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.

Comments

  1. As a 30 year old CHD survivor … I need you to both to know you are in my prayers … both of you are beautiful Moms!!