A Reminder to Parents: We're Doing the Best We Can

I know my parenting style is not like yours.

I know you’ve raised three children and never once did you do that. I hear you, I really do, and it’s so nice that you’ve shared with me what worked for you, but honestly I don’t have time to care.

I feed my 5-year-old almost every meal. I take the food off her plate to her mouth. Yes, we often sit in front of the TV when she eats. Yes, she can physically feed herself. She can lift her own fork and lift her own cup, but also she can’t. I fought for years to get her to eat. We almost used a feeding tube. If the food is too messy and gets on her hands or if she drops it on her lap or if something just doesn’t look right, she won’t eat it. It could turn into a meltdown. Everything  has to be just right.

So I take the food from her plate and put it to her lips so all she has to focus on is chewing, which was hard enough for her to do initially. I take away and eliminate any distractions I can so she’ll eat. It’s just more important that she eats. But I see you. I can feel your judgment as if it’s its own person at the table.

We’re doing the best we can.

I see you watching me carry my daughter from the car across the parking lot to the store’s door. You’re thinking she’s too old to be carried. That child should walk. I agree, she’s getting heavier and it’s not the ideal thing to do, but her cerebral palsy is tightening up her muscles and cramping up her joints. She wants to walk too, but sometimes she just can’t.

So I carry her — across the parking lot from my car to the store’s door. I will carry my child anywhere if it spares her a little pain throughout her day. I’d put her on my back and shelter her from anything. I feel your eyes staring at me with every step I take.

We’re doing the best we can.

Yes, we co-sleep. Yes, she has her own room with her own pillows and blankets. It’s the cutest little room, really; everything in it describes her. When the sun goes down, her anxiety is real. This isn’t a little tantrum or her own strategic plan. Maybe one day she’ll learn how to better handle the anxiety she holds, but for now I worry about her. I keep her close. She has sleep apnea and has had seizures in her sleep, so I have anxiety at night too. The thought of her struggling to breath in her own room all alone  is not an option for me. Every kiss goodnight I pray she doesn’t stop breathing in her sleep. I know you think this must take a toll on my marriage, but it’s funny how it doesn’t, not when we both want our daughter to be safe.

We’re doing the best we can.

When your kids come to our house wanting my daughter to come out and play I know you get angry when she doesn’t. I know their disappointed faces are frustrating to you. You want your kids happy too. Your children are lovely, and I would love for them to all be friends one day. But my daughter is struggling. She’s learning how to connect with other kids. She spends a lot of time on this topic in therapy. She’s just not ready yet; she just doesn’t want to play. I hope your children will wait for her and accept her when she’s ready.

I see how you don’t wave hello to me anymore as we go for a walk past your house. I see how quick you are to avoid eye contact when we see you at the store. You might think I’m a snob or just stuck in my ways.

We’re doing the best we can.

You’ve stopped asking to babysit because of the never ending “no” that slips from my mouth. It’s not that I don’t want a break or time to myself. It’s not that I don’t want to share her with you or don’t trust you. The harsh reality is she doesn’t like to be left. She knows you don’t understand her when she speaks. She has to hold herself together every time I leave. Some people’s emotions unravel at a faster speed. Are you prepared to handle a seizure? Are you able to understand her needs? Do you know what to do if her lax joints cause a dislocation? Do you know the foods that don’t agree with her or how sensitive she can be? I know it’s a lot of information, so I take her every where with me. I know not everyone understands this.

Each day we decide to stay brave, to remain confident in our choices. If you see us or a family like ours, please always remember: we’re all just doing the best we can.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.