The Answer to 'How Are You?' Is Complex When Your Child Has Health Challenges
While I’m sure this probably isn’t just a southern thing, my whole life I’ve followed, my greeting of choice (“Hey”) with, “How are you?” It just sort of runs together, and people usually answer with the obligatory, “Fine, thanks,” or “I’m good. How are you?”
We all say it because let’s face it – do people really want to know how we are? Does the acquaintance in the restroom really want to hear the whole, sorted story of my life at the moment? Does the cashier at the grocery store really care what my typical day is like?
True friends love us through our snark and are woman (or man) enough to tell us to get off our pity pot or conversely lend us that shoulder to cry on at just the right time.
The friends who ask, “How are you – really?” and really want to know — I’m so grateful for those friends.
I don’t want to be that special needs mom who just writes to complain how hard and constant it is, how different or dependent, or sick my child is. I have written such things at times because I think those who don’t live our kind of life need a glimpse to give parents and families of those with special needs the understanding that is so needed and desired at times.
I also have three neurotypical children, and as much as I’ve tried to treat my son Joshua the same, his needs are different, his development is different, and parenting him is just, well, different.
Parenting any child – babies to young adults and in between, special needs or not — is one tough job. But it’s the one I love with everything I am.
But some days, dang it, I just want to say, “I’m tired. I’m over-adulting and want to just do something fun.” I don’t always feel like the “strong mom.” But I have to be because I am the mom and there is no break, no vacation. Even if I were able to get away, my mind would never rest.
When it comes to “those” days, I remember my kids are worth every hard thing I must do.
Recently I was asked “How are you?” at church and I responded, “I’m doing very well,” and I truly was at that specific moment.
But then there is today.
And I’m not really sure how I am. I’m doing the daily, but it lingers somewhere behind, creeping up and in as I plan. Because in one week from today, even at this very moment as I write, my son — the one with Down syndrome and a heart condition, who is nonverbal and on the autism spectrum, who can’t tell me his pain level or express his fears – will be having a six-hour surgery to fix his 60-degree spinal curve.
Preparing by list-making for the week-long stay, coordinating with my older kids about who wants to be there and determining what to do with my youngest distracts me, and I welcome the distraction.
This journey to next week should have been over a year ago. A hump/bump I noticed on his back started in motion a roller coaster I didn’t see coming. We set a tentative date, and then were hit with another challenge that put the spinal surgery on hold.
Joshua had started at a new school after nine years at his elementary school (he started at age 3, and we held him back in fifth grade), and he simultaneously started regurgitating his food. We thought it to be adjustment issues – not liking the cafeteria, the noise, the food. We packed his lunch and tried to figure what made it happen.
Finally, we concluded it must be physical, and he had endoscopic surgery. He received a diagnosis of severe inflammation of the esophagus and reflux, with a stricture which inhibited his food from going down. After several months of medicine, three endoscopic probes and seeing a nutritionist to help with weight gain, we returned to the orthopedic surgeon to reassess.
While the reflux was remarkably better, the scoliosis had worsened, and surgery became inevitable.
Joshua is never a “typical” case. Normally, bloodwork and heart tests (EKG and echo cardiogram) are done under anesthesia when he has other surgeries. But this time we had to hold him down for them to do these pre-operative tests, and he doesn’t fully understand why, and it takes much physical and emotional strength because it honestly breaks my heart to watch.
Surgeries are not new for Joshua. In addition to the endoscopic surgeries, he has numerous dental procedures done under anesthesia, ear tubes, tonsils out, adenoids removed, hearing test (because he can’t respond to the typical ones), ear canals cleaned, tear-duct probe, and I’m sure I’m forgetting something because surgeries and illnesses and hospital stays all run together after a while.
But one I will never forget: Open-heart surgery. The first and most daunting.
October 30, 2002 is branded in my mind.
The anticipatory feelings occasionally rise up and overtake me even almost 14 years later.
I hesitate to say I’m more “used to” him having surgery, but while it doesn’t get easier, it does get familiar. I remember my daughter having a tear-duct probe as a toddler (same as Joshua) and thinking it was monumental. Everything is monumental when it comes to our children.
During one meeting with the surgeon, my husband had to leave as he described what he would be doing to fix our precious son’s back. I listened. In the car on the way home, I looked at my husband and said, “I’m going to have to cry for a little bit.”
And while spinal surgery isn’t open-heart, it’s still major, and while I am honestly OK this very minute, I’m not sure about the next.
I’m pretty certain the feelings I had turning over my 6-month-old to a surgeon to fix his broken heart while mine broke too will most likely resurface as I watch my 14-year-old be wheeled away as I put my trust in my God and a highly-skilled surgeon.
And I will wait.
I really haven’t yet cried the ugly cry. Tears have come, but not the real, body-shaking, tear-streaking, contact-lens fogging, “God, please protect my baby” cry.
There’s something cathartic about weeping. I will let myself at the proper time because I know me and I am a mama and I love that boy with every bit of my breath and will fight for him for everything that is in the deepest parts of my soul.
And I know my God is listening and will put those tears in a bottle and hold them and hold me and most of all hold Joshua.
So, how am I?
I honestly don’t know.
I’m busy and distracted and putting off the thinking too much. I’m Scarlett O’ Hara and will think about that tomorrow.
I’m grateful as I hear him in the other room making his noises and knowing when I walk in to check on him, he will smile at me and I will tell him how much I love his face and he will pull it to mine.
And then I may not be OK.
But he will be, and that is all I need.