Letter To My Chronic Illness

Dear IH,

I need to break things off with you. While I realize that we’ve been together now for 8 years, I’m feeling like the time has come for us to call things off and go our separate ways. You see, the problem is your insistence on dominating nearly every aspect of my life. I can’t allow that any longer.

You demand attention by bullying my body with either headaches, migraines &/or increased cranial pressure during times that I’ve promised my young daughter that we’ll go to the park, the library or attend a birthday party. You beat me into a state of exhaustion in which the bones in my body literally feel too heavy to lift and I cannot move well nor get enough sleep to overcome the veil of fatigue which you have caused, but there’s laundry to be done & put away, meals to be cooked, dishes to be washed, grocery shopping to do, a child to bathe & otherwise help get ready for the day or night. I just can’t go on like this anymore!!!

It’s maddening to be going about my day, feeling wonderful and soaking up all the joy that life has to offer and then BAM! You come along with stiffness, pain, fatigue or a head full of mess and try to ruin everything – not just for me but for my daughter, too, which is unacceptable!

So, you see? I need us to part ways. I understand there’s no cure & treatment is only partially satisfactory, but you’ll just have to leave me alone for now. The doctors say your initials stand for “Intracranial Hypertension” but I know better:

IH really means Insistent Hovering, Impairing Happiness, Inconvenient Hassle, Interrupting Harmony, Interminable Hindrance.

I am not fooled. And I want to break up. So, we’re through. We’re finished. We’re over. Excuse the bluntness of it all, but you’ve certainly not been timid in your approach with me!! I’m sure if you have a response, you’ll let me know by this evening – I’ll probably lay down to sleep and feel your disruptive tingling throughout my limbs, your devious, painful throbbing in my feet and hands. You may even cause my pressure to rise to the point of hearing my heartbeat as my eyes jump to its rhythm.

But, whatever you do, just know that you don’t get to win. You might not be done with me, but I’ve given you the last of my worries, my fears, my pains, my aches, my sleepless nights and bedridden weeks. I’m moving forward with focus on the ones who treat me right, who make me feel good and who show me how much I’m loved.

Take it easy (on me!),

Lylly

 

 

This Gimp’s Guilt

I live in an area of the country (USA) that doesn’t see a lot of snow. But, we just received a whopping 8 inches of it the other day! For the past 2 days the sun has been shining, slowly melting the snow. Yet the temperature and wind chill are below freezing, so overnight everything that melted during the day refreezes causing ice to form on the roads & other such surfaces. One of those surfaces is the ramp leading to/from our front door.

My 4-year-old daughter wanted to go out and play, make snow angels and otherwise romp in the front yard today. But, I was too scared to try to go down the slick ramp. So, I told my daughter that she could go out but that mommy would stay on the porch. I saw the disappointment on her face, but she said, “Okay… Thanks, Mom!”

These are the moments in which guilt can creep in, diminishing the joy I could be experiencing. Although it’s not my fault that I got sick; it’s not my fault that my body is losing a battle with mobility; I did nothing to cause the limitations I have, I still feel like I’m robbing the magic of my daughter’s childhood. I feel bad about not being able to join her in certain activities. I’ll feel guilty for not being able to go places with her or give her the “Physical Mommy” that other kids have.

But, these are also the moments I must make myself pause and reflect on how resilient, flexible and accommodating my little girl is, especially at her young age. She is living out a wonderful childhood, despite her mother’s “disabilities.” We go to shows, the zoo, the park, the library. She’s involved with church, school and gymnastics. We cook together, help each other with household chores, play board games, put on puppet shows and so much more! She’s happy and she has wonderful opportunities for social engagement.

And today as I watched her play in the snow from my perch on the porch, all that I noticed was her smile, her singing made-up songs out of contentment, her giggling and having a blast!!! I didn’t need to feel guilty after all for she was not affected by me not being able to participate. She was just pleased that I joined her outside and watched.

Feeling guilty about my role (or rather, lack thereof) as a “Physical Mom” is a useless endeavor. Besides, I should be concentrating on the fact that my daughter has an “Emotional Mommy” – and that is so much more important!!

Soooooo…… GUILT, BE GONE!!

I am Any Mother

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There are many times people come up to me and express wonder & awe in my ability to raise my child, especially as a single mother. I am told I’m “inspiring,” “strong,” “amazing.” But these aren’t adjectives used to describe my situation as a single mom. They’re being used to describe my being a single mom with disabilities & a chronic illness. Yet, to me I am just another mother; I am no different; I am nothing special; I am simply raising my child like any mom who’s called by Him to do so. Is being a single mom difficult at times? Sure! Is being a parent in general, with or without a partner to divide tasks and offer assistance, a sometimes comic, sometimes frustrating title to own? You bet! Can raising a child evoke feelings of joy, sadness, frustration, pride, anger, delight, inadequacy, humbleness and so many more? Yes! I feel the same feelings, deal with many of the same things and do the best I can to make God proud of the parent I am – just as any parent does. To me, it has nothing to do with my disability or being sick.

My child and I know no other way of life. To us, my using a pronged-cane, wheelchair and power chair are an everyday affair. Doctors appointments, tests, medications, physical therapy, aquatic therapy are par for the course. This is our normal.

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I admit, there are times I see parents at the park riding bikes with their children and feel envious & slightly depressed. There are times I watch another parent run with, race, chase after or jump around with their child and feel dismayed & saddened at my inability to do the same. I’ll watch a friend with their child, engaged in a physical activity which I am unable to take part in and I feel broken & angry. These are the only times I feel different from my fellow parents. But I remind myself that my CHILD is no different from her peers – and that alleviates any negativity and replaces it with immense joy in the life she’s able to live.

My daughter is able-bodied and is constantly jumping up & down with energy I can only dream of! She lives with abandon, soaking up the love, the zeal, the zest, the new experiences that life has to offer. She enjoys her weekly gymnastics classes and as I watch her excel while I sit among the other parents, I am full of pride and awe in her ability to work through fears and try all the new moves her coach encourages her to try.

I think the only time in my life as a mother that I felt disconnected from other moms, completely aware of my limitations and able to acknowledge that I might be different was the night I found out I was pregnant. I remember being instantly in love with the butterfly of a heartbeat that I watched on the screen of the ultrasound… I was also instantly thrown into fear for my life with this child. I prayed, thanking Him for blessing me with a baby and simultaneously asking for His guidance, His wisdom to be the mom He was calling me to be. I prayed that my ‘disability’ and illness would have no negative impact or consequences for the baby. I was so naïve, for the only impact my situation has had on my daughter has been incredibly positive!

She is currently only 4-years-old yet already understands AND demonstrates concepts such as empathy, compassion, thoughtfulness and inclusion of all those around her. She amazes me in her ability to problem-solve, to find things to be grateful for in times of disappointment, to be resilient and accommodating. She teaches me more than I teach her. She is wise beyond her years, but not in the tragic, depressing, trauma-based way that some kids sadly come by this wisdom. She has grown up understanding that love isn’t about whether her mommy’s legs work properly; love is about how she’s treated by her mommy, how her mom makes her feel about herself. She understands that my legs may be “broken” but my heart works just fine.

My heart works like any able-bodied mom’s or dad’s heart. I have the same thoughts and feelings that my able-bodied peers have. I dream the same dreams for my child that any parent dreams. I am not different from other moms. I am any mother.

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