The One Thing I Wish I’d Fought Harder For

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Regrets — we all have them in some form or another. I suppose that the toughest ones for a lot of us revolve around our children and parenting in some way. I generally don’t like to hold on to them. I am, for the most part, a “glass half full” kind of gal. A positive person. So “could have,” “should have” and “would have” regrets are generally not my thing.

My family has moved a few times recently. Big moves, to different states. I said to my husband once when we were recently discussing moving, “I think I can be happy anywhere.”

He looked at me and, with a hint of disgust, said, “Yes, I think you could.”

He is the yin to my yang, so to speak.

I believe contentment and happiness come from within, and I am aware that all of that is often easier said than done. However, it helps me to remember this during difficult of times and circumstances, when things catch us off guard and when life suddenly takes a left turn and we have no idea how we got to a place we never intended to be.

That being said, honestly, I do have a few regrets.

Several years ago, during one of my lowest points of desperation, helplessness, heartache and anger, I just cried, “God you have to help me, you are supposed to help me. I don’t know what else to do. Please, just point me in the right direction.” I essentially promised that if God would point me in the right direction for my son, Cooper, I would walk forward with everything I have and not stop.

Here is where the regret comes in. To be totally honest and fling my cabinet doors wide open and let you see the mess, there have been times when I just gave up. I know as parents we are supposed to advocate and fight for our children with everything that we have. And we do, for the most part.

Looking back, though, there are things that I wish I had fought harder for and had not given up on.

One of those things is inclusion. Yesterday, when I read this post, my heart broke a little. It broke because I regret not fighting harder for Cooper to be included.

My daughter, Hannah, grew up with a boy in her grade who had autism. He was fully included from the beginning. When Cooper was getting ready to start school, I remember asking Hannah questions about how this classmate functioned in the room — everything from what type of work he did to a barrage of questions about how the other kids interacted with him and treated him. Finally, exasperated with my questions, she gave me an answer that has warmed my heart and haunted it at the same time.

“I really don’t know what you want me to say. He’s just one of us.”

Inclusion is important because it leads to community. It is something that typically-developing children have because they go through school with a community of peers — a group of friends who, for better or worse, have a bond. Yes, some are stronger longer lasting or more more resilient than others. But in some form or another they all have a sense of belonging, of being a part of something. They recognize each other and say things like, “He’s just one of us.”

When children are denied an education, they are denied a community. Our children miss out on a support system. They miss out on friendships, valuable learning experiences and life lessons.

Cooper does not have that sense of community found among classmates. He does not belong, he’s not one of them. While this makes my heart sad and I regret not fighting harder, I can not change the past. We can only move forward.

Inclusion creates community. Everyone matters. Everyone has value.

Fight. Do not stop.

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How Special Needs Parenting Is Like Getting on an Airplane

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dv2073216 Do you remember what the flight attendant says at the beginning of a flight? The part about securing your oxygen mask before helping others in the case of an emergency? I always nod my head in agreement. But sometimes, we need to really listen. Stick with me for a minute as I compare special needs parenting to flying the friendly (or not-so-friendly) skies.

We’re used to this turbulent flight of life with special needs. Routine and good planning gets us through the usual bumps of a busy schedule of “regular life” plus therapies, doctor visits and so on. Mommy has packed snacks and games to keep us all entertained — no worries. Little moments of prayer at church and date nights with the hubby smooth out the other bigger bumps. Then life gets a little more turbulent.

Late to swim, late to martial arts. Bump. Extra chats with friends while in the car running from here to there for a little in-flight entertainment smooth the journey. You’re out of clothes in the middle of the week? But I just did laundry. Bump. In trouble at school three days out of five and phone calls from the other kids’ teacher? Extra activities that are fun but require more running and balancing and shopping? Bump. Extra coffee break, breathing, snuggles in the quiet moment. Check. Short-staffed at work for even longer? Hubby working late more? We’re back to not sleeping through the night?  Bump. Curve ball at the IEP? I’m out of snacks. Slap in the face of more milestones not met again? BUMP. If I have to sing one more song or remind you to use your words or answer one more ‘why?’ I may lose it. More screaming and complaining? Of course you don’t like what I cooked for dinner. Lunch meat that I was going to use for lunch is out of date? I forgot to send what paper to school? Four Valentines parties? I only have two kids! BUMP. I can’t breathe. I’m out of soothing words, and it’s only 9 a.m. 

