Ben and I have been joking about leaving our kids on the curb this week. We keep saying that if someone could just come pick them up for a couple of weeks, we would be able to pull ourselves back together. Jack likes to get up early. Ellie likes to stay up late. Jack is potty training. He is becoming more independent and therefore more defiant. Ellie has a perpetual cold. She cannot quit choking when she starts coughing and that means a lot of throwing up. There are always toys on the floor and a mountain of laundry. Momma and Daddy are tired, both with the day-to-day grind and from months of chaos.

Jack telling stories on the porch.

I do think a lot about what it would be like to just stop. I think about how to give up and waive the white flag. Ellie has broken me. She has pushed me over the edge. Having her around keeps my anxiety level at red alert level. Every moment of every day, I worry about her: Is she choking or just coughing? Will now be when her heart will stop and she will be gone? Is she keeping enough of her medicine down? Can I hear her breathing in her car seat? Is she getting sick? Don’t even get me started on the future. I had a meltdown the other day because she and I were watching “Say Yes to the Dress” on tv. Will she want to get married?

Very often, more often than I am comfortable admitting, I ask myself, “What is the point?” Some days I feel like I am just spinning my wheels here taking care of this child who is draining every bit of light out of me. I worry that I am not doing right by Jack or Ben or even myself. I can’t find peace.

I owe a lot to the 20-something man in Ulta who introduced me to my new under eye concealer over a year ago. I explained to him that I wasn’t getting a lot of rest because of the pregnancy and needed something to hide the dark circles under my eyes. Luckily what he sold me can help hide the tell-tale signs of crying all night or a week of two-hours-of-sleep nights so I can go out in to the world, for the most part, composed and together like a normal person.

Normal. Who IS this normal person I aspire to be? What even is normal? Who do I know that is a normal person? I can’t think of anyone. Since Ellie was born, more and more people feel compelled to tell me about their sadness. I don’t know if it is the vulnerability I seem to wear now or if people are just trying to make me feel better by telling me a story. Either way, I am happy to listen. I am learning that there is a lot more sadness and stress out there than most people ever let on. I am always surprised to learn about people who I thought were normal and had everything together. They, too, have obstacles that they don’t necessarily have a solution for either.  

Standing with daddy

Is that the normal? Is hiding our sadness, anger, disappointment, fear and our most vulnerable selves in order to appear together what normal is? I remember when I was a kid, my mom would tell us to “make it look like a magazine” when we were cleaning our rooms. Are we hiding what we don’t want others to see under the bed while we try to appear camera ready? I’m just too tired for that.

As an outsider, one of the easiest things to do is to offer suggestions to help. I get a lot of suggestions on help. Meditation? Check. Talk to God? Check. Exercise? Check. Ice cream? Check. Yoga? Check. Drink plenty of fluids? Check. Journal? Check. All of these things are nice, but they aren’t working for me like I had hoped. There is no magical overnight solution that is going to take all of this anxiety away.

I read an article about taking care of caregivers. One of the points was to remind the caregiver that there would be an end. This may be true when you are talking about taking care of a critically ill patient or an older person, but a parent’s job never ends. At least, sure I hope not. I mean, I do hope that one night I am able to go to sleep without worrying about Ellie choking, but I am thankful that I have her to worry about.

I am cautious about bringing up something like PTSD or depression because I believe it is easy to throw around these terms in common vernacular without giving them the respect they deserve. However, I do wonder how much of what parents of children with disabilities or life-threating medical conditions deal with once they get home from the hospital can be diagnosed. Regardless of the situation, the moment you are told that your vision of the way you thought your life was going to be isn’t going to happen, it is traumatic and overwhelming.

Pigtails at the UA Little Rock basketball game

Finding out that Ellie had Down syndrome and congenital heart defects was devastating for me. The life I wanted went up in smoke. I grieved and am still grieving for a child that didn’t happen. The mind is an amazing thing. I can be hopeful and excited for a child that I am simultaneously grieving. She has brought so much to my life in just a short amount of time, but has also taken so much away. I am still working to get my arms around it.   

Spending all of those nights and days in the hospital is hard to explain. A children’s hospital is not a fun place. For some reason before our extended stay, every time I drove by it on the interstate I used to think about all of the kids having fun in there. I had pictures of kids with bandages and ivs playing with football players and famous musicians in my head.

Ellie at school

My first night there was awful. I had been there during the day visiting Ellie for weeks, but had not yet been able to stay the night. It is impossible to ignore the sadness at night. The lights dim and things get quieter. There is not as much activity in the hallway and the visitors are all gone. What you are left with is children who don’t want to be there. They shouldn’t be. No one wants these kids to be there.

My baby was too little to know the difference at the time. She didn’t know any better because she had never spent a night at home before. Easily, I could hear Ellie’s neighbors and other children down the hall crying about shots, medicines, dressing changes and missing home. One of her neighbors was about her age, just a newborn, and never had any visitors. That baby would cry in his room all alone for most of the night.  

There is an occasional alarm that goes off in the hallway that is more important than others. The first time I heard it, I stopped what I was doing and watched curiously as all of the nurses and staff ran through the halls towards another room. It is not a beeping alarm like your nurse call button, rather it is a low, pulsing tone that is designed to cut through any of the typical hospital noise. This is the code alarm.

As a parent, when you hear this alarm, you immediately put yourselves in the shoes of the parent in the room with the code. Watching the faces of the doctors and nurses as they literally drop what they are doing with your child to go save another child’s life is very scary and humbling. I was in the bathroom one day when the code alarm went off. Because of the way the sound is designed to travel, I couldn’t tell if it was in Ellie’s room or someone else’s. Part of me wanted to open the door to see if she was in trouble but the other part of me wanted to hide until it was over. I still wake up at night to this alarm. I have to remind myself that it is only a dream.  

It seems like Ben and I are constantly keeping this mental score card of who got more time to themselves this week but we both feel like we got the short end of the stick. Neither of us have anything left at the end of the day to give to the other. I am carrying around so much that I don’t have any room left to listen to his burdens. He feels the same way.  My therapist says, “You are starving. When you are starving, you don’t want to share your cheeseburger with your husband. You want to eat the cheeseburger yourself. You want to tell him ‘Go find your own cheeseburger.’” Truth.  

Jack at his first movie in the theater.

I think that you don’t know what you don’t know until you know. Unless you know that there is no such thing as normal, you keep pushing towards some pie-in-the-sky ideal and there is no end to the struggle. No one is perfect. No one is completely put together. Nothing is ever really what it seems from the street view. No one knows that until they change their perspective.  

In order to find some sanity and level of peace in my life, I have to remind myself to slow down. Work less hours. Play backgammon with Ben after the kids go to bed instead of folding laundry. Take Jack to the park instead of the grocery store. Cuddle with Ellie when all she wants to do is be held instead of washing dishes. Focus on your family and what they need in this moment. “Don’t sweat the small stuff,” as my Aunt Connie would say. It’s all small stuff that gets me out of sorts. I’ve got all of the big things I need.

2 Comments Add yours

  1. Sonya Creighton says:

    You are amazing! I love you Heather


  2. Ron Spellman says:

    It will get easier as she gets older. Until then do what you said about the laundry and the dishes, load Ben and both kids in the car and go get an ice cream. Watch the kids with ice cream running down their cheeks and enjoy the moment. . If snapping my fingers would help, the noise would be deafening. Take care. Ron a friend of Mary Ann Jennings


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s