WHY I CAN’T TAKE YOUR CALL …

There was no clear way to diagnose it and we had no idea it was even a consideration. But, as is often the case, it was discovered through a routine process of elimination and had nothing to do with the original symptoms.

See, it was the third ear infection in a row for my daughter. And even as I’m typing this, I’m exhausted by thinking about simply recounting the whole, three-month process that led to her diagnosis of Strep. The trips to the doctor; the first medication that didn’t work and having to go back to the doctor to get a different one; the one medication that required her not eating dairy (when putting medication in her cheese is one of the main ways we get it down her – yeah …that was interesting) …all of it …is just stuff we don’t talk about most of the time.

The truth is we don’t talk about a lot of stuff that has to do with our daughter, most of the time. Honestly, we’re just too tired to re-live it to anyone. It’s over. She’s well. We’re fine. Let’s have a glass of wine and talk about YOU. You don’t want to know the actual details of our day. Trust me …you don’t.

Anyone who has children knows how much time they consume, especially when they’re small. All parents understand the struggle of raising kids. But what if your two-year-old never turned three? What if they kept growing physically …but not mentally? How would that look when they turned twelve? Or nineteen? Or thirty?

At the moment mine is fifteen, and I can tell you exactly how it looks and exactly how it feels.

My daughter is as intelligent as anyone her age. But she can only express and react at about a two-year-old level.

See, even though going to the doctor is a drag for anyone, it’s still a routine thing for most kids. For my kid, it requires two people (who are on their game), a de-activated iPhone, hair that is easily managed, clothes that aren’t too fussy, no jewelry, no hats, a waiting room that isn’t too crowded, without too many distractions in it, and a wait time that is under 10 minutes and a doctor that is cool with getting slapped at and having his or her hair grabbed. It also helps if the nurse is nimble enough to get vitals while someone is biting at the instruments and trying to kick him or her. When it comes to doctor visits, my wife manages the “doctor stuff” and I manage my daughter.

Without both of us, a simple doctor visit is almost impossible. We cannot get up and leave our daughter unattended. We can’t fill out paper work without her grabbing for the pen and paper and trying to throw them. We can’t let her sit next to anyone because she will (not might …WILL) pull their hair or grab their clothes or yank their glasses off or throw their purse. We are constantly on guard to make sure our 5’4’’, 135 lb. daughter doesn’t find a baby she wants to play with. At her size now, she could literally kill the child by just trying to be nice to it.

On “normal” days, my wife and I start our day at 5:45 am. One of us gets our daughter up and changes her diaper (we alternate days). Then, we clean her and take her to the bathroom (this is not always as easy as it sounds). We get her on the couch and make breakfast. Then we feed it to her, with all the proper medications going in at just the right times. Then we brush her teeth and brush her hair for her, take her to the bathroom again and put all of her school clothes on her …for her …while she’s flailing her arms and grabbing our hair and beating our backs and sometimes trying to run away. Usually, by the time she’s dressed, we’re in a full sweat.

We walk her onto the special needs bus at 7 am, and hold her arms from hitting other kids and aids until she’s strapped in and settles down. Then, we send her off to school and pray that she learns to move one inch further ahead today than she did yesterday. And we hope she doesn’t hurt someone. And we are terrified that she will be hurt. There is no time during our day that we aren’t concerned for her safety and the safety of those around her.

The bus returns at 3 pm, where one of us gets her off the bus and walks her in the house for a bath and some down time before dinner (IF she’ll settle down). If one of us isn’t there to get her off the bus, they will take her back to the school and notify the authorities. She cannot survive alone.

Once off the bus, we will check her notes from school then check her body for any bruises, bumps or cuts (as she cannot tell us about such things). Then we take her back to the bathroom (again) and help her relieve herself (this can take a long time) then we put her into the tub. After her bath (which is a physical work out and can be very hazardous), she will quietly (and mercifully) play on her iPad for a while until dinner.

Her meals have to be given at the same time every day. And we feed her similar calorie counts. Since she cannot tell us if she’s hungry or not, we have to guess. And since a bout of any stomach issue could result in a week’s worth of drama, we make sure her diet is fairly bland and predictable.

While eating we always encourage her to use the fork or spoon. She can do it, unless she decides it would be funny to sling the food onto the floor. And according to her …that is always funny.

Once dinner (and cleanup) is over, she can watch TV or play on her iPad a little more before bed. That’s if she doesn’t decide to take off through the house opening drawers and throwing all the clothes out or yanking the sheets off of beds or ripping phone chargers out of our phones. Some nights I take her to the mall to walk for exercise. The terrain is even and it is well lit. These are all serious considerations when walking with my daughter. A pothole could break her leg because she can’t adjust to such things the way everyone else can. She doesn’t have the natural impulse to break her own fall. Watching her navigate stairs is terrifying. And her brother is still traumatized by seeing her fall down them, that one day.