Mayday. Mayday. This mama is going down.

Wait… what was that someone said about needing to breathe so you can help others? When exactly am I to do that?! Right. Now. If you can’t breathe, then you can’t teach them calming breaths in a meltdown. If you can’t find kid-appropriate words when you’re mad, then how can they? Easier said than done, I know. Mommy guilt sneaks in even when you know you need a break. I suggest Girl Scout cookies, a bottle of red wine and a book that has no pictures. If you can find 24 hours in a hotel room to enjoy silence, it’s totally worth it. If it’s finally taking someone up on watching the kids for an evening/afternoon — totally worth it. If it takes putting your kids to bed 30 minutes early without telling them (may take some pre-planning of changing clocks, just don’t forget to change them back once they’re asleep) — totally worth it. 

I again have snacks for the bumpy flight (not Girl Scout cookies; those are only for Mommy). I can sing that song again or maybe even 400 more times if needed to calm someone down. I can smile and be happy for my friend that got to go on a real vacation. I can welcome my hubby when he comes home late from work with a kiss rather than a rant. I can send calm emails to advocate for my kids and notice the great moments while flying the friendly skies of parenting.

Show yourself some incredible love. Do something nice for yourself. You deserve it. (And so does the rest of your loved ones who have to deal with your crankiness when you don’t.)

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To the Woman in the Grocery Store Who Turned Out To Be My Guardian Angel

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Two and a half years ago, over Father’s Day weekend, I went to the gym and then out to buy steaks. I’d been having short, intense headaches, but at the moment, I felt great.

I went in the store with two of my children, the third choosing to sit in the car right out front. I went to get the steaks, and all of a sudden, my tongue went numb. I felt an icy line separating my brain from my head. I couldn’t speak; I started to shake and drool.

I went to the side of the store and held onto the counter. I sank to my knees to signal that I needed help. I heard my kids start to laugh and then start to cry. A voice said, ” I think something’s going on over here.” A woman, my angel, came over to me.

She started issuing instructions. Someone to take my kids away, someone to call 911, someone to look at my ID and find my name. She told me who she was and that she had some medical training. She gave me a tissue because I was drooling and held my hand. I kept trying to speak to let her know I had another child outside, but she stopped me, telling me I was only getting more upset because I couldn’t talk. Then I heard my oldest son tell someone about his brother and that my cell was in the car and he could call my husband. My angel called my husband, helped get me and my boys to the back room and stayed until the EMT arrived.

I was later diagnosed with a brain tumor and so far am doing great. I’ve had great doctors, my best friend works in oncology and paved my way for me and a million people support me. But that woman — she will always be part of my story. She kept me and my kids calm in the scariest of situations. She held my hand. I will always be grateful to her.

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My support system.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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To the Man at the Auto Shop Who Asked About My Preemie Baby

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Seven years ago, my daughter was born three and half months prematurely.

Every day was a battle for her, and every day was a battle for us financially. We had next to nothing and were living at The Ronald McDonald House in Colorado Springs, Colorado, and I was a thousand miles overdue for an oil change.

I found the cheapest place to spend my last $30 and naturally had to decline any extra services. As I waited for my car to be finished, a gentleman asked about the photo of a baby on my dash. I explained the circumstances of my daughter’s birth and fight, and he said we’d be in his prayers.

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As I went to check out, I was told our bill had been covered. If I’ve ever needed help, it was right then, and I believe God sent me to exactly the place I needed to go.

I’ll never forget that man and am reminded of him any chance I get to pay it forward.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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These Photos Are a Reminder That Our Loved Ones With Alzheimer’s Are Still People

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“Nana said, ‘Bill’ today!” my mom exclaimed before she even had both feet inside the house.

She’d just gotten back from spending the day at Mary Manning Walsh Home, the nursing home on Manhattan’s Upper East Side, where my grandma lived for the last few years of her life.

It shouldn’t have been a big deal that an 80-something-year-old woman said her late husband’s name, but for us it was.. My nana had not uttered a lucid sentence in about two years. Since her dementia diagnosis and two mini strokes, she barely reacted to those around her, including her three children. She gurgled off syllables that made no sense and needed to be hand fed. She wasn’t Nana, really.

