I am sorry for whatever tragedy or disappointment has befallen you and or your family. I probably didn't know about your crisis when it happened. Heaven knows, I am left out of the loop unless I read about whatever happened online. So, if I did anything offensive, it was not intended. Life sucks, I am very aware. Now - GET OFF ME!
I have had my share of tragedies, and I have been there and felt your pain. The last thing I would ever do is purposely add the "F" to it! I had a miscarriage at 20 weeks and if I wasn't devastated enough by that, my in-laws gave me SH!T about how the fetus was probably severely disabled and how we wouldn't have wanted that. At 20 weeks, I was already in love with that baby and I grieved sorely. It hurt my husband even more, because he has developmental disabilities and was one of those babies we "wouldn't" have wanted. Talk about insensitive. Even more, the one telling us how hard it would be was mother to an autistic son, one of those babies, should I have asked her if he shouldn't have been born. Darren was precious gift. I will never forget him putting on his hat & shades and doing his best imitation of Elton John singing "Daniel" and pretending to play piano. Oh, Darren, you were like "Daniel" in that "your eyes see more than mine". I am so grateful to have known him. He was one of the few in-laws that accepted me unequivocally.
When Ralph and I married, I had undergone an evaluation at the local sheltered workshop because of physical disability, binaural hearing loss. His family ASSUMED since he knew me from there, that I was similarly disabled and they would end up taking care of me also. They never gave Ralph any credit for being a man, and being capable of being a husband and father. I am not saying our lives together were without challenges. Lord knows, there have been lots of roadblocks and oceans of tears. But there was even more sweetness and love and we had beautiful Juli. She came in the wake of the tragedy of that miscarriage.
She was hard fought for and won at a GREAT