30 minutes before bed, she gets another snack to make sure her blood sugar is balanced for the night. Medications are given, her teeth are brushed and I change her into an overnight diaper (I usually do it now, because she’s too heavy for my wife to manage this part of the routine). Then her special-made sleep onesie is put on. She’s placed in her custom built bed and given melatonin to help her get to sleep. If nothing out-of-the-ordinary happens (and that’s a BIG “if”), she will sleep until 5:45  the next morning. And we start the whole process over again. Anything that my wife and I are going to do; any work that needs to get done; any projects that are unfinished; any money that is going to be made; any connections with friends that are going to happen; any time spent with our son, will have to be done in the hours in between my daughter waking, getting home from school and going to bed.

If ONE step in this routine is off by an inch, an entire day could go up in smoke. Once, my wife and I tried to go out on a date. A care giver put the night diaper on just slightly wrong enough that when we came home, we spent the next three hours washing sheets and settling my daughter down enough to get her back to sleep, at 1 in the morning. We both agreed …the date wasn’t worth it. We haven’t been out together since. That was two years ago.

My routine and life isn’t bad. It’s not as difficult as some people’s …not by a long shot. But it is ABSOLUTELY mandatory. Either me or my wife MUST be there …every second …of every minute …of every day. Because we basically live a young woman’s life for her.

My daughter can go anywhere we want to go. But when we get there, one of us will be “on duty” for the entire duration of the visit. That means we will be right on her, watching and attending her every move. We will be restraining her arms from hitting and grabbing and pulling. We will be blocking things she wants to put in her mouth. We will be guarding fragile items, such as anything glass. My daughter’s greatest joy in life is to watch things break. It makes her laugh uncontrollably. So she’s always in the mood to break something. People don’t like their things being broken. So, honestly? We don’t take our daughter out as much as we would like and probably not as much as we should. Quite frankly …it’s just too much work.

Folks often say, “hey bring your kids! You guys can relax.” That’s such a nice thought. But one of my kids is a full time job. I love her with every fiber of my being and she’s one of the best people I’ve ever known. But as long as she is in the room …I cannot relax. And I never will.

I think the world is full of good hearted people who want to help. So many times we are offered …well …something. People don’t know what to do or how to help. But they want to. And it’s always touching to us when they do. But the truth is there’s not much anyone can do. It would take weeks to train someone in how to manage ONE DAY with my daughter. And we’re both so exhausted, the thought of doing that makes us more exhausted. We also know that when they see what they’re going to have to actually DO? Well, some things are simply too much to ask of anyone. So, we smile and say “thank you” and know that we will be out of mind as soon as we are out of sight. And that’s actually ok.

The life we live isn’t the kind of life anyone wants to live. Everyone likes to pretend that nobody has to live this way. When we see those beleaguered parents in the grocery store, you know the ones …with their 30-something-year-old son, who is flapping his arms and giggling like a toddler, we whisper our prayers and walk away, relieved we don’t have to get too involved. I totally get that. I’m that way, myself. I like to run free. And people like my daughter are heavy weights strapped to your feet. No matter how strong you are, you’re just going to be slower than everyone else.

I probably have friends who get miffed at me because I can’t just run out and grab a beer whenever they call, like I used to. My live shows and travel plans have to be meticulously designed and curated so that I’m not gone from home too long. Because handling one regular day in my house, alone, is almost impossible. If something unexpected happens …it’s totally impossible.

“So, what do you want from me?” is probably your next, obvious question. Truthfully, nothing. My family, and in fact, MOST special needs families, don’t want anything from anyone. What we could use is some mercy from time to time. If I don’t get back to you as soon as you would’ve liked, I always hope you’ll understand. Everything else in the world (including ME) is way down on my priority list.

If my wife calls you on the phone and breaks down in tears a little too quickly for your taste, just go with it and let her rant. She needs to do it.

And maybe hesitate when you are about to drop some life-changing advice on us as to how to manage a situation you know nothing about. I’ll guarantee you there are issues with whatever you have read online, that we’ve already explored and ruled out for 5 or 6 different reasons. The only thing more frustrating to special needs families than the friends who have simply decided this isn’t happening and they can’t engage on your terms anymore, is the people who show up once every six months and try to help fix it for you. It’s well meaning, to be sure. But the deal is this …

The real issue with raising someone with special needs is, it is EVERY. DAY. There are no days off when you’re caring for someone who cannot care for themselves. Zero. And while everyone else can go back to a semi-normal house and re-charge after dealing with a special child, care giving parents cannot.

I guess all I’m trying to say is this: if you have someone in your life who has a child with a disability, grant them some grace. Their yard might not look like you want it to. Grant grace. They might have a short temper sometimes. Grant grace. They might be disheveled and not quite with you in the meeting. Grant grace. They may have forgotten a birthday or a school play or a scout activity. Grant grace.

