One year ago…

One year ago today, I was excitedly getting ready for our 20 week anatomy ultrasound.

I was told it was a long ultrasound where they would look at everything closely, measure baby’s bones, and head, and organs, and make sure everything looked good. I heard we were getting to see our baby, and get new pictures! We were doing a gender reveal that weekend, so I was anxious to get a good picture to bring. Those were my thoughts walking in, “I need a good picture I can frame and bring with us Sunday.”

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Getting ready to go.. My bump was getting so big!

Shaun left work a bit early to meet me at the doctor’s office, we were both jittery with nerves to see our little “Simba”. (Even though we didn’t know the gender yet, I was sure the majority of my pregnancy that the baby was a boy, and took to calling him Simba.)

I didn’t love the way the ultrasound was going. I thought the woman was being rude; she was quiet, kept moving around really fast, and said she was not going to be able to get a great picture of his face for us. I walked out of the ultrasound room a little let down, and frustrated. I wanted a re-do, that wasn’t at all what I had hoped it would be…

Then we were called back to a patient room, and my favorite doctor walked in. She was newly pregnant and we shared some back and forth about gender, and names, and dreaded nicknames. Then she got quiet. She shifted a bit and I felt my stomach knot. I get this feeling in my head when my nerves pick up, a tingling warm feeling that always immediately makes my eyes water and ears buzz. It’s like my own internal alarm bell… something isn’t right. Instinctually I began to hold my belly, protecting my little Simba from what was about to come.

She very calmly and sweetly informed us that everything looked good on his ultrasound, head and organ sizes are normal, they had a difficult time getting some necessary measurements of the heart just due to his positioning, but that right now, they were seeing what they thought might indicate a cleft lip.

I looked to Shaun who was as confused as I have ever seen him. We locked eyes and then back to her… He said “What the hell is that?” I knew what it was, I had seen the fund raising posters and tv commercials. I had, in my ignorance, believed it was a problem that affected third world countries… How would my baby have this?

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We received this sonogram image the next day, where they were able to confirm the cleft.

Everything from this evening, around 7pm and on has changed my life. It has changed my perspective, and my goals, it has changed how I see myself and others. It has made me stronger, and more cautious; it has made me more empathetic, and yet less tolerant. Less tolerant for drama, and BS, less tolerant for negativity.

In a support group I am in, moms talk with perspective to expecting moms and often say “I wish I worried less when I was pregnant, as soon as your baby comes, you’ll love them so much, and everything will be okay.” I completely and whole heartily GET that. I understand why they say it, and I even get why that’s a helpful, reassuring thing to be told. But I want to say something different:

To moms expecting a baby you have just learned won’t be “perfect”, who didn’t walk out of their anatomy scan with an “all clear” and a beautiful picture to frame for their families. To parents whose babies are born with surprise concerns and require medical intervention, and moms whose babies come early and spend time fighting for their life: WORRYING is part of the process. Grief and sadness, and feeling let down by God, or the universe is part of the process.

If I had walked out of that appointment and said “No worries here, I will love my son, so it will all be okay.” I wouldn’t have spent the next 3 months researching, and understanding this birth defect. I wouldn’t have reached out to a therapist to digest my emotions, and work on coping mechanisms. I might not have gone back to church, where taking the chance each week to pray for him and for me, and for strength to preserve gave me the hope, and acceptance, and understanding I was searching for. I wouldn’t have been online googling special bottles and watching youtube videos of feeding and taping. I wouldn’t have found and read medical research about the best pre and post surgical methods so I could ask all the important questions at our doctor appointments.

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Patrick went right to NICU, he was so big, and juicy, and yes PERFECT!

Worrying and stressing over what our little one’s life will be like, is what we do no matter what our children’s medical, emotional, and physical life is like. Worrying is part of the process. It gives us the push to know and understand and learn so we can advocate for them.

Grieving was one of the most important things I did initially. I spent time allowing myself to feel sad, and let down, and disappointed. I know some people might find that shameful to admit, but I think it’s important to stand up and say this: No one wants their kids to be “different”. No one wants their kids to experience pain, and struggle. When you learn your child might experience some of those things, you grieve. You had a picture in your head of how this little one might grow up, and the things you want for them in their life. That picture starts to change, and you have to walk in that path.

I know so many moms and parents whose children have extended stays in NICU and they have to leave the hospital without their baby. Parents who split time between children at home, and a baby in the hospital, parents who lose one baby, and pull themselves together to continue fighting to save another. None of this is how we pictured it to be, and it’s UNFAIR. It’s hard, and it’s cruel. Take a minute, and read that again. It is UNFAIR, and CRUEL, and HARD. But it’s happening, and now as parents we have to continue.

So here’s what I did.

I wouldn’t let myself compare. Telling yourself that “it could be worse” isn’t going to help you manage the emotions you have inside you, only make you feel guilty for having them. Yes, someone else might have it worse, but I bet you went on Facebook today and felt like 100 people had what you wish you could have. Manage the emotions rather than push them away.

I found support. I joined a Facebook group of parents whose children are cleft affected and we can share, support, and love on each other. We live in different areas, and experience some different struggles, but we understand the fight and the struggles and we are there for each other.

I lean on people around me, who I trust. I have a core group of people I know I can vent to, and who will love, and understand me even when I don’t want to sound upbeat and positive. My husband, my mom and my siblings should get medals for dealing with me this year… it’s been a struggle but I am so grateful every day for their love and their support, and for dealing with me!

I let myself cry, and I let myself feel whatever it is. Some days I want to feel bad for myself, and I want to feel bad for Patrick, and I LET MYSELF! But I don’t let myself stay there. I read motivational books, and follow motivational speakers, and I keep a record of things I have to be grateful for. I am allowed to feel these things I am going to keep feeling them, but not forever.

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Reading this book right now about Growth, this quote really hit me.

I rely on my faith. It’s a fall back for me, something I grew up with and something that feels like a warm blanket on a cold day. I actually pray. I know we all say “I’m praying for you.” But I really am.  I pray for myself, and our family, I pray for other moms and their families regularly, and I find comfort in it.

And finally, I do this… I write, it is something I have always loved, and that I now feel compelled, almost obligated to do. To write my feelings and my experiences, and to share this journey.

If you’re following this journey with me, thank you for your support. If you are a mom or a parent fighting through your own journey, you’re not alone. I am with you.

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Published by mamahouli

I'm a new mom of a beautiful baby boy, living in Long Island, NY. I was sure before I became pregnant that I knew exactly what this "mom life" would be like. I knew nothing. I'm ready to get real about what it's like being a mom, having a child born with a cleft lip and palate, and just trying to figure it all out.

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