First, let me begin this blog with the most wonderful news. Caleb has settled into his new home like he’s lived there forever. He has three male roommates his age who adore him. They watch movies, play basketball in the front yard and share meals. The staff of this home is loving, protective, knowledgeable and they treat all of the residents like family. This is why I’ve been so quiet. Every time I see him or talk to him on the phone he is happy and excited. Any writer will tell you those stories are very boring to read.
Then COVID-19 hit and though the first week of quarantine has definitely been challenging, it hasn’t hit me like it has others. I’ve devoted a lot of thought to this and realized that it’s because this is not the first time I personally have lived through various types of quarantines, which so many 22Q parents will recognize, to the point where they may feel they are looking in a mirror.
I will share some helpful tips in a minute, but the most important thing I will share is that you will get through this. I’ve been here, in this pit of despair and because I’ve climbed out of it for now, I can extend a hand and help you.
This quarantine will be difficult and some days will drain every single ounce of your patience, energy and humor. Some days will be so dark, but always remember, no matter how dark it is, the sun is up there, beaming behind clouds, ready and waiting to light your life right back up.
In 1995 when I was four months’ pregnant with my daughter Sophie, I began having contractions. Terrified, my mom immediately took me to my doctor, who measured the contractions and put me on complete bed rest. For five months. I was allowed one shower a day and to make my lunch and a simple dinner and that was it. Leaving home was out of the question.
My mother, who drops everything when her kids need her, began driving an hour and a half once a week to bring me lunch and to clean my two-bedroom apartment. She told me she knew this was so hard, but that every day I should make my bed, shower, put on makeup, fix my hair and put on one of my super cute maternity outfits, then go to the couch. This was some of the best advice I have ever received. It kept me from falling into depression.
Sophie made it to her due date, as did her brother Caleb 17 months later. As you know, Caleb was not healthy. After his open-heart surgery at four days old, I stayed in a green plastic wanna-be recliner for three weeks, holding him the entire time. My heart broke for this sweet baby whose entrance into the world was met with unfathomable pain. During that time, I showered twice a week and ate one meal a day, dashing to McDonald’s for a Big Mac Meal at lunch when he was napping. I have no idea how my body made the milk to feed him, but it did.
When I could finally bring Caleb home, the difference in me after those births was shocking. After Sophie, my hair was shiny and long, I had curvy baby weight that I cared nothing about and my skin shone with health. After Caleb, I was so thin that my hip bones stuck out. I had lost all muscle tone and looked like someone with a major illness. My hair was thin and lackluster and my skin dull from not having been washed properly in a long time. I was 27 but looked so old and frail.
If I thought my days of quarantine were over, reality was waiting at home to smack me in the face. Not 24 hours after we got home, Caleb contracted a 105 degree fever. I called the hospital where we had been, and they said not to let anyone in the house. They reminded me that Caleb is missing his thymus, one third of a healthy immune system, and that he would be most vulnerable to viruses–which we are all now learning are notoriously difficult to treat. They told me to watch him closely and to treat the fever, which I did.
Then came the hard part. Sweet neighbors and friends kept stopping by to bring gifts. I had to talk to them through the door, telling them thank you but can you please leave the gift outside? Family wanted to visit but I had to tell them no. I eventually put newspaper over the sidelights by the front door, a sort of warning to not come close.
I treated our home the way many places are being treated right now. I used Clorox wipes to clean every doorknob, cabinet, toilet and faucet handle several times a day. I washed my hands, Sophie’s hands and Caleb’s hands multiple times a day. Pacifiers were sterilized daily. I was still nursing Caleb so thank God I didn’t have to sterilize bottles. We stayed at home, always. I went to the grocery store at night when my ex-husband was home, so Caleb wouldn’t be exposed to germs there.
Even with all of those precautions, Caleb was seriously ill, with a 105 degree fever for two weeks of every month. For two years. Not only were we isolated from society and not allowed to leave the house, there was the constant undertow of worry that Caleb could die. Sophie couldn’t have friends over or go to their homes. We briefly joined a playgroup but there were two moms who brought sick babies because “I just had to get out of the house.” That led to a full month of fevers for Caleb.
