A Motherhood Milestone You May Not Relate To

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            Two nights ago, I reached a milestone. I doubt it’s one many other parents reach. I doubt it’s a milestone other people would even consider. But for me, it was major! My daughter is 7-years-old and has had many sleepovers at other people’s houses. I can’t even begin to think of how many parents have hosted her in their homes. Yet, not once has she had a friend stay over at our house. It’s not that invites haven’t been given; nobody’s taken us up on them. Most often, instead of the friend staying here, the parent(s) will offer to have my daughter over.

            But the other night, she had her first friend stay at our house. I was so elated and grateful when my friend asked me if I would mind her young son staying at our house. To be honest, I was also shocked that someone was finally trusting me with their child overnight. Her son and my daughter attend the same school; I’d be picking them both up, have her son here overnight and then take them both to school in the morning. I thanked her for her trust profusely and told her it was the first time someone was letting their child stay at our house. She commented that maybe it was due to people not wanting to ‘burden me’ because they know I have two chronic illnesses on top of my physical disability. Yet she also made the remark that people simply aren’t aware of all that I’m capable of; they make a judgement call based on their assumptions and don’t give me the benefit of the doubt. She said she knew I could do it and wasn’t worried in the least.

            I’d often wondered if the reason we hadn’t hosted another child overnight was due to my illnesses or disability. It had made me feel a little inadequate, less than and different to realize people were quick to let my daughter stay with them but never to let their child stay with us. It’s a feeling and a situation I doubt most parents experience unless they’re like me. People frequently comment that they ‘don’t know how I do it,’ ‘will help me whenever I need it’ and ‘are inspired by me’ for being a disabled single parent. But what they don’t understand is that I’m not an inspiration; I’m just a parent like them; that I don’t know any other way to do and live my life except this one so to me, it’s not harder than anyone else’s life. Yes, I need help from time to time, but everyone does. Every parent (especially single parents!) needs a break now and then. It has nothing to do with my disability. What other parents don’t realize is that I can’t imagine how they do what they do! I get worn out just watching some of my friends run around on their healthier legs or working full-time then coming home to take care of their house and family, most often with multiple children. It’s not about the life we live or how we’re living it; it’s about our perspective, which we only have through the lens of how our own lives work.

            So, back to the other night: I picked the kids up from school and we chattered away excitedly in the van on the way home. They both had homework so that came first. Then I fed them dinner, let them play for a while and got them both ready for bed – teeth brushed and all! I read two books, sang them a song and left the bedroom. The next morning, I laid their uniforms out, made them breakfast, packed them both lunches and drove them to school… on time. Doesn’t that sound like what would happen in a nondisabled person’s home? Doesn’t that seem so bland, so common, so uninspiring?!?

            My parental milestone flew by without flaws nor fanfare but to me, it was dazzling! It made me feel like I belonged to the parents’ club. I felt not only trusted but respected. Because my friend and her husband didn’t hesitate in allowing their son to stay with me; they didn’t question me as to whether it would ‘burden’ me or be ‘too much.’ They treated me like they do anyone else; they simply saw me as another parent. And sadly, if more of my friends and parents of my daughter’s friends would see me this way, treat me this way, I never would’ve had a milestone to begin with. It wouldn’t have taken 7 years for someone to trust me with their child; to know that I’m just as capable as any other parent; to see me as they see themselves.

Kai blog pic

Playtime for the kiddos!

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Back in Action…

So, it’s been several months since I’ve written anything. There have been 2 main reasons for this; one being positive and the other, not so much. As an optimist, I’ll start with the good news! I HAVE GONE BACK TO WORK! Yes, I now work for a Treatment Center specializing in drug and alcohol rehabilitation. I am thrilled – I’d wanted to work in either the field of recovery or disability. I thoroughly enjoy my job and get along splendidly with my coworkers. The facility also made physical accommodations to make my office and the restrooms more accessible for me.

The other reason I’ve not been writing as much is due to regression in my neck. I will be having surgery in mid-September to take out 2 discs. I’ve been in a lot of pain and also deal with tingling & numbness down my right arm into my hand.

I want to add that since I last blogged, I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). After my diagnosis, my daughter was also diagnosed so we’ve been having to make some lifestyle changes. I reveal this because it may sway what I write about in the future.

Other than all of that, I’m hoping to catch up so-to-speak. Hopefully, you’ll be reading more from me, ModifiedMama!

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.

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