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The Sentence I No Longer Want to Hear About My Son With Special Needs

“He will be just fine.”

“Just work with him; he will be just fine. All babies grow at their own pace.”

“If you really get on your knees and pray, he will be just fine. Jesus can fix him.”

Friends. Family. Let’s be honest. He will not be just fine.

No matter what you say, he will never be just fine. Jesus does not “fix” what is not broken. I believe prayers are answered in His time, not ours.

My son, Noah Gabriel, was diagnosed at 14.3 weeks’ gestation with L1 syndrome (L1CAM syndrome). It includes hydrocephalus but is a whole lot more. On ultrasound everything was perfect except his thumbs.

Doctors did not ask if I wanted to terminate. They did not ask if I knew what continuing meant.

They said, “You have just over a week to terminate your pregnancy in North Carolina.”

Josh and I simultaneously said, “Nahhhh, that’s OK,” in our good ol’ Southern voices. Loud and proud.

So home we went, out into the world to answer the same questions over and over again to each and every family member. I never get tired of talking. But this boy has worn me out since we told everyone we were pregnant. The questions just never stop coming. And neither do the comments.

Family immediately started, “Just pray. I will pray. You hear me? He will be just fine.”

I never thought the words, “He will be just fine,” could be so toxic!

No one had answers to my real questions, and some friends and family didn’t listen to my knowledge. People we knew kept on chanting, “He will be just fine.”

Ultrasound after ultrasound, specialist after specialist. My regular OB appointments were pointless, and I eventually just started telling them whatever they wanted to hear. All the doctors believed, and tried convincing me, my pregnancy was pointless. It was easy to refuse every test generally expected. The tetanus/whooping cough vaccine was not pushed either. I asked for it. I got it.

I could feel my Little Bit every day. He sat low, oh so low. I was huge and pokey. Hydrocephalus would not just let him live in my womb and pass the very second he hit oxygen outside the womb. Right?

Pre-op, the surgeon came in and said there was no hope of him staying with me postpartum. The OB said he would not cry. We got phone calls while we waited, and a few family members were in the waiting room. “Just pray, he will be just fine,” they said again.

They cut me. He cried.

I touched him, and he left for NICU.

Thirteen hours later, I saw him. Noah was the most critical baby in the NICU that night. “The CT scan shows no proof of brain activity.”

“What does that mean?”

“It appears your son has hydroancephaly. He has a healthy brain stem that is keeping him breathing and crying. But, he will not do more than that. Brains cannot grow from nothing.”

I argued, “That is not what he has. Hydroancephaly is not a marker for L1.”

Later that night, a nurse and a neonatologist came up and told us Noah had seized. Possibly, Noah did not have hydroancephaly. The neonatologist’s cousin had hydrocephalus and was in med school. They said Noah “would be just fine.”

Noah is now 9 months old. At least once a week, someone still tells us, “Noah will be just fine.”

I want to be honest with you. You are aggravating the hell out of me! Stop saying that! Pick a different phrase. Be positive in a different way. If you can’t think of a different way, say nothing.

I get it. Kids develop differently. Its stressful when your 6-month-old can’t sit unassisted, your 11-month-old is not walking, your 2-year-old says one word at a time, your 3-year-old won’t poop on the potty and your 6-year-old won’t add apples.

But L1CAM syndrome is not like that. It is not understood. Many doctors have never heard of it. It’s not just like your baby who missed a milestone. Realistically, my child has special needs.

Instead of fixing him, love him.

Instead of praying for different, pray for peace.

Instead of wanting him to be just fine, want fantastic miracles!

No, my child will not be just fine. He is, and will remain, just amazing.

Follow this journey on Freshly Messy.

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