After that two-year quarantine, Caleb entered a preschool for kids with developmental delays like him. He loved it, but people often sent their sick children, so he missed at least a week of school every month. This went on until he was in high school.
When Caleb was 10 years old, he broke his femur at recess, trying to be Buzz Lightyear. I wasn’t there, but I am haunted by the image of this cheerful little boy yelling, “To infinity and beyond,” jumping, and landing with a horrible snap. This break required two surgeries and six months of home recovery. At first he was in so much pain he didn’t mind being home, then around month four he started becoming frustrated and angry. I was right there with him. The cast and then the various braces made it incredibly difficult for me to take him anywhere by myself, so, again, we stayed home.
Caleb can’t regulate his body temperature and a neurologist told me that if he overheats he could die. So 23 summers we spent inside, unless we could be in a pool. Add in the various hurricanes, snow storms and random school cancellations (we have moved a lot) and I almost think Caleb and I spent half of the 23 years he lived with me at home. These were incredibly taxing times and my heart actually hurts thinking of all the children stuck at home right now, typical or not. Caleb’s autism would kick into high gear and he would scream, tell me he hated snow or weather or whatever kept him from his friends. It was exhausting and stressful to the point that at 50 years old, I have 18 significant health conditions. I’m just worn down.
Parenting is certainly not for the weak. Being a parent in this crisis with no known end date is almost intolerable.
For us, this quarantine is different. Caleb is happy. Like I mentioned above, he is with friends and rotating staff. He has everything he could possibly ever want in his new room. I know some of this is maturity but the resounding truth is that he is exactly where he needs to be, and I’m right where I need to be, always ready to go get him if he needs extra care or contracts this virus.
So, the reason I shared all of this is to help some of you navigate this confusing, frightening world. There is so much out of our control, we need to find things that we can control, to give ourselves much-needed mental strength. The stronger we are, the more peaceful we are, the better the chance that our children will feed off of that energy, rather than fear.
I have dealt with depression several times in my life. Depression can be contagious, affecting those in your home even if you think it doesn’t. It can make a stressful situation so much worse. If you need medication or treatment of any kind, please seek it out. If, like my case, it’s a life situation, not a chemical imbalance, try some of these suggestions.
Always make your bed when you wake up in the morning. It starts your day off right and every time you see it, you will see an accomplishment. Shower daily, or as often as you normally do. On dreary days, like this one I’m in, turn on lights. Light candles. String Christmas lights. Bringing light to darkness is always a path to joy.
This one sounds challenging, but it’s a game changer. Keep the house clean. Keep up on the laundry. Do the dishes right after each meal and empty the dishwasher as soon as it’s ready. I can hear the groans, but chaos begets chaos and the goal here is peace.
Exercise if you can—those endorphins will frame your days. If you can’t, play with your kids. The Floor is Lava is always a hit. So is making a fort in the dining room. Have a picnic wherever you can. Bake a birthday cake, even if no one’s birthday is anywhere near. A doctor told me that card games or any games where pieces are exchanged is not a good idea because it would be literally passing germs, but Pictionary or charades allow for social distancing.
If all else fails, take three deep breaths. Take a Mom or Dad time-out. Step outside your front door and breathe the fresh air for just a minute. Try to find just three things to be grateful for and write them down, then look them over later.
The picture for this post is my favorite little lamp. I never used to light it because I didn’t want it to burn out. It’s on every day now. In the words of the immortal Erma Bombeck, “use the good China.”
And always, always, always look for the light.
So much wisdom fills this post. As the mother of preemie triplets who are now 23 years old, I understand at least part of this. The bedrest from three months and five weeks in the hospital awaiting their birth, not being around my oldest daughter through her chicken pox and basic six year old sicknesses, and the need for sanitation in the NICU to keep all those babies safe. Now I’m staying away from my 91 year old mother for her sake. That is hard. But well worth it to keep us all safe. Thanks for sharing your story.
Thank you for your words! I love to hear from fellow warriors. Sometimes we can only understand those like us, so your words both thrill and sadden me. And I understand keeping away from your mom. This is all just so hard. Stay well.
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