Celebrating Acceptance

When we think of Valentine’s Day, we think of love. And this year, for me, there was that. But it was also a celebration of one of the principles that accompany love – acceptance. Allow me to elaborate:

Last year, my daughter began kindergarten at a new school. We found ourselves in a community of people where I was the only person, let alone parent, in a wheelchair. She and I both dealt with her peers’ questions. Some kids were curious in an innocent, friendly, compassionate manner while others would abruptly ask, “What’s wrong with you?” “Why doesn’t your mom walk?” “What’s wrong with her legs?” While my daughter and I are used to being stared at, pointed at and either answering or dodging questions while in public, this was her first experience dealing with all of this amid making new friends and find her place at her new school.

By the time Valentine’s Day rolled around last year, us parents were sending out sign-ups and emails for the party that was to take place in her classroom. I helped her pick out treats and cards for her friends. And then, one night during dinner, I mentioned being excited about coming to her party the following week. She glanced shyly at me and asked, “Would it be okay with you if you didn’t come?” I asked her why? She said it would embarrass her; that I was the only mom in a wheelchair and she just wanted to have fun. I was crestfallen yet I couldn’t show her how bad I hurt. I told her I understood and only wanted her to have a good time. I promised her I wouldn’t come. She thanked me. It was the first time she’d ever told me I embarrassed her or told me she didn’t want me to join in on something she was doing. While it hurt my heart so bad, I knew it wasn’t about me. I couldn’t let on how I felt because it would make her feel guilty. The day of the party, I sat out in the carpool line waiting for her festivities to be over so I could hear all about it. A fellow mother sent me some pictures since I ‘couldn’t be there.’ That was my undoing. I started sobbing. I wanted to be in there watching her smile and have fun. I cried harder as parents and kids began coming out of the school with bags full of treats and cards, smiling and talking a mile-a-minute. But by the time my little girl got in the car, I’d dried my tears and listened as she told me all the fun things they’d done and what she’d gotten from her friends.

So, fast forward to this past Valentine’s Day. The same planning began taking place leading up to the holiday. The parents signed up to volunteer time and items and I took my daughter shopping for her classmates. I assumed I wasn’t coming and so made no plans to do so. The night before Valentine’s Day, she asked me if I was coming. I asked her if she wanted me to and she responded, “Of course! I love you! You have to be there!” I was elated! I realized she’d come to a point where she no longer cared about how I functioned as a mom; she cared simply that I was her mom and she wants me to be present. Her friends and classmates have also become less shy and inquisitive as the year has progressed. I wonder if they’re realizing I’m just like their moms, except that I parent from 6 wheels instead of 2 legs. I feel accepted there, even by other parents who didn’t know quite how to interact with me at first.

The party this year was so much fun! And to be a part of it; to be wanted there, needed there felt divine! The teacher had taken the students out of the classroom so that me and a few other moms could set up the party. When the students began filing into their newly decorated room, my daughter spotted me, yelled “Mommy!” and ran into my arms. Our embrace was caught on camera by another parent and it embodies the love my daughter and I feel for each other. And, this year, along with that love has come major acceptance of our situation, of each other. Yet isn’t that what love is all about?

Valentine's pic

photo credit: Steve Slone

Advertisements

The “Mommy Guilt” When You Have a Child With a Rare Disease

M holding thermometer         

          Emergencies in my baby girl’s life were something of a biweekly event. Starting at about two months of age, I rushed my daughter to the Children’s ER often for gastric issues. These episodes consisted of her not being able to keep formula/food down, refusing to eat and screaming in pain that could not be comforted. I was told to switch formula time and time again until she was nearly 7 months old, at which time it was suggested she may be lactose-intolerant and we began a soy-based formula. But even then, she continued to have issues with her digestive system. and didn’t hold solid foods well.

            My daughter is now seven and still has gastric/digestive problems. We’ve since learned she is NOT lactose-intolerant. In fact, last year, she was diagnosed with a rare connective tissue disorder called Ehlers-Danlos Syndrome and she has type 3, otherwise known as hypermobile Ehlers-Danlos Syndrome (hEDS). I’ve learned to stop rushing to the doctor or the hospital due to her headaches, sore throats and stomach pains. In some ways, her being diagnosed with a rare disease has relaxed me when it comes to her medical treatment. The more I learn about hEDS and figure out her unique set of symptoms and their severity, the less I tend to freak out about certain aches, pains and other things that used to panic me.

            Yet, recently, I learned another lesson: that having a child with a rare disease will keep me second-guessing my choices regarding her care; that I’ll feel guilty about my decisions surrounding her symptoms no matter what I decide; that I’ll think I’ve made the wrong choice for her no matter what.

            I came to this emotional revelation a few weeks ago when she began complaining of stomach pains again. I gave my pat response I’ve learned over the years and on a Sunday evening, we went through her bed time routine as usual even as she persisted that her stomach hurt. The next morning, after she was dressed for school, I happened to caress the side of her head and realized she was warm. Her temperature was only 100.3 but I called school to let them know she wouldn’t be there. She was still saying her stomach hurt but her tone had changed to one of intense pain and urgency. I called her doctor and they agreed to fit us in later that day. I gave her some Motrin and let her lay down. Less than an hour later, I went in to check on her and found her white as a sheet, teary eyed and burning up. Her temperature had risen to nearly 103.0 even after a dose of medicine. I called the doctor and they said to take her to the Children’s Hospital immediately.

