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!

Rollin’ Forward

So, welcome to my new website! I’m really excited and hope that you as readers/followers and I will gain much from this site.

The decision to begin a website came about as another transition I’m making into the world of disability. Since becoming sick 8 years ago, I can’t tell you how many times I’ve cycled through the grief process. I’ve had to adapt to and accept each new phase of my illness & disability as my body’s steadily declined. I’ve coped through humor, faith and hope and am now entering a different phase – one of desire to educate & advocate, giving another voice to the disabled community to promote awareness and gain accessibility.

As a disabled parent, I find there are limited resources for my population. Public places that I’ve needed or continue to need access to do not meet ADA requirements due to what I consider to be inconsiderate & insufficient regulations. Some places claim ADA accessibility but are not, leading me to believe that businesses are not strenuously monitored or regulated.

My future goals are to advocate for stricter and more suitable ADA laws by lobbying at the Congressional level. I’m also looking into the Miss Wheelchair Tennessee pageant, as that would broaden my platform and help me reach more people.

I look forward to continuing to blog about being a parent with special needs and am excited about using this site to further awareness & education for all of us in the disabled community! Feel free to share your comments with me!! And, thank you for visiting my site!!!

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Please Welcome Back… Lazy Lylly!!

Oh, my! Not a single blog post since February??!!?? Lazy Lylly at your service!!

And, it’s not like tons of things (internal monologues, actually) haven’t been running through this nutty head of mine!! I could’ve posted plenty in the past 5 months, but alas, such is the life of a lazy person!! Every time I thought of a new blog to post, I told myself I’d take time for it tomorrow – and you know exactly what the saying is: “Tomorrow never came!” Well, it is TODAY! And, I have something to say; not much, only a little, but something nonetheless.

The past 5 months have been wonderfully chaotic, as only a single-mom-with-a-chronic-illness-and-disability-who’s-trying-to-go-back-to-work-and-still-be-involved-in-a-12-step-fellowship’s life can be!! My body has continued to regress and I’ve been back in Physical Therapy for what the doctors are hoping are only “weak hips,” though the PT hasn’t done much of anything to relieve the immense pain I’ve been in. I’m thinking I’ll have to end up having x-rays and an MRI to determine what is really going on – Oh! The joys of being scanned and shoved into high-tech machinery!! 

Because of the pain, I’ve been having to use my power chair nearly 100% of the time while at home and have even taken it to certain events so that I could allow my body to rest and relax, reaping more joy out of the occasion. I still refuse to take any narcotic pain medication, so using the mobility aids at my disposal has been the most prudent thing I can do at this time.

I’m still not working yet, which has been a cause of frustration. But, I’m trying to have faith that God simply has something perfect for me up ahead and I have to allow not only His will to work in my life but His timing. I’m saving up slowly but surely for a wheelchair accessible vehicle to transport my power chair (VocRehab denied a conversion for me), since it seems as though I may end up in the chair sooner than I had planned – although why I even bother to “plan” for a prognosis not even the multitude of doctors and specialists in my life can give a definitive time-frame for, I have no clue!! Guess it’s a part of my insanity!!

On a truly upbeat, don’t-wanna-miss-this-ray-of-sunshine, positive note: I go back to my neuro-opthamologist in a month and will find out if my IH is back in remission! I think it is and he thought at the last visit that it seemed to be looking that way, but wanted to be 100% sure. So, in a few days, I’ll be going back to the original dose of Diamox that I was on before I got so sick again. Based on how my body/brain react to that change, we’ll know if I’m in remission or not. Prayers and positive vibes my way would be much appreciated!!

Another awesome bit of news is that I’m only $1,700 away from my fundraising goal in order to go to team-training with my new Service Dog!!!! I’m so close!! I hope I can be in one of the 2017 classes and bring my new furry family member home next year!!

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I will make every effort to post a blog before another 5 months go by!! My ego insists that the online community cannot survive without news about my life or knowing what my opinions, thoughts & feelings are about certain subjects!! Until I post again, I wish you well! Thank you for reading and for being so patient with me!!