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This is the most difficult time of the year for me. I avoid my Facebook memories. I try not to think about where we were and focus only on the here-and-now. Yet, each year I sink a little deeper for a few weeks. Depression is very physical for me. I am exhausted. My body aches. I have trouble sleeping.
Four years have passed since what was likely the most difficult time of our lives. Our two-year-old, who had feeding challenges since birth, essentially stopped eating. He became lethargic. We took him to the Children’s Hospital of Wisconsin, where he stayed for a few days as an inpatient. We had to hand off our three-month-old daughter to family members while we stayed in the hospital with our two-year-old son. We had to help nurses hold him down as he writhed and screamed, so they could insert a feeding tube into his nose and down to his stomach. To be honest, it was the worst moment of my life and I wish they’d just called on more staff to do it.
Our son had fallen off the bottom of the charts and we were faced with the reality that, without that intervention, we may not have him with us today. The next few months were a blur of hospital visits, doctor appointments, cleaning up vomit from the formula he couldn’t handle, fighting and advocating for further testing to get to the root of his feeding issues, and surviving purely on adrenaline. And Zoloft (let’s be real).
There was the intense feeling of guilt that my infant was deprived of the attention she needed from me, because I was consumed with my son’s needs.
There was fear and anxiety and exhaustion and thankfulness for family who stepped in to help.
The truth is that special kids aren’t given to special parents. They are given to regular people who don’t know what the hell they’re doing most of the time, but have no choice except to navigate the storm.
Now that our lives are less about life and death and more about behavioral management and routine g-tube feedings, I have time to think about these things. In a strange way, I functioned better when I didn’t have time to think. That’s the only positive side of survival mode. You continue in forward motion, you act, and you don’t have time to get into your own head.
It’s hard for me to let myself feel, but I know the only way to the other side is to roll up my sleeves and dig through it. I am a work in progress, but this year I will give myself a little grace, hug my kids tight, and try to dwell on how far we’ve come instead of the nightmare that happened four years ago.
Side note: I knew there was something more to C’s feeding challenges and I should have continued to push harder so that it didn’t get to the point of an emergency intervention. I’ve never doubted my gut feelings since then, and they have never failed me. Always listen to yourself. And, always give yourself grace.