Mommy’s Nervous About Kindergarten, too!

Today, my daughter began Kindergarten. For the past several days, she’s expressed the typical fears and nervousness about starting at a new school with a new teacher in a new building with new friends to make and so on…. We talked about her feelings and I tried to help calm her anxiety by pointing out all her amazing qualities, her strengths, the fact that everyone in her class was feeling the same way and by praying with her.

It wasn’t until we were walking (well, I was rolling…) down the hall that I started having my own worries and fears. Kids stared at us and I received the usual range of facial expressions – some children smiled sweetly, others looked at my chair with terror in their eyes and others frowned at me. The ‘peekers’ were there, too – the little kids who slide behind their parent and glimpse out at me shyly. While this is part of my normal, every-day life, it got me thinking about the days ahead for my own little one.

As I got into my van, I wondered if my daughter was in her classroom fielding questions about me. Was she having to explain why I’m in the chair? Was she trying to answer a multitude of questions about our lives instead of playing with the purple play-doh that had been set at her desk? I worried she was spending time advocating for me instead of making friends. Plus, she can get quite loud and vocal since she’s very protective of me: there was an incident at her last school where a boy laughed at a disabled character in a story book and my child screamed at him, “Disabilities are NOT funny!” While this is a trait of hers I’m quite proud of, I don’t want it to distract from her enjoyment or engagement in the classroom, especially a new class.

I know that what makes up our ‘normal’ are the stares, the comments, the whispers, the looks, the questions and what-not. I know none of this is new to either of us. Perhaps I’m worrying for no reason (most likely the case!) but I simply want my daughter to focus on and enjoy her first day of ‘big kid school’ and not have to automatically educate a class full of five-year-olds.

The guilt, the illogical but real guilt is back today. My differences have the ability to make my daughter different. While growing up with a disabled mother has impacted her positively, I worry it can have negative consequences as well. I hope she’ll be treated like any other child by the kids at her new school. I hope kids at this school will be just as easy-going as at her preschool – but these kids are older and this is a new experience for her as well as for me as a mom. Will my daughter be bullied because of me? Will she be shunned?

So, there it is – I’ve got the “First Day of Big Kid School” jitters, too. They’re probably all just us unfounded as my daughter’s fears but they’re real to me just like they’re real to her.

*So, I just picked her up a couple of hours ago and guess what? She had the best first day ever! She made “SIX new best friends” and apparently, none of them asked about her mom’s wheels!! What were we both so worried about??*

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Within Reach…

What do we do when neither she nor I can reach something?? Work together because everything is always within reach when love stretches the possibilities! The only thing that’ll hold us back is US! We make a great team!

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Product Review – EazyHold

EazyHold the Universal Cuff Grip Assist has been a very helpful addition to my treasure trove of modifications. I came across EazyHold on a social media site, where the creators were holding a give-away contest. I was one of the winners and my adult pack of EazyHolds arrived shortly thereafter.

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The package contains 5 different sizes of the Grip Assist, a company business card and a short description of the product along with ideas of ways to use EazyHold

EazyHold comes in 5 different sizes and attaches to a wide range of household items. Once fitted to an item, such as an eating utensil, the user inserts their hand into the grip and can then hold onto the utensil without having to grasp the item at all during use. It’s great for people with limited to no ability to grip things as well as for people like me, who can’t hold onto certain things for a long length of time.

 

There are seemingly endless items of daily use with which an EazyHold can be attached. The different sizes come with varying degrees of length and flexibility. The largest one even fits onto my home phone handset. I’ve currently got the smallest EazyHold attached to a pen at my desk. This product, of which a patent is still pending, has allowed me to use my hairbrush and toothbrush without experiencing pain in my hands and fingers; lessened the probability of weakness or joints ‘locking up’ while I use certain things around the house; and has decreased the risk of me dropping things. I highly recommend it!!

