Have you ever heard the phrase ‘it’s not all sunshine and roses’? Usually, it comes from someone describing what seems to be an otherwise amazing situation that has some hidden drawbacks you never thought about. Making a movie? It’s not all sunshine and roses – there’s hard work and long hours and directors to deal with. Traveling the world? It’s not all sunshine and roses – the time change, hotel change, and distance from family make it tough.
Being a special needs parent? It’s not all sunshine and roses.
That last one, I can almost promise you, has never been said. I take that back – it has been said by a group of special needs moms who finally have a night out to themselves and is promptly followed by tear-filled laughter and the clinking of the multiple wine glasses as they toast to the amazing joke one of them just made.
It’s hard sometimes to see the forest through the trees when it comes to special needs parenting. When you’re in the thick of it, finding the humor and, dare I say, benefits of having a kiddo with multiple challenges can be tough. But, I’m here to tell you something, to let you in on a secret that we, as the moms of kids with needs often unlike their peers, have that you may not have known.
If you look hard enough, there are some roses.
Yes, a lot of those roses take a strong, sarcastic sense of humor and an ability to see the strange benefits you never thought you would see from the tough hand you were dealt. But they’re there, and I’m here to share them with you.
- Built-in Babysitting. Jackson spent more of his first year of life in the hospital than out of it. Between his initial stay and the repeat visits we have made to both our home hospital and those out of state, he has had more nights in a hospital bed than in his own crib at home. And that sucks. As much of a pain as babies can be in the first year of life, you would rather simply walk to their room to pick them up and see them than have to drive 45 miles a day through Houston traffic to visit, only to turn around at the end of the day and make your way back home.
But, it wasn’t all terrible. During that time, I was sure that Jackson had amazing care and was under the watchful eye of a highly (HIGHLY) trained nurse who knew how to react in an emergency. No, that doesn’t mean I was going on some Caribbean vacation while my kiddo laid in a hospital bed. But, did I take a few nights to get a solid stretch of uninterrupted sleep? Yes. Did his Dad and I catch a movie or grab dinner? Umm, yes. Did we do it all without having to worry about finding a babysitter for kiddo? HELL YES.
- Clutch parking. Jackson’s (multiple) conditions qualify him for a specially designed stroller that helps with his trunk support, head control, and posture. It’s a great piece of equipment – it allows him to sit up and interact with the world (my choice, not his) instead of hiding in his car seat, oblivious to what is going on around him (his choice, not mine). This thing is also the size of the Millennium Falcon – small enough to be maneuverable but big enough to be a pain in the ass with about as many buttons, levers, and seatbelts. Attempting to load and unload a baby into this monstrosity in a normal parking space is hell, especially in Texas where everyone has purchased the largest truck they can conceivably find on the lot.
Enter the handicap parking tag. Now, we roll in, load up and we’re off. It’s amazing what this blue piece of plastic has done for my sanity when it comes to getting Jackson out of the car. You know what else it has helped with? My consistent ability to be late to any and every appointment I have ever made. I try, I really do. But, when you’re running from one specialist to another and the first had you wait for three hours for your 35 second appointment, late happens. Sue me.
- The proverbial ‘Get Out of Jail Free’ Card. Call me a terrible person, but there are times that I just don’t want to leave the house. I’m a homebody – I like my people and I really like my stretchy pants. My couch is my happy place. I’m boring, get used to it.
And you can double up that whole ‘terrible person thing’, because if I told you I had never used Jackson’s condition to get out of something I didn’t want to do, I’d be lying. ‘Oh, I’d love to come, but Jackson has doctor’s appointments’. ‘We’d LOVE to be at your child’s birthday party, but Jackson was recently sick’. ‘That sound like fun but it might be tough with Jackson’. More often than not, the thing I’m doing instead of whatever you invited me to is sitting watching Netflix in my sweatpants. But we can both sleep a little better knowing that you think I WANT to come and just can’t, even if it’s a lie.
- The best group of moms you’ll likely ever meet. The first few weeks in the NICU (or CVICU, in our case) are tough. Then someone finally cracks and yells ‘IM GOING TO GET WINE! WHO’S COMING?” out their child’s hospital room door and the moms come running. I wish this were a lie, but that’s basically how I met some of the best moms I know who would help Zach and I through the hardest times we experienced with Jackson. And, trust me, they are definitely one of the roses of this entire situation.
You have never met a group of women with more humor, more grace, and more strength than a group of women whose child is living in the ICU. Nor have you ever met a group of women more ready for wine night than a group of women whose child is living in the ICU. Sure, getting us all together can be tough – someone is always having a procedure done, someone is always meeting with a doctor, and someone’s child is almost always giving them hell by coding, crashing, or otherwise not breathing 10 minutes before they’re supposed to leave, but when you do finally get us together, strangers become friends and friends become family. It’s often said that we are part of a team no one asked to be one, but it’s a team of the strongest women you will ever meet and a team I’m glad to be a part of.
So, it’s true – there are a few good things about having a child with complex medical needs. But don’t tell anyone, because I really don’t want to go to that birthday party.