Add...why? why? why? My first thought? Why do we keep adding to this list? How much does one person have to endure.
It's not an easy journey being a single mom BUT add health challenges and your stress level just took the elevator up a floor depending on your situation. We added Epilepsy to our Alphabet. How did that happen? Cortical irritability causing partial seizures? What the hell is that! HERE'S the WHY! WARNING...THE SAILOR MAY APPEAR...Why the fu** us? WHY! Tourette Syndrome, Cleft Palate, ADD, OCD, Learning Disabilities, Hypotonia, Congenital Heart Defect, & Developmental Disabilities...THAT WASN'T ENOUGH!? DEEP DEEP BREATH...OK maybe a couple of them. Fast forward from Monday to Wednesday. I've had time for it to sink in. It was something that in the back of my mind was expected due to the last few months of seizures that had developed since having her "biggy" in October but nothing really prepares you as a parent to face a diagnosis of any kind. Again, not life threatening...others are facing so much more than this mama, but one more mountain to climb. WE also realize...The heart is healthy, the cleft repaired, the TS kid now grown and has to face his challenges. We know these are all things that we have met head on and we've handled. We get it, we're blessed that way. Now? Now I do what I've done in years past when faced with something new. Something new on our plate. I read, I research, LOL now I "Google". I educate, I advocate, and I keep on moving. I run my mouth for my sons & my daughters, for myself, and for others affected by #Tourette Syndrome, #Developmental #Disabilities, #Cleft Palates, #Heart Defects, and NOW #Epilepsy! Welcome to my alphabet world! My alphabet babies.
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The cookies are gone, maybe now we can get somewhere.
Sneaking cookies out of the open bag without mommy seeing them seemed to be a bit of a distraction tonight. Then they decided if they fed the monster she didn’t growl. LOL “mom, I brought you some” as he laid them on the arm of the chair and skipped away. I believe the whole bag is already gone. 4:30 a.m. and I’ve been up an hour already. Wide awake and mulling over how our lives have changed over the years, specifically in just the last 6 months. 5 kids and 5 very separate issues. Luck of the draw they said, alphabet soup, years of IEP’s and years of stress. It’s taken its toll; this last one broke the camel’s back. I keep going. I’m not sure at what point I realized I’m a “special needs” mom. Who coined that phrase? I just always thought my babies were special, “needs” didn’t enter in to it, and we all have needs. How long have I been at this? Most of my adult life, my almost 25 year old hellcat was born with a cleft of the hard and soft palate, not discovered until she was almost a week old. She screamed and screamed, she was starving, LOL she still screams. Several surgeries, lots of visits for ear infections, lots of late nights, visits to the ER because she stuffed something in her mouth in it stuck in her nasal passage. ACK! Big R, he’s the oldest, was he next? I don’t remember. Tourette Syndrome, we had seen the tics in grade school and thought nothing of them. They exploded in junior high, puberty they said. Can I have that TS, throw in a side of OCD & ADD while you’re at it, and sprinkle it with Coprolalia. Those were not fun years either, lots of tears. Better? Better than they were, he still battles the tics, battles his own body. Baby girl, she’s number three in line. I’m not sure but I think I must have been the dumbest mom alive. Maybe I was so wrapped up in just trying to maintain my sanity, pay the bills; working 2-3 jobs at most times, that I didn’t see it. She couldn’t hold her head up, couldn’t crawl, walk, and for years every doctor appointment was no real biggy, she was the happiest baby alive, but yet different. It wasn’t until years later fighting for inclusion, fighting for her rights in school to be something other than that kid that didn’t go to class with everyone else, the one they wanted to take out the trash and wipe the lunchroom tables, that I realized “I’m a special needs mom.” When did those Fn headaches start and when did she grow up? I used to just worry about whom her friends were, her phone, her latest crush, her social media accounts, and whether she brushed her teeth and washed her face at night. She’s a little girl in a big girl’s body. 6 months ago those damn headaches turned into those damn seizures. I’m exhausted. I’m not sure I’ve had one night’s peace since that night. She’s always needed extra attention, extra watching over, but not like now but even still I know that I have do have it better than some parents dealing with medical issues that are much worse. If