I can also tell you how nice the inventors of EazyHold are. They have contacted me a few times by email and have encouraged me to stay in touch with them. They seem to truly care that their invention is making a positive difference in the lives of its users. I’ve been very impressed with their friendliness and concern!

 

If you have trouble gripping things or tend to drop things while you’re using them, I’d strongly suggest you get in touch with EazyHold!! And, if you’re the parent or caregiver of a child with grip difficulty, you’ll be happy to know that EazyHold also offers children’s packs!

 

You can find EazyHold at their website: eazyhold.com

They are also on FaceBook: facebook.com/eazyhold

Why Play Dates Make Me Nervous…

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My daughter is five and has quite the social life! She’s made many friends from various facets of her life and my life combined – school, church, sports and recovery meetings. She’s the type of child who writes an invite list to her birthday party that’s longer than her Christmas wishlist. Needless to say, she is asked to join friends for play dates on a pretty regular basis.

This is where Mommy becomes more of a detective than parent. This is when I bust out with my list of questions for the parent who’s house I’ve never been to. I have to consider everything about the structure of their home and it’s accessibility to me before I can even decide if we’re able to go or not. Are there stairs leading into their home? If so, are there hand rails? Is the house all on one level? Are there carpets? Rugs? Toys or clutter of any kind in the middle of the floors that I’d need to try to navigate around? Is there an animal that might jump on me, causing me to lose balance? Or could that animal be so small and fidgety that I trip over them or can’t process all their movements in order to walk around it? What’s the bathroom like? Is there somewhere I can hold onto while in the restroom?

If you think this list of questions is long, think also of how I feel asking all of them: For starters, I never truly trust the answers that are given. I may trust the person completely in every other way, but able-bodied people do not have to think like I do. I myself never thought this way until I became disabled, so I surely can’t expect others around me to understand my needs immediately. I get nervous that something’s being left out: that small step up into the foyer; those 2 tiny stairs up the sidewalk that the person forgot to mention and oh, there’s no railing there either; the fact that the bathroom is on the second floor. I become concerned my daughter will be so excited the day of her play date yet when we arrive at her friend’s house, there will be some barrier preventing me from entering the home and we’ll have to either move to our house (which is way less exciting because other kids’ toys are always the most fun to play with!) or reschedule for another time and decide where to meet that’s accessible for me. And, there have been those instances where we’ve not made it into the house, even though I asked the litany of questions. I also feel guilty and can’t even pinpoint why – some of it is because I wish that we could just go like other families do; I wish I could be a ‘normal’ mom for my little girl. I have guilt when we must meet at our house, knowing my daughter enjoys playing with toys that aren’t hers. Yes, kids often bring toys from home to share, but it would be nice if my child could get out of our home more.

I feel like I’m interrogating the other parent; as if I’m making sure they have the “right” kind of home. I worry they’ll be insulted by all my questions – here they are, treating me like any other mother (which I deserve to be treated as, by the way) but I’m asking them tons of structural questions and focusing on my differences. I feel like it may seem I’m making a big deal out of a simple play date – “Wanna come over and play?” It’s a ‘yes’ or ‘no’ question! Not an opportunity to ask for the blueprints of the person’s house!! But, it’s also what I must do in order to know what my answer will be. There’s a small part of me inside that whispers quietly, “This is okay. Don’t feel guilty. Don’t stress out. God didn’t make a mistake in making you nor making you a mom.”

That wee small part of me also insists that it’s just a play date. The important part isn’t WHERE the playing occurs but the HOW (with enjoyment and happiness) and WHY (because my daughter is a wonderful, funny, compassionate friend) and also that it IS happening. When she’s twenty, I’ll ask her if she remembers having play dates with friends – I bet her answer will be along the lines of “Oh, yes! I had lots!” instead of “Yeah, but they were always at my house.” She’s got the best attitude about everything… even though her mom’s attitude can be saturated with worry, anxiety and guilt! Guess that’s just another thing that proves I’m like any other mama!

