22 years ago, I was a young, healthy, strong woman preparing for her first child. (2nd pregnancy, 1st ended in miscarriage).
21 years ago, I was a very sick, very weak mother of a not so healthy baby. No diagnosis beyond “stop being a baby about being a new mother” as said to me by a neurologist … at least she had the curtesy to send report to my PCP as “post partum depression”. I continued in school because, there was nothing wrong with me. I felt I had something to prove.
20 years ago, I was sicker, pregnant (birth control baby .. well, birth control ..strep throat and antibiotics .. publically released 3 months into my pregnancy that if you’re on B/C not to take antibiotics, if you do use other methods ..whoops!) After getting a D, a C, and 2 F’s and dropped 2 classes, I finally dropped out of school in defeat.
19 years ago .. I was being admitted to the hospital (right at about this time on June 1! checked in at 2:30, was in my room by 3:30) preparing for a thymectomy to be done the next day with hopes of putting me in remission from the Myasthenia Gravis (true source of my illness) diagnosed in March.
18 years ago, I was trying to stay out of the hospital, frustrated the thymectomy hadn’t worked. (Knowing they said it could take a few years)
17 years ago, I had 2 kids in speech therapy (the oldest needed it because of repeated ear infections, while his comprehension and vocabulary were almost off the charts .. his annunciation was severly delayed. The youngest because of significant delays). While we were still far too often in the ER with 105 fevers and infections threatening to spiral out of control, the frequent hospitalizations appeared to have stopped.
16 years ago, I recieved my first set of leg braces (AFO’s) and was reeling from the news that my youngest was more than developmentally delayed, but was also autistic.
15 years ago, I was just trying to shuffle one child from PT to OT to Speech, my own doctor appointments with increasing health problems and specialists. I was attempting to homeschool the oldest child. I was also in a fight for my sons future with the school system who was trying to deny him services.
14 years ago was very much like the year before …
13 years ago, I was desperate and afraid .. and had no idea what the future held. I knew I wasn’t a good enough mother for my autistic child. I could not afford, neither physically nor financially to give him the type of care that he needed. During this time, it was well known that ABA was the ‘standard of care’ and I had no means of providing it for him. So, being a problem solver by nature, I did what I could, modifying much of it to something that *I* could physically carry out.
11 years ago, my son had his first grand mal seizure. Till this point, he’d only had petit mals. He was on 9 medications and had 9 doctors, plus the 3 therapists,.
10 years ago, we had found a therapy center that was treating my sons many sensory issues as well as an adult PT that was working with me despite the common wisdom of the age that said myasthenics shouldn’t exercise. We used shortness of breath as a guide. I figured if I got done and felt like jelly (as I often did) as long as I had enough strength to get home, I could rest the rest of the day to recover. I knew that breathing getting fatigued wouldn’t have the same results. .
9 years ago, I was diagnosed with Lupus (ironically on June 1st)
8 years ago, the Developmental Pediatrician, developmental psychologist and pediatric neurologist agreed, B was no longer autistic. (though, still developmentally delayed, still had epilepsy, still had asthma, still had horrific allergies)
7 years ago, we were 3 months into a program through Habitat for Humanity to get a house and get us out of the deteriorating mobile home. It was difficult and trying, and no one, especially me, was quite sure I had the physical ability to comply with their regulations and our particular chapter had no interest in modifying things so the disabled could qualify as well
6 years ago, I was struggling to complete the requirements. My ‘classmates’ (the group I was with) were all finishing their hours and getting their houses … things were bad for my son in school. I needed to get him out of the district.
5 years ago, the end was in sight. Hours done, land chosen. Just waiting for the build date. My best friend recieved news that her 17 month old daughter had brain cancer.
4 years ago, in another fight for life, my husband was in ICU and not expected to make it. My sons were in the new district, but we were not finding special education services much better, much more fighting to come. I was trying to fight for my husbands life and worried about my best friend who was grieving the death of her daughter. (calling her to tell her that Don may not make it was the single hardest phone call I ever made)
3 years ago, my husband was slowly but surely returning to normal. After a few run ins trying to help my friends as an advocate, deal with the chaotic world of special education .. about the 4th time I was told by someone in ‘charge’ that my opinion held no water because I was “just a mother with no letters behind your name” I became angry and was planning on returning to school. Once again, didn’t have anyones true confidence of being physically able to do it. I went against EVERYONE’s advice/request and went back full time. Knowing that I had much to do to repair my 2.1 GPA that had been caused by going to school while too sick to be there.
2 years ago, having finished my first year with the only problem being algebra, straight A’s otherwise.
1 year ago, having proved that school was not too much for me. A PTK member/officer, I began a routine of yoga. I finished my first class, stood up and had no pain whatsoever .. I became helplessly hooked!
Today,my GPA is a 3.607 after 6 semesters of straight A’s (the algebra isn’t a credit class, so no effect on GPA) after a year of yoga, restoring both my balance and my strength, I am not symptom free of autoimmune disease and flares happen all too often, most of which are usually from over doing it or being sick, occassional flares from the weather, I am functioning at probably 85% of my pre illness state. I am strong, and independent and to top it off. I was 5’3 1/2″ when I got sick, within a few years was measured at 5’2” .. their explanation was that the muscle weakness/deterioration had caused a lack of support in the back (primarily). I went to get a bone density test today and am restored to my 5′ 3 1/2 “. My sons are both delightful and wonderful human beings. My husband .. is doing well all things considered, though we are seeing some degeneration.
Life is GOOD!