I love the best gift for 2013.

I’ve decided to give them the present.

2013….the year I jack my swagger back.