And maybe instead of your church or school raising sixty thousand dollars to send some kids to Guatemala, to build a youth center (which is a great thing to do), think about that family with that special kid no one knows quite how to be around, and send them on a date night. Or invite their siblings to the movies. And if their siblings are a little weird to you or on edge or a bit awkward …well …try to understand that they live in a very different world and have a daily front row seat for a very difficult side of humanity.

And if you find yourself reading a blog that is too personal, too self-conscious, too self-indulgent and too long …maybe let the blogger off the hook just this once.

 

R

PS – And DON’T PARK IN THE HANDICAPPED SPACE IF YOU’RE NOT HANDICAPPED!

25 thoughts on “WHY I CAN’T TAKE YOUR CALL …

  1. Reggie, love your blog always, but especially this one. I volunteer at an equine assisted therapy facility and enjoy helping special needs kids and adults. As such, I have several friends with special needs kids. Your blog brings a lot of their challenges to light. One special friend who had a severely challenged daughter that required hands on 24/7 care, just lost their 25-year old daughter. She had a stroke a year ago and progressively got worse. As absolutely challenging as caring for her was, they are going through quite a readjustment now. As a concerned friend, I can offer love and space. Thank you, Reggie, for bringing awareness to special needs families. God bless.

    Liked by 3 people

  2. Hi – for the past several months, I have been helping my husband who gives medical treatment to special needs adults. He has been doing this work for 20+ years and I am finally able to share in his compassionate work. He loves his patients – talks to them about every thing – doesn’t matter what the topic of the day is – they ALL respond with their eyes shining brighter or with their tremors quieting down….. I see the Mom or Dad or the caretakers that love them and know that they possess a very special virture that not all of us have. Thank you for sharing your love for your daughter – thank you for sharing what we take for granted – thank you for showing us that love for one’s child truly has no bounds.

    Liked by 3 people

  3. Regie, you, your wife, your daughter, your son, none of you asked to be heroic in this life. Yet, with love, grace, and honesty, you rise to what seems to us with able bodied kids the impossible.

    I pray that you all are attended to by the most compassionate of angels.

    I pray your daughter will always be safe.

    And I pray that each night peace will fill your hearts.

    Thank you for sharing your life, you might not be able to answer our calls, but we can answer yours and keep you in our thoughts and prayers.

    Liked by 2 people

  4. I am moved by your incredible commitment to your daughter. I am new to your blog, and discovered it after deciding to google your name today after listening to “Shelby Street Bridge” for about the 100,000th time on my Ipod. I bought your album American Dreams when it first came out, but hadn’t really been following your career since. However “Shelby” always was a very moving song for me, even more so in the last couple years as my brother has become homeless due to mental illness. So while I am not sure why I was meant to stumble upon your blog today, I am looking forward to following your amazing journey with respect and admiration.

    Liked by 2 people

  5. Refuah Shlema in this unending loving labor. I could not have imagined what caring for your daughter must be and feel like, but now parenting a toddler and having read this vivid depiction I do believe I can see it hazily in mind’s eye. Thank you for sharing.

    Liked by 1 person

  6. As a fellow AS parent, I do recognize the truth in this article, but if I was your daughter I would be mortified that my father had shared such intimate details of my life with the world. It’s your job to protect her, not exploit her story, even to gain understanding from your peers.

    Like

    • Comments like these are always expected. We call it “the angel police.” No matter what you do, it will be wrong. I purposely don’t write about my daughter as much anymore, for this very reason.

      Believe it or not, I actually agree with you to some extent. I try to consider her privacy and her personhood and not share intimate details that might be embarrassing to her whenever I write or talk about her. I don’t think I did that in this piece. I simply recounted her routine. If anyone comes to my house they will see it up close and personal. There’s nothing there that isn’t known by her school or our family acquaintances. I’m not sharing toilet details or feminine hygiene details. I would never do that. But to pretend my day (and HER day) is anything other than what it is, is a disservice to our community and our children.

      Having said that, I have to balance not exploiting my daughter with the responsibility I have as widely read blogger to open people’s eyes to certain things they may not be aware of. I’ve had MANY messages of gratitude for this piece and I believe it will make a difference for some people. I apologize if you’re offended by it. But your comment is heavily outweighed by hundreds more from families all over the globe, who want people to get a small glimpse into their daily struggles.

      That was my intent. I think my daughter would be okay with that. After all …I know her better than you do.

      Thank you again,
      Regie

      Liked by 3 people

    • Shelane – how would you like to be judged the way you are judging Regie? Just something to think about.