            After several tests and an x-ray, I learned that she was severely impacted. I was given a prescription for laxatives to give her twice a day for a week and told to continue maintenance laxatives so this didn’t happen again. The two lead doctors said this could have been related to her hEDS but we can’t know for sure. I sat there waiting for our discharge papers feeling silly all over again. I’d thought she had appendicitis or a similar serious condition and here she was constipated, albeit significantly. When one of the doctors came back in, I told him I felt ridiculous and he said, “Having a sick child can make you doubt yourself. Don’t let it. You’ve done the right thing.” It was then that I realized I was still jumping to conclusions that were far more serious than the end diagnosis (and thank God for that!); I was beating myself up for not taking her stomach pain seriously enough, for not taking action the night before even though if I called the doctor over her every stomach ache, it would be a daily, unnecessary occurrence.

            Rare diseases are tricky enough. Having a child with one is an emotional entanglement of worry, self-doubt, guilt, fear and feelings of inadequacy. I’d rather rush to the hospital and find out it’s simply a symptom of her hEDS than not act on it at all. But I also can’t rush down there each time something comes up. I feel jerked around by her EDS at times, like it’s playing a game and I can’t win no matter how hard I try. There’s one thing I know for sure though: that my daughter is uniquely wonderful; that’s she’s strong, creative, funny, intelligent; that she’s loved; that she brightens my life and many others. Her having a rare disease is a tiny, miniscule part of who she is. But it makes up a huge part of my emotional focus as her mom.

 

 

School’s Touching Accommodations

If you are a parent, you know the feeling of pride that comes from watching your child(ren) perform in a school play or sing at an event; you’ve experienced the joy that occurs when you visit the classroom or engage in school activities with your child(ren). But, imagine if you had to stay outside the classroom door or couldn’t make it into the auditorium to watch the show. Imagine the feelings of guilt, sadness and separation you’d feel if you couldn’t participate the way every other parent was able to participate. Unfortunately, this happens more than you may think. When a parent uses a wheelchair, or doesn’t have the ability to climb stairs, there’s often no choice but for them to miss out on various aspects and events in their child(ren)’s life. For no other reason than structural inaccessibility, some disabled parents are placed in the awkward position of not being present in their child(ren)’s affairs. I’ve had to hear about my daughter’s classroom activities from other parents and it left me feeling embarrassed, guilt-ridden and upset. I’ve heard other ‘wheelie’ moms express anger, frustration, grief and humiliation at having to miss out on things because they couldn’t gain access into the venue.

When my daughter first started kindergarten at her new school, there were plenty of handicap parking spots available, but none were van accessible. The principal and school security officer both told me to simply make my own spot or take up 2 of the handicap spaces. So, for the first few months of school, that’s what I did. The school is extremely wheelchair accessible once inside – the entire layout of the lower and upper floors flows together via ramps and an elevator is in place. I’m able to go anywhere inside the school I need to go. But there was only one entrance that was level for my power chair to go through and it’s located at the main entrance, which is two schools down from the elementary school (the school itself contains preschool through high school). I would try my best to park near the main entrance whenever I arrived for school activities and then make my way through the high school and middle school to the elementary wing. I was able to attend all her class parties, her performances and the like. It was wonderful, and I had no complaints. I was simply happy to be able to go and be!

During the 3rd month of fall semester, the principal told me they’d put in a van spot for me right by the elementary school! I was excited and felt quite fortunate that the school had made accommodations for me. The only problem was that once I parked, I still had to trek up to the main entrance to get into the school. They had not realized there wasn’t a way into the elementary school for me. I told them it was no big deal (and this was true but on rainy days and as the weather got colder, it wasn’t the most ideal).

 

Right before Christmas break, I arrived one afternoon to pick up my daughter and a couple of faculty members approached me. They asked if I’d seen what the principal had made me. Apparently, the principal had decided not to waste time waiting for approval and necessary funds from the budget – he’d spent that day building me a ramp into the elementary school!! I was moved to tears! It sent me the message that I was just as important as the able-bodied parents; that I was wanted and needed there; that I was respected. They recognized my need to be with my child. My daughter’s school made it possible for me to have the same access as the other parents. But, it was what the Headmaster said to me that really meant a lot: he told me yes, it was done for me, but that it would be there for other parents like me in the future.

So, it seems that while they have given me two huge gifts in the form of making the building more accessible, I in return have given them a gift – the gift of awareness. I’m so thankful for all of this!! Using a wheelchair should never prevent me from being present in my daughter’s life but the reality is that it has. And there will be more times in the future that it will. But, as society becomes more aware of the existence of parents with special needs and is educated about the need for accommodations, disabled parents will gain equal access in places such as schools, gyms, auditoriums, etc. There will be a day when we no longer experience our child(ren)’s lives vicariously but are fully engaged as we are meant to be.

20171212_160302