To the Special Needs Mom Who May Never Sleep Again  

I may never sleep again.

As moms, we’ve all had this thought run through our head at one point or another.

Maybe your baby is less than six months old. Sick or teething. Maybe you recently potty trained them or they’re going through a sleep regression.

No matter the cause, it’s exhausting and mood-altering.

Lack of sleep clinically shuts down our brains.

When my oldest child went through some tough sleeping phases, I learned to cope on those endless nights by reminding myself of a simple truth: It’s just a season. Eventually, he’ll sleep! This will not last forever.

And for me, that was (almost) always enough. Unfortunately, that truth no longer works for me.

Because now, I’m also mom to a medically-fragile child.

This life — this state of exhaustion — is my new normal. It will not pass quickly. Not next week or even next month or year.

Sleep deprivation is my life.

Ventilator alarms chime in the night. Feeding pumps beep when they run out of food. My sweet toddler cries for help, sometimes every hour, because she lost her pacifier or needs to be turned.

tired momThe middle of the night is hard. At times, it seems like the sun may never rise. But I take comfort in knowing I am never alone.

Because somewhere, across this town or maybe even down the street, I know there is another mom awake like me. And it’s this mom, and her special child, who help me find the courage to stay up another night and fight for another day.

So, if you’re a mom out there who knows what I’m talking about, let me give you this new mantra to carry you through: 

Strength for today, bright hope for tomorrow.

A good night’s sleep may be rare, but we can still live and give and love our children the best we can.

Here are a few more strategies I’ve found to help me cope:

Mental Game. When it’s dark and you’re alone attending to your child in the night, your mental game can be your strongest ally (or greatest enemy). I am much better off when I simply ACCEPT that I may not go back to sleep. It’s like my focus changes from trying desperately to “fix” the problem (or crying child, or malfunctioning machine) to return to bed, to just taking care of whatever it is I need to do.

I’ve learned to turn my expectations into hopes. For example, I do not expect to go back to bed . . . but I hope I will be able to. This helps me not get frustrated or angry, or weep my way through the night. Instead, I can pull up my mom leggings and take care of business. And sometimes, I am pleasantly surprised when I actually do return to that elusive sleep I know I so desperately need.

Take turns. Experts say that six hours of deep, uninterrupted sleep is better than eight hours of sleeping with interruptions. One way to survive is to split shifts with your spouse. You take Mondays, Wednesdays, and Fridays if they take Tuesdays, Thursdays, and Saturdays. Sundays are fair game.

Or, if it’s easier to take things in shifts, split the night into two. One parent sleeps from 8:00 p.m. – 2:00 a.m., and the other sleeps from 2:00 a.m. – 8:00 a.m.

Is this normal? No, it’s definitely not. But what is? It could save your health . . . and your sanity.

Coffee and prayer. Every night, before bed, I pray with my daughter. I ask God to protect her lungs and to help her sleep. To give me abundant rest and multiply the sleep I am able to get. And every morning, my husband brews the most glorious pot of dark, Colombian roast coffee and pours me a mug before I do anything else.

This is called coping. Find your strategy.

Talk to God. Drink the caffeine. Pray for rest. Buy a t-shirt that makes you feel awesome. Some days, it’s the promise of that hot cup of coffee that I cling to the most.

Bright hope, mamas. Stay strong. You can do this.

Fort Worth Moms hosts several community groups via Facebook, including the Moms of Kids with Differences and Disabilities Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.

Jenny
Jenny is a West Texas girl who married her best friend and Baylor sweetheart, Chris, in 2005. She spent her 20s running marathons and traveling as a writer and photographer for a global ministry, Buckner International. In 2012, she and Chris became parents to son Miller and in 2015 to daughter Emmeline, who was diagnosed with a rare neuromuscular disease, Spinal Muscular Atrophy (SMA) – type 1. Now Jenny lives in Burleson, Chris’ hometown, and focuses her time on caring for her daughter and helping other families of medically-fragile children. Jenny loves Jesus, family, good coffee and wine, meaningful conversations, musical theater, shopping, and porch sitting. And an occasional run, or walk. Whatever. (Photo courtesy of: Uneartherd Photography).

12 COMMENTS

  1. As usual, so beautifully written!!! Thank you for the hope and strategies! Know you aren’t alone momma! All my love!

  2. Perfect! Thank you. I loved your perspective. I’m mom to a child with SMA, too. I no longer cry at mattress commercials where the people sleep so peacefully. I play mental games, and really cherish that coffee and my husband who makes the coffee and takes turns on night Duty. Thank you, it is really nice to know there are other moms and dads like us out there ?

  3. This was THE most encouraging thing I’ve read thus far. No false hope given. No promise of change. Just coping with the present, I love it.

    I have a 5 year old with autism, with a severe sleep disorder. He sleeps 3 hours a night with 3 different sleep meds on board. I have a medically fragile 2 year old on a monitor. I have a newborn baby. We don’t sleep any more.
    I have never thought about switching the days my husband and I get up. Right now I get up with the newborn and 5 year old, and he gets up with our Mrs fragile girl. I think it’s truly shaving years off of our lives. But we push through, because it’s all we know to do.

    • Thank you for sharing. I get it, and there are so many other moms who do too. Hope you can try the “switch off” idea so you can both get some rest every once in a while. ❤️

  4. Today I am exhausted as usual wondering why I only can sleep as long as my kid with autism. Sometimes I be out of my mind then other times I’m ok less sleep makes me feels so sad when Appointments’s are daily but moving forward no choice feels like hell.

LEAVE A REPLY

Please enter your comment!
Please enter your name here