Milestones can bring a lot of emotions for parents that have gone through trauma with their babies. For me, Emma’s birthday is particularly difficult. Her life is full of celebrations and overcoming obstacles, but when I think back to the months leading up to her birth, the day we welcomed her into this world, and the time she spent in the NICU, the memories overwhelm me. Of course I was overjoyed to add another precious girl to our family, but I had many moments that the fear of losing her just crippled me. This journey with Emma has transformed my life in so many ways. I feel led to continue to be open and share my story, in hopes that it will bring hope and encouragement to anyone that may walk such a difficult road. There are thousands of people fighting for their child's life at this very moment. Please know that you don’t have to walk alone.
1. I remember everything.
There are
quite a few days along this journey that are unforgettable. Some of the days
were very traumatic for any momma to experience when their child’s life is at stake. This resulted in PTSD for me, which is pretty common for NICU mommies. I
will never forget the day of Emma’s hydrops diagnosis and all the crying and
confusion that followed. Coming to terms with the fact that we may never get to
meet our daughter (alive) is something no parent should ever have to face. I
will never forget the day I had fetal surgery. This turned out to be a
life-saver. Including the moment the doctor performing the surgery told Justin "I was a millimeter away from her heart, and if I would've pierced her heart, she would have died instantly." Praise God for steady hands. Emma and I both still have our scars from the surgery, and we refer
to them our “battle scars”. I will never forget the day Emma was born, the
joyous moment I heard her first cry, and the heartbreak that followed because she
was immediately taken to the NICU. I wasn’t allowed to visit her because I just
had major surgery (minor detail) and needed to recover. I will never forget
laying in the recovery room alone listening to the new mom on the other side of
the curtain nurse her newborn baby for the first time while my arms were empty
and tears of jealousy ran down my cheeks. I will never forget the first time I held
Emma at 5 days old and how tiny and fragile she seemed. I will never forget
walking out of the hospital after I had been discharged. I had to leave my
daughter there for strangers to care for her. I couldn’t stop crying which resulted
in unbelievable pain from my C-section that I could barely walk. It
was excruciating, and probably the worst moment of my entire life. I knew Emma
needed to be in the NICU, but it simply wasn’t fair that I had to leave her. I also remember walking
out of the hospital at the same time as another couple who was leaving with
their new baby. My heart was breaking, and their hearts were full. Watching
them was like a knife through my heart. I will never forget the day Emma almost
died in the NICU. She had group B strep, a blood infection, and the doctors
believed that because she was so sick, she may have developed spinal
meningitis. Justin was working, and I couldn’t figure out why Emma’s doctor
kept asking me if Justin could come to the hospital or if there was anyone else
I could call, because I shouldn’t be alone. Then he told me the news. If Emma
has meningitis, she most likely won’t survive. If she does survive, she will be
severely handicapped for the rest of her life. My world came crashing down.
This was it. The life-changer. I called Justin and he raced to the hospital. My
mom brought Laney too, and we sat in the Ronald McDonald family room and prayed
like we’ve never prayed before. After the doctor was finished with the spinal
tap, he came and told us that Emma’s spinal fluid was clear and he was
confident there was no meningitis. I will never forget that moment either. I’m
pretty sure I jumped up and hugged him. We praised God for His continued
faithfulness and healing hand over our girl. I will never forget the day we
brought Emma home. Justin and I both cried when we left the hospital as a
family of four. Life could finally begin again for our family.
2. I changed. A lot.
I recently
went through counseling to help sort out the emotions I still feel (3 years
later) when I reflect on Emma’s journey. I found an amazing therapist that
specializes in reproductive trauma, which is anything in the pregnancy or birth
process that didn’t go as planned. Talking to someone who understood and has
been through similar traumas was life-changing for me. She validated my
feelings, she explained why I have these feelings, and she helped me get
started on the road to becoming myself again. I had been diagnosed with
depression and anxiety a few months after bringing Emma home, but the medicine
only seemed to numb the emotions, and I never found anything that really helped. I felt like I was living in a fog. I didn’t want to bury feelings, I wanted
to dig them up, sort through them, and move forward. Counseling was a painful
process that opened wounds and raised my anxiety, but it was worth it to make the step towards healing. I will probably always cry when I think about everything
Emma has been through. Not always tears of sadness, but tears of pride, joy,
and amazement at how God healed her. Many people described me as strong during
this journey with Emma, though I never truly felt strong. It was God’s strength
and power shining through. I used to feel strong in different ways; confidence,
decisive, bold, accomplished, etc., but this is a different definition of
strength. Now, I feel strong when I embrace my weaknesses and imperfections. I
feel strong when I realize I don’t need to be a perfect wife, mom, or friend
and I can call on God for guidance. I feel strong when my best friend tells me
I don’t have to go through this alone, and that she is here for me in whatever
I need. I feel strong when my husband tells me that he loves me and that he
supports me in this journey to be myself again. One thing I do believe is that
it takes a very strong person to seek help. I truly believe counseling is great
for anybody, and it is probably the best advice I can give, along with prayer.
3. I stopped caring.
My
therapist told me she believed I went into shock after Emma’s diagnosis, and I
stopped caring for myself and put all of my energy into her. Navigating through
my new world of depression, anxiety, and PTSD has been nothing short of challenging.
