Thank God for the Dads of Children With Disabilities
My biggest dream has always been to be an interior designer. Why you ask? Because I love, love, love to organize! Like seriously, when I was younger at least two times a week I would organize, tidy and clean my room.
Naturally, as my pain got worse I had to do less and less and less. I could just see how I wanted to have it organized in my mind, and it would haunt me until I would throw it all to the wind and organize with a week and a half long recuperation. But to my wannabe interior designer soul, it was so worth it!
This past year has sucked (and I never use that word), so many bad things including almost losing my little brother in a car crash. In the mix of all that rubbish of feeling, I also had to turn down my scholarship to my dream college of interior design. I can barely make it out of my bed for more than three hours and barely out of the house once a week. My soul has been so very crushed by this loss — the loss of a cherished dream I have had since the age of 13.
But life goes on.
Today I woke up knowing I had to put my dream of reorganizing my room into action. One minute in and I was worried…even more pain, limbs not working…two minutes…I was trying to think of how to ask my family for help, but hating myself and the whole wide world for how pathetic my body has become. Needing help even eating and here I was, unable to do the thing I loved most. My most pure therapy and cure for any negative mood, and I couldn’t do it. Three minutes in and I slowly, painfully (emotionally and physically) made my way out of my room, down the hall and stood before my parents who were watching a movie together. Stilted and brokenhearted I asked for help.
There was my dad. He hopped up to help me without hesitation. He made a joke about my plan to rearrange and I turned to him with anger in my eyes…until I saw the look in his. It told me he knew how hard it was. Those light blue eyes told me he knew I was in so much pain and even more, he knew how much it meant to me to rearrange. He knew. And so he made a joke to help me laugh because he also knew how much I love to laugh.
Cheered up down to my very soul, I laughed out that awful feeling of helplessness and hatred at losing my body even more than the past 12 years have brought. And we got to work!
Hours later of crazy rearranging and a bit of trial and error, a few more unseen problems and humorous findings and my room is done! Exactly as I imagined it, without a word or negativity from my dad while I “supervised” and he moved, pulled, shoved and struggled to move everything just as I wanted. Happily a lot of things were made easier by my previous knowledge of how to move things best in my room. Twenty-one years of living in one room can make a girl seem wiser beyond her years!
Breathing a deep breath of clean sheets of my comfy, fluffy bed, my pup at my side and everything just so, and I can’t help but send a great big strong prayer up to the heavens: “Thank you God for my dad!”
Photo credit: nicoletaionescu/Getty Images
I have dealt with pain for 17-almost 18 years already, passing the half-my-life-with-pain mark now being 29. It started with me being born with twisted leg bones followed by discovering this at the age of 13 after pain in my knees from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. Epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken and twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body-extremely rare. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school. Luckily my ranking was 4th so I still graduated with extreme pain and with help from others who had to write for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong medication to ease my molecular deep ache. Severe Plantar Fasciitis kept me avoiding walking at many costs. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher with many more complications taking over every bit of my body. I joined this site for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face. I am now diagnosed with EDS, AMPS, Fibromyalgia, Hypothyroidism, Severe Insomnia, Asthma, Hypersomnia, Lymphedema, Chronic Fatigue Syndrome, PTSD, Scoliosis, Sciatica, Bone and Shin Splints and recently promised that I will soon cross the line and be diagnosed with Juvenile Arthritis. It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Psoriasis and Eczema now are hitting me harder than ever. I walk like a 96yr old woman and hurt so much worse. Only recently did my new rheumatologist pinpoint my last pain diagnoses as being Spine Arthritis, Psoriatic Arthritis, and RA. At long last I have found a home health company that save me pain and energy by coming to my house for appointments. It is ingenious and such a blessing! My new PCP is a brilliant and knowledgeable woman who actually cares for her patients! She wants us to live our best lives and works hard for it to be so. Thanks to her I now also have a pain doctor who CARES and is not afraid to help his patients live their most pain-free lives!!! He is SUCH a gem like her! It almost 18 years to find these blessed doctors. The biggest lesson I have learned is that my happiness is vital and if I have a doctor that isn't measuring up, drop them ASAP! Life is too short to suffer at the hands of others-especially when we are paying them to supposedly help us! It isn't worth it but YOU ARE! Finally in a place in my life where the future looks bright and I am excited for the challenges, as I know my health loves to constantly cause more pain and troubles like my Major Depressive Disorder, Psychosis, and Anxiety. I have been given a VERY complicated and Unique body that I choose to have as I know it better than anyone else. It is mine and we will learn to become a team though it may take a lifetime. I will never give up. No matter what I will fight on! Just as I have these long years, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And with The Mighty at my ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden. We got this!!!!
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