When my Limited Body Was No Match for the Limitless Love of my Daughter

My daughter is only allowed to watch a small number of television shows (yes, I am one of those parents). One of her favorite shows is Paw Patrol; I don’t use the word favorite lightly – she owns Paw Patrol dolls, pajamas, figurines, vehicles, stickers and don’t forget the light-up tennis shoes!! Nearly 4 months ago, I saw an advertisement stating that Paw Patrol Live! was coming to our city for the first time ever. I jumped on the chance to buy tickets but was faced with a decision: I usually use my power chair in public and especially at big events like this; it’s safer for me and ensures that I’m comfortable during the show but also don’t suffer pain & fatigue afterwards. However, this particular theater only has wheelchair seating in the very back – WAAAAAY back. Should I get tickets in the orchestra section where we’d be close to the stage and have a great view? Or should I get seats in the wheelchair section like I normally do? It seemed like a difficult decision to make… for about 2 seconds. I wasn’t going to Paw Patrol Live! for me – I was going so my daughter could be filled with amazement, joy, excitement and so that I could witness these feelings as they melded across her face. Yep, orchestra section it was!! Besides, I’d just ordered a sturdier, safer cane and was still walking pretty well for the most part. Some physical pain & discomfort were a small price to pay in order to see my daughter enjoy the show up close. I thought, 4 months ago, “I can do this! She’s worth it!”

Did I mention that was 4 months ago? Four long months in which my body regressed further in unexpected haste. When the day of the show came, I was walking very little, even at home. The only place I don’t take my chair to at all is a meeting house because I’ve yet to measure the doorway to make sure it will fit. I hadn’t realized I’d be this further into my illness & disability when I purchased the tickets. I’d felt so sure of myself then; when showtime came, I was much less confident.

Tickets in hand, excitement in our hearts, smiles on our faces, we went to the theater. My mother drove us so I didn’t have to deal with parking. We walked into the lobby where there were NO seats available! Not that people were sitting in them – the lobby was simply void of benches or rest areas!! I stood with my daughter in line to enter the theater and gave myself an internal pep talk, trying to feel capable of the physical task before me. When we got into the theater, I realized I’d gotten us FANTASTIC seats!!! But fantastic seats were more than halfway down the section and in the middle of the row – go mom! My sweet little girl waited so patiently as I made my way down the steps to our row, urging me to “go slow,” “don’t let go of the railing” and to “be careful.” I made it!! Then we awkwardly walked to our seats (well, she walked a lot less awkwardly than I did; I took out several adult feet and some small toes with the tips of my foot base!).

The show was AMAZING (and I strongly urge families with young children to see it)!!! Our seats were INCREDIBLE!!! The joy and awe on my little one’s face was worth every step cautiously taken!!! We had a BLAST!!! 

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Afterwards, I made it painstakingly up the steps, back out into the lobby to wait in a line for slightly overpriced merchandise (because we needed one more Paw Patrol doll, of course!!) and then waited on my feet for nearly 15 minutes before my mom pulled up to whisk us away. My lower body literally felt like it was on fire; I ached like I hadn’t in a long time; my toes & feet were numb but tingling painfully yet we had the time of our lives and inside, I couldn’t have felt better!! I don’t know if I’ll be able to do something like that for my daughter again and if so, for how long. But it was done the other day and I’ve cried while thanking God for the ability to walk, stand and go up & down stairs even though it hurt and was hard. I know one day, I wont be able to do any of that any longer so I’m grateful for every movement I CAN make and every ability I still possess.

My ability to love completely outweighed my inability to move like I once did – how can I not be thankful for that?!?!

Why is Mama Modified? (Getting to Know Me)

There’s a saying a like: I plan; God laughs.