I didn’t understand mental illness before my own diagnosis, and I was
embarrassed to talk about it because I thought it was something I should be
able to control. I despised the fact that my thoughts, words, and actions
weren’t always in my control, and feared that if I accepted this then I would
be accused of using it as a crutch. It took me a while to tell anybody other
than my husband about my mental illness, but once I realized it was nothing to
be ashamed of, I started opening up about it. We’re all imperfect, that’s why
we need Jesus. There is so much beauty in imperfections. My imperfections tell
a story of doubt, fear, grace, mercy, and hope. I realized there was
nothing appealing about me suffering alone on the inside while trying to appear
“normal” to everyone around me. I now understand that I am loved for who I am
inside. One piece of advice for those that have loved ones suffering from
mental illness; give them grace. God gives us all grace, especially when we don’t
deserve it. Sometimes we just have bad days. We are our own
worst critics. We may not deserve it, but we need grace. I am grateful for the
circle of people that love me unconditionally and have given me undeserved
grace through this journey. Not only do I hope to receive grace, I try to give
it as well. One of my most favorite “takeaways” from our church is to
believe the best in others. When there is a gap between what I expected and
what I experienced, I will believe the best. If I need to fill that gap, I will
come to you and ask for truth. Can we all try this a little more? Grace is big. It can change the world. Little things don't matter. Once my child’s life was at stake, I saw the bigger picture. I don’t care about petty things. I don’t have
time for it. There are more important things in life than getting offended
about meaningless drama. My daughter almost died, y’all. That’s big. But she’s
alive. God saved her. That’s bigger. This journey gave me a new outlook on
life. I value my relationships so much more. More than letting little things
offend me. More than actually believing someone close to me would intentionally do
something to hurt me. More than getting my feelings hurt, for example, when
someone talks about how happy they are that their baby is healthy. Does it
sting a little? Absolutely. But I believe more than anything that it isn’t
meant to be hurtful. I believe the best. People are allowed to be happy about
their healthy babies, and I’m allowed to be sad about the times that mine
wasn’t healthy. I would never wish the pain that I experienced on any parent. I
hate that I had to watch my baby suffer. I hate it. If I could’ve taken her
place I would have in a heartbeat. Sound familiar? God willingly sacrificed his
own son, his child, to save us. There is so much beauty in that. I can’t
comprehend the love God has for us to do such a thing. I begged and pleaded
with God to save my child, all while knowing that he sacrificed His own. He
loves us, so very much. We simply don’t deserve it. Can we all try to love each
other more anyway? Even when I feel unlovable, I know the people in my inner
circle will love me, believe the best in me, and come to me when there is confusion.
I love that my relationships are thriving because of this concept. I love that
my husband has seen all of my ugly moments and still loves me, believes the
best in me, and encourages me to do the same for others when I have doubts.
It’s a beautiful thing, y’all, and the world could use a little more of it.
4. I step out of my comfort zone.
If you know
me well enough, you know I’m pretty reserved. I am pretty shy, and not great at
reaching out to others. That changed. I have found that every time God wants to
use my story, it’s way out of my comfort zone. But that’s okay. It’s all for
His glory. Every moment, good or bad, He was present. In my darkest moments, He
was the only one there. I wish somebody who had been through a similar experience
had reached out to me to tell me what I was feeling was normal, and that I didn’t
have to be alone. But there was nobody there. Nobody knew how much I was
struggling. Nobody knew that I cried every moment I was alone without somebody
there to distract me. Nobody knew. I suffered silently for 3 years. Isolation
is pretty common for NICU mommies. Unfortunately, we just don’t know how to
navigate through the hurricane of emotions thrown our way, so we hold it in,
and try to focus on our babies. I wish I would’ve had someone, but I didn’t.
Thankfully, after counseling, I realized that one of my purposes of going
through this journey with Emma is to be that person to someone else. I want to
be there to walk alongside another mommy who is struggling just like I did. I want
everybody to know that miracles still exist. I don’t want anybody to feel
alone. I want everybody to have hope. After all, why would we even keep
fighting if there is no hope? I am part of a hydrops support group on Facebook,
and I love hearing stories and sharing ours to bring a little hope. These
families are in the middle of their storm. Most of us know somebody going
through a storm. Lean into them, don’t turn away. You don’t need to have all
the right words, just be present.
5. I’m grateful.
Although memories full of fear seem to take over when I think about the 13 months of my life
spent worrying about Emma’s future, I can push the fear aside and find the joy
that my oldest daughter Laney brought to me. Every moment I spent with her was one less moment
that I spent in my bed crying alone. She was only 9 months old when Emma was
diagnosed with hydrops, so of course she didn’t understand. It didn’t matter. All she knew was that my growing belly was named Emma and she loved
hugging and talking to her little sister. She didn’t need to know all the scary
things; she just wanted to love on her sister. Laney was an amazing baby. She
was always happy, never cried, easy to care for, and could make me smile and
laugh at any given moment. She is the definition of joy. Laney truly saved me
through the most difficult days. I am so grateful for her. I am so grateful for
Emma. I am so grateful for Justin and how much our marriage has grown through
this journey. I am grateful for my inner circle. I am grateful for this life I
get to live. I seriously love my life. I am grateful for God’s constant love
and presence in my life.
To those of you that have walked alongside me, prayed for
our family, served our family, and loved us through the hard times, thank you.
You have blessed my life more than I could ever express. My heart is so full
because of you. Thank you for being a part of our story.
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