      My stepdaughter, Marisa, had Cystic Fibrosis and tried to keep her illness hidden (except from people she knew well). As she got older, and sicker, we talked with her about educating others. Ever her closest friends didn’t realize how difficult her day-to-day routine was. Until she (or we) shared those details, nobody could possibly understand what she went through every.single.day. Education is awareness. Awareness is enlightenment and understanding.

      One time, Marisa was in the bathroom having a coughing attack and someone in a stall said, “Smoke another cigarette!” Marisa calmly waited until the woman came out of the stall and explained that she had CF and what that entailed. The woman was mortified at her own behavior and very apologetic. She thanked Marisa for saying something to her. Believe me, without our encouragement and push for her to educate people, Marisa would have NEVER done such a thing.

      Regie and his daughter have educated us all, and for that, I am thankful.

      Liked by 1 person

  7. Regie I got to meet you personally last year at the Bluebird Cafe. You touched on the situation with your daughter very lightly. You were not complaining or exploiting her then. You have such an upbeat personality nobody would know what you go through each day. You shared your experiences that brought you to write “The time of my life”. I told you that I have had that song on my ipod for several years. It was such an honor to meet you – the writer, and understand what feelings brought you to write it. It makes the song have even more meaning to me. Lots of hugs

    Like

  8. Dang, I love you so much. I stumbled upon you by following my friends in Nashville. I think I’ve posted a little something before on your blog. My son and daughter-in-law have the almost exact same life as you. They have a little 12 year old boy. Funny, I call him little, because he is forever stuck as a two year old also. Sometimes bright, loving, and tender moments. Sometimes. The cruelty of his challenge is exactly as you describe. They have to think what will happen when they die? What if something happens to one of them? Cooper is, at the least, a two man job! Always. I’m probably even writing this to somehow make ME feel better. To share with someone who “gets” it, is sadly, relieving for me. As a grandparent, we do everything we can to help. Meet Coopers bus every day, try to relieve Darren and Jennifer, get Cooper so they can take a nap, but we’re getting older. More tired. More drained. More hopeless. And oh the guilt we have for enjoying life, when they have to suffer and be isolated!!! Our faith, at least mine, diminishes everyday, trying to figure out this thing we Christians call prayer. I hear about people who pray for a good parking spot, all the way to asking God to help them win a ball game. Win a ball game! Win a ball game!!!! Are you serious?! I plead with God everyday to tell me the magic secret code for getting prayers answered. He seems so inconsistent. If He did help a football player score a touchdown, what a cruel God to not heal a little boy?! If we all knew that code, then wouldn’t all prayers be answered. Yes, I know, that’s immature theology. I get that the church has taught “bellboy” theology for the last one hundred and fifty years. Anyway, the suffering of a special needs family goes layers deep. It even wrecks families. Divorce rates are high in the special needs family. Alcoholism is easy to slip in to, in order to numb.
    So anyway, I know your transparency doesn’t make your chaos any better, but I hope they’re are others, who’s eyes gaze over your words, feel a little less lonely. A little more heard.
    You’re the best!
    PS I decided I wouldn’t go back and edit this. I’m afraid I would sterilize it.

    Like

  9. Regie, prayerful support to you, your wife, son & daughter. May you find moments of rest, laughter and lightness during this season of your lives. Writing about the date night brought back a vivid, similar experience for me and my husband. My father, passed Oct 2015, had Parkinson’s with dementia. He lived with us for 8 years, the last 2 totally dependent on us for all needs. We had a day caregiver while my husband and I worked full-time. Daily I’d race home to start my 2nd full-time commitment caring for my father. I cannot understand the demands placed on you and your family, but I can relate to the full-time care, consideration and planning or re-planning to do anything outside our home. I struggled each time I had to change my dad’s diaper, empty a catheter, etc. Somehow, the strength was given to persevere. Folks do mean well, but, until they wade in your shoes, their understanding is limited. I pray you find a miracle of a relief caregiver who can buy you some recharge time.

    Like

  10. I have a friend whose 4-year-old daughter (half of a set of twins) has Rett Syndrome. It truly is heartbreaking. I would never have met her if she hadn’t shared her story on facebook, and I must say, I am a better person for having known this family. The awareness of the disease, sure, she’s raised that, but sharing the very real experience of living the life she does… that is worth so much. Ivy has changed so many lives, and your sharing your daughter’s story will change someone’s life, too, in ways you’ll never know.

    People tell Ivy’s mom that “God only gives special children to special people”, and her answer to that is that if she IS special, it’s only because loving Ivy has made her so.

    Thank you for sharing your family’s story.

    Like

  11. Just saw this post. Regie, I have been blown away. I knew you had a challenging parental role, but I had no idea. I love how you are able to think so clearly and articulate so cleanly. Now seeing this part of your life, I really feel like a slacker. H/T to you and your wife. Fat & happy karma account. All this, and you still give me a smile. Always the giver…. thank you.

    Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s