 

This certainly feels applicable to my life. I had everything planned out; thought I knew the direction I was going; assumed my goals were attainable through hard work and dedication; fancied myself the director of my own show. I was finishing up my thesis for a Masters degree in Early Childhood Special Education with an emphasis on the medically-fragile/low-functioning population. I was teaching for the public school system in my city as a Special Educator. The unraveling of the thread of my future began with a headache. I’d never been prone to headaches before, even when sick. The headaches persisted and worsened. Every day brought on more pain. Over-the-counter medications were ineffective in treating the throbbing that traveled from the base of my neck to my eyes. Then came the pulsing sounds; a constant whooshing noise that matched the rhythmic beat of my heart (I would later find out I was hearing my own spinal fluid sloshing around in my brain. Pretty frightening!). I had no idea what was causing this new development and was already beginning to make the rounds of various doctors and specialists to try to find out what was happening to my body. No one had an answer for me, even after CT Scans and MRIs, all of which were normal. I was given multiple narcotic pain medications as the headaches increased in intensity to what was assumed to be migraines. Even taking dilaudid and morphine did nothing to lessen my agony. Then came the day I awoke without peripheral vision nor the ability to turn my head at the neck. Over the course of 2 1/2 months, my condition worsened; my speech became slurred as if I’d suffered a stroke; movement of my limbs was difficult; my tunnel vision regressed to mere pinpoints of sight as I stared at the faces of doctor after doctor, begging for a diagnosis, a treatment, an answer.

I’d already taken leave from the school where I taught and had stopped writing on my thesis. Finally, the night came when I went completely blind. That was the turning point. I was taken to the emergency room of a local, well-known hospital. Again, the ER staff took a CT Scan of my brain which came back with no abnormalities though what I was experiencing was far from normal. The director of the ER was called in. Although it seemed that he was the only new person to enter the room, I would soon realize that God had stepped in as well. This doctor had written his dissertation on an extremely rare neurological disease called Idiopathic Intracranial Hypertension. He performed a lumbar puncture to gauge the cerebral-spinal fluid pressure – the only diagnostic tool used to recognize IIH. Normal CSF pressure is between 8-12; mine was 49. Six vials of spinal fluid were drained via the LP, and I immediately gained tunnel vision back, though it would take an additional 1 1/2 years before my peripheral vision returned. I began seeing a neurologist and neuro-ophthalmologist and taking a medication that would help my body rid itself of the fluid. After one year on the medicine, my IIH went into “remission.” However, my journey into a new way of living was not over.

There is no known cause of IIH nor is there a cure. It affects only 1% of the world’s population. For a reason unknown to the plethora of doctors and specialists I’ve seen over the years, after 28 years of working efficiently, my body stopped absorbing its spinal fluid, causing it to build up in and around my brain and spine. I was fortunate to have responded to the medication; to not have suffered a seizure or stroke due to the increased spinal pressure; to not have had a heart attack as my body worked over-time to compensate for the increased pressure in my brain and spinal column; to gain my full sight back with only a tiny blind spot in the peripheral of my left eye; to not have required surgery on my eyes or to place a shunt in my brain to drain the excess fluid; to not have died. The lasting effects of the IIH for me were to be a physical regression of mobility, coordination and balance. At the time of my diagnosis, I was a heavy drinker and was actively engaged in an eating disorder that left me malnourished and dehydrated – a combination of maladies that my brain and body simply could not deal with. Shortly after my initial diagnosis, my spinal column began to deteriorate; a disorder that mimics degenerative disc disease. I’ve since been diagnosed with several other neural-muscular disorders as well as neuropathy in all four limbs. Over time, I’ve lost (and will continue to lose) my ability to walk and perform various other physical activities that my once healthy, able body was capable of.

I had to withdrawal from the graduate program a mere 3 months prior to graduation. I’d been so close that my name was already printed in the programs for the ceremony – a ceremony I did not attend. I became dependent on government assistance; something I’d never foreseen myself doing. I had a home-health nurse and physical therapist. When I was able, I went outside my home for PT and struggled to walk again. I actually walked for 15 months without the use of any aids until I started falling again. A sort of backward cycle began – I’d gone from wheelchair to rollator to crutches to a cane and now was reversing the order; in need of a cane one day and before long, back on the rollator before sitting down again in a chair. I now use a power chair about 80% of the time. The cane I use to walk around the house and travel short distances has a wide foot-base to keep me as steady as possible. I’m not able to self-propel any longer but keep my manual chair for emergencies.

