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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School’s Inaccessibility Causes Bathroom Blunder

            It was meant to be a very special day at my daughter’s school. And, for the most part, it was. Her school recently had a day where the students were encouraged to invite friends and family members to watch a short concert and enjoy a reception afterwards. To my knowledge, I’m the only parent/caregiver in a power chair. I’ve always been impressed with the school’s accessibility. The floorplans are laid out where everything flows and if there’s a dip in levels, ramps are in place. There is also an elevator connecting the two floors. Until the day of the concert, I’d assumed the school was completely wheelchair accessible.

            I’m on a medication that acts as an extremely heavy diuretic in order to flush my body of its spinal fluid (my body no longer absorbs its spinal fluid so the danger is its ability to build up in/around the brain and spinal column). During the first song the children sang, I started feeling as though I needed to go to the bathroom. But didn’t want to make a scene leaving as I was sitting in front of the bleachers and would also have to get my Service Dog up and out with me. So, I sat there thinking I’d just make a quick getaway when I could. But each song led into another until I was hurting, I had to pee so bad! Finally, the principal dismissed the students and families and we all bled out into the hallway. I quickly went to a bathroom but upon opening the outer door, I realized I couldn’t even get my chair through. So, I backed into the hallway and headed towards another bathroom. This time, my chair got in, but there were no stalls big enough for me to use (not only needing to fit my power chair but also my Service Dog). I left that bathroom and saw some kids in the hallway. I asked them where there was a handicap bathroom and they pointed me in another direction. I got so excited until I realized the stall was long but not wide, meaning I’d drive up right in front of the toilet and need to spin around to use the bathroom – impossible.

            I grew increasingly uneasy, not just physically but mentally and emotionally. How hard was it to find an accessible bathroom? Why was this simple need so difficult to fulfill? I knew of one more bathroom I could try so quickly made my way there. And, there it was! A stall big enough for me and my Dog!! I pulled up beside the commode and shut the chair off, relieved to finally be able to use the bathroom! And then I reached for the transfer bar… that wasn’t there. My heart sunk; my face fell. I turned my chair back on and left the bathroom, tears forming in my eyes. In the 15-20 minutes I’d been searching for a place to pee, the other women who’d been lined up at different bathrooms were no longer there, having been able to easily satisfy a basic human function. I felt alone and inadequate, separate and different.

            I went to the main office and as I began explaining my dilemma to the secretary, I started sobbing. My pelvic area hurt; my pride hurt; my dignity was aching as well. She didn’t know what to do so she called the school nurse. The nurse came to the front office and tried to calm me down. I was told that she could help me use the bathroom but that was not the solution I was looking for. She told me she did this all the time when she worked in hospitals; I responded that I wasn’t in a hospital; I’m an adult mother who uses the restroom by myself and this was unacceptable to me. But there obviously was no other way for me to relieve myself so I went with the nurse down the hallway, passing students and their guests, towards the bathroom. I felt humiliated. It seemed like it was glaringly apparent to everyone who saw us enter that I’m incapable of using the bathroom unaided. That couldn’t be farther from the truth. It wasn’t that I had limitations in this area; the school did. But I wasn’t going to stop each person I passed to explain the situation; I simply swallowed my pride, my dignity, my capable self and let the nurse come into the bathroom with me.

            What ultimately had to happen for me to go the bathroom was the nurse not only helping me stand but her pulling down my pants and underwear while I held onto the top of the stall. She then had to pull my underwear and pants back up for me and help me back into the chair. To say I was mortified is putting it lightly. This should not have happened. There should have been transfer bars in the stall to allow me the dignity to use the bathroom privately just as every other student and adult did that day. My daughter and I are already different enough, and I was heartbroken that students had seen their nurse go into the bathroom with me – I didn’t want my having to pee end with negative consequences for my little girl. Kids can be cruel. Furthermore, the kids see their parents and adult friends in roles of authority, control and an all-around sense of what being a grown-up means. I want them to see me that way, too. Because it’s true – I am in a position of authority. And while we as adults don’t truly have control, it’s a natural assumption of a child to think that we do.

            Once I finished using the restroom, I had missed nearly the entire reception. I found my daughter and sat with her for about five minutes while she finished eating. She wanted to know where I had been and why I hadn’t joined her until that moment. I told her I had to use the restroom and she exclaimed how long it had taken me. I didn’t have the heart to tell her the nurse had to help me; she probably would have been confused as to why. She knows I can go to the bathroom by myself.

            I plan on meeting with the Dean of students. I intend to discuss this event with him and suggest necessary changes. I want this to be a moment of education for the school. This was not something that happened because I’m disabled. This happened because the school does not have the adequate and acceptable structures in place for someone like me. I may be their first disabled parent but I’m pretty sure I wont be their last. And I don’t want another parent to feel like I felt emotionally, mentally and physically that day. I don’t want them to miss out on an activity with their child because the school is not equipped for them.

 

Health-care Workers Skepticism Can Have Dire Consequences to Patients

I am writing this in hopes that others with rare disease(s) recognize the importance of speaking up; and health-care professionals of all types realize the importance of listening.

 

I found myself out of one of my medications and had no refills left. Out of the plethora of meds that I take, this is the one that keeps me alive – I have Idiopathic Intracranial Hypertension, a rare disease which affects only one percent of the world. For an unknown reason, my body stopped absorbing my spinal fluid, so it builds up in and around my brain and spinal column. Fortunately, I am one of the 50% of patients who respond to this medication, which was the only FDA-approved med in my state at the time of my diagnosis nearly ten years ago. I went into ‘remission’ after one year of taking the medicine. Remission is a commonly debated term among the IH patient community as well as with doctors and specialists. For my purposes, I use it to describe the ceasing of my IH symptoms and leveling of my spinal pressure while ON medicine. However, in 2015, my CSF (cerebral spinal fluid) levels began to rise again, causing decreased vision, headaches and pressure within my head. My dosage was increased but I’ve since lost some vision in my left eye and still deal with headaches and pressure at times. Without the medicine, my CSF would increase until I experienced blindness, seizures, stroke or death. So, the medicine literally keeps me alive!!

My pharmacy contacted my doctor’s office on a Friday about refilling the medication but got no response. The pharmacist was kind enough to give me an emergency supply to last until Monday morning. Rx supply When Monday came, I contacted the office twice through an online messaging system, imploring them to refill my prescription that day as I was out of the med. By the afternoon, my pharmacy still hadn’t received an order to fill so I called the office. The nurse asked what I needed, and I explained to her the urgency of having the prescription called in that day. When I mentioned what the medication was used for, she replied with sarcasm, “It drains your spinal fluid?” I said, “Yes, I have Idiopathic Intracranial Hypertension.” She said, “Huh, never heard of it. Well, I’ll send this to the doctor and tell him you say it’s urgent.” I got off the phone feeling hurt, frustrated and angry. Just because she’d never heard of my disease didn’t make it nonexistent! Her skepticism could endanger me! Sure enough, I called the pharmacy Monday evening to learn that they’d still not received an order.

So, Tuesday morning, I called the doctor’s office again in a near panic. I learned from the young lady who took my call that the nurse had not sent the message to my doctor but to his nurse and no action was taken! I again repeated how important it was that I begin taking this medication as soon as possible and why. I was told that she was marking it urgent and that if the pharmacy had not received an order within an hour, to call back and ask for her specifically. Low and behold, I was finally listened to! She listened and acted, and I had my medicine in a few hours!!

I thought about what would have happened had I not been assertive in advocating for myself. I thought about patients who may not know they have that right or feel confident enough to speak up. But, when people have rare diseases, there are medications we take that literally mean life or death for us. We matter! We’re important! We deserve to speak up for ourselves! We deserve to be listened to! We deserve to LIVE!

And, how about the health-care workers? The ones who aren’t knowledgeable about every rare disease? The ones who dismiss patients as hypochondriacs or dramatic instead of listening to them and taking them seriously? This kind of attitude can cause much harm in the life of a rare disease patient, not to mention their family.

So, if you have a rare disease like me, SPEAK UP! And if you work in the health-care system, LISTEN UP! Let’s start giving CARE to our RARE!