Except that she was.

Her mind was slipping away, but with that one word — “Bill!” — we remembered she was in there. She was still Nana, a mother of three, a woman in love with the husband who stood by her side until his dying day (I’ve written about their relationship in more detail here, if you’re interested).

With Julianne Moore’s Oscar win and important acceptance speech, the film “Still Alice,” which follows a woman living with early onset Alzheimer’s disease, rocketed into the spotlight. I’m thrilled about this.

I’m also thrilled that the film’s title inspired the Alzheimer’s Association’s most recent Twitter campaign, where followers send in photos of their loved ones living with dementia and Alzheimer’s disease. With each picture, users include a hashtag like #StillMom or #StillPopPop. I love it because even though my nana passed away in 2010, it’s comforting to think she didn’t die as someone else. Her mind’s deterioration was sad and painful and at times even cringeworthy, but she was still Nana.

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Nana with her five grandchildren.

So to me, and I’m sure to many others, the hashtag is more than a social media trend or this week’s buzzword. It’s a tribute to the ones who won’t be around to see a cure for Alzheimer’s.

It’s a reminder that when they died, they were still nanas and moms and brothers-in-law and best friends and husbands. They were still people.

Take a look at some of the submitted photos below and follow the campaign on the Alzheimer’s Association’s Twitter page here.

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When I Realized My Daughter’s Feeding Tube Isn’t the End of the World

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On Wednesday, my daughter, Celine, had a nasogastric tube (NGT) inserted. The week before, her speech therapist called to tell me that after reviewing Celine’s Modified Barium Swallow (MBS), she learned that my daughter was aspirating liquids and would probably need temporary non-oral management for them (she was fine with purees, thank God). I stubbornly said no NGT before the idea was even mentioned. The speech therapist simply said we would discuss that next time we met. 

Screen Shot 2015-02-23 at 3.59.09 PM A few days after, Celine woke up with a fever and a cough. When your child has muscular dystrophy, a fever and cough are not to be taken lightly. I rushed to the nearest pediatric emergency center only to discover that she had an upper right lobe collapse (the second one in three months) and an infection in her lungs, the third one in three months. I called the speech therapist, begging for an NGT.

The day she got the NGT inserted, I cried. I cried a lot. I felt like I was in mourning, though I’m not exactly sure what I was mourning. I initially refused the NGT because, well, I’m human and I’m vain. I didn’t want a tube across half of my daughter’s gorgeous little face.

I also think in some ways, until that point, I was in denial. Celine is almost 18 months old, but she looks like she’s 10 or 11 months old, so when people see her in her stroller they just smile at the cute baby. Nobody thinks there is anything “different,” so I guess I’ve never had to face the reality of her condition. Now, she has an NGT. The whole world will know. I was pushed out of my happy little world of denial.

I spent most of that Wednesday in tears. Every time I looked at her, my eyes would well up. Then, I read an article about a mom who celebrated her daughter’s wheelchair day, and I felt silly. I felt like a hypocrite. I felt like by being so sad, I was letting my daughter down. How will she live with her condition and accept it if her own mommy can’t? I’m all about doing everything I can to give her a comfortable future, but I am her present. If she doesn’t get a comfortable present, where will the comfortable future come from?

So, I dressed up my little girl and took her and her sister out for dinner. We finished our dinner (without anyone commenting on the NGT!) and walked into a recently-opened gourmet foods market to take a look. A man walked by and actually stopped to stare. Celine, being the friendly and social toddler she is, smiled and said, “Hiiii! Howa yoooo?” The man’s face went completely white, and he rushed off. It reminded me of pranks I’ve seen on TV where a human poses as a statue and, when people stop to admire the work of art, the human moves and the admirers freak out. He could have at least answered her or asked me why she had that “thing” across her face. I would have been more than happy to answer.

Celine will have her NGT for the next 12 weeks while we do intense VitalStim and swallowing therapy. Then, the MBS will be repeated. She cleared an MBS at 9 months, so hopefully she’ll clear it in another 12 weeks.

But if she doesn’t, we’ll find another solution and keep moving. A feeding tube is not the end of the world.

 

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