God let you choose, let you fill out a survey, I’d still check this box. Baby #4, a true mama’s boy, gray at birth with the cord wrapped around his next. It took forever to get him to breathe. Is that why he struggles? Is it some defect his mama has passed on? It’s definitely what his grandmother thinks and she didn’t mind telling me. “All these issues, they must get it from you”. Wow, that was a blow. It’s a constant battle to keep him on task, color deficient, and ADD? A daily battle, I’m just praying we can squeak by his freshman year. My little monkey and bringing up the rear at number #5. A smart little booger his teacher tells us, born with a heart defect that we were told would require heart surgery, color deficient, and a funny speech thing going on. Not a planned addition to our group, since we already had 7 between us, but what a joy. By some miracle that heart healed itself, unlikely they said, but a very slim chance. Thank you God! Surviving? I’m surviving, not sleeping, and eating cookies. They’re all succeeding and mommy is doing her best to keep her sanity. Barely started and sidetracked, time to get back in the groove! That last 10 months have been busy to say the least; I'll catch you up. I continued to work on my classes in pursuit of a business and marketing degree with a certificate in leadership. In June 2015 I became a grandmother for the first time. My bouncing baby boy became the father of a bouncing baby boy. He's beautiful and I was invited to witness the whole process of the birth of my first grandbaby. What a gift, something not many daughter-in-laws to be would agree to. The poor girl suffered many set backs, postpartum, and several trips back to the ER. I'm so fortunate to only 65 miles away so I could help out. That baby boy is now crawling and just recently pulling himself up to furniture. They still reside only 65 miles away where he teaches and is an assistant coach and she is a para and most recently started a blog about first time parents. They will be married in a few short weeks and we will head to my happy place to celebrate their union. The next few months after baby R's birth. School started and my family made our first trip as one big unit in several years to a state park for the school's first vacation weekend of the year, Labor Day weekend. We rented a HUGE home that dated back to the 1800's, former officers quarters, and had the time of our life. New memories were made, horse back riding, buffalo stew, stage coach rides, museums, etc. We are looking forward to this year's trip back to the same park. In October we had a little setback...maybe a little more than a "little". My 19 year old daughter suffered a major setback. I received a call at work she had collapsed and they had called the ambulance. She was laying on the floor whimpering. she was suffering what they assumed a seizure of some sort. We unfortunately have been battling the seizures ever since, no answers, tests after tests, many trips to the "city", images, blood drawn...NO answers. Petit Mal or Absence seizures. They believe that she may have been suffering them all her life and something recently has triggered significant episodes. They have also discovered a thyroid issue and we are awaiting orders to see a specialist. I have since quit my classes. I am not able to keep up or focus, my world now revolves around my daughter and her health. Everyone else is standing around like puppies wagging their tails waiting for mommy to throw them a bone. It's not a good situation but I'm hoping if I get back to writing it will relieve some of my stress. We will take one day at a time and meet any challenge head on as it comes to us. My oldest daughter Brittany graduated from college in December. What a proud moment for this mommy! She worked so hard to get where she is! My heart swelled and I am looking forward to seeing the great things she will do in the future. She's been writing for years & maintains her own blog and has a big girl job that she enjoys. My "little" boys? They're in school, it's March & an early spring? We just finished our basketball season with a first round loss at state. The first time since 2002 as a team we've made it, what a fun year. My son is freshman, so after a very long dry spell we were back on the wood bleachers and following the team. I didn't realize how much I missed it. Prom is just around the corner & in a small rural community the freshman get to attend. My youngest? He's in Kindergarten and LOVES school. If he didn't look so much like his dad's family I'd swear he'd been switched at birth. There! I think...MORE than I anticipated but I think I'm all caught up. |
Cynthia"Don't put an age limit Archives
July 2018
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