My plan was to become a teacher. Instead, I’d unknowingly been a student of the children in my classroom. Because of them, I’d witnessed strength, determination, motivation and perseverance and knew I could apply it to my recovery. I’d also learned about all the different programs, services and assistance for the disabled community. I’d helped children and their families modify their environments in order to be more accessible and accommodating depending on the level of care needed.

My plan was to live out a life I was in charge of. God simply smiled and showed me how to be grateful for every moment and each movement; to rejoice in the things I’d once taken for granted; to rely on Him instead of myself. I’ve also been blessed with an amazing daughter! Before age 28, had someone asked me if I could live my life as a disabled person, I would have said, “No.” Had anyone asked if it were possible for me to be a disabled parent, my response would again have been, “No!” But God would’ve giggled and said, “The answer is yes! You can do ANYTHING with My help!” And that is the correct answer!!

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*Post can also be read at: https://rollingwithspinabi7.wixsite.com/take2

More Mama Modifications

So this arrived today:

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To you, it may just be a cane with a foot-base. But to me, this cane represents many aspects of my adapting to new challenges. It represents my letting go of pride and ego – it took me weeks to finally hush the voice inside my head that insisted I’d look like an old lady; it finally occurred to me that acquiring this type of cane would not turn my hair cloud-white, cause my shoulders to stoop or wrinkles to set creases along the planes of my face!!

This represents my acceptance that my body’s gotten a tad worse; balance is more difficult; walking can be precarious at times. And if my old cane fell while I was alone? Well, the challenges that caused me were well worth taking a closer look at my need for more efficient safety. There’s a grieving process that occurs each time my body presents me with new limitations. Breaking through the denial can be cumbersome and unpleasant. Yet, it’s necessary if I’m to continue living the life God’s blessed me with. Therefore, this cane (or any new mobility equipment) is symbolic of the respect and love I have of myself since I’m taking steps necessary to stay safe and well.

It’s not just me, however. There’s a wonderful, caring, funny, helpful, smart 5-year-old who’s become increasingly worried about me falling… and possibly dying. As many know from my previous blog post, my father passed away after falling in his home. My daughter knows I’m prone to falling and has connected his death with the possibility of mine. Lately, I’ve watched her struggle to contain her anxiety as she watches me walk about the house. She’s wanted to review the plan we have in place in case I do fall. We’ve practiced “dialing” 911 on the house phone and on my cell phone; what to say to the dispatcher; the fact that I may be taken away in an ambulance; whom she might stay with if I were to need overnight care for her. It’s been heartbreaking, as her mom, to need to keep reiterating that her grandfather and I have different illnesses; that mine will most likely never kill me; that I have great doctors who monitor me and I take my medicine; that even if I do fall, it doesn’t mean I’ll die, too. Telling her she doesn’t have to worry about me does little to alleviate her fears. Walking with an aid that keeps me more balanced and stable can do much more to relieve her stress.

To her, my cane represents less worry about her mom. It represents the ability to not have to agonize about emergency-plans. It symbolizes a more care-free, happier childhood for her. As a mom, that’s priceless and something I’d be willing to adapt to any modification for her to experience!!

For both my daughter and me, my new cane represents us moving forward in life – literally and figuratively. We are always adjusting, adapting and modifying our lives to fit with what my body can handle at any particular moment. As a parent, there’s a guilt that she’s being dragged along this path with me. Yet, I see it’s made her much more flexible, accommodating and accepting of changes that pop up in her world, from school to play dates. If you see us out-and-about, we’ll be walking a bit more slowly and much more carefully. But chances are, we will be quick to smile and share in the joys of life with you!! So, please stop and say hello… and don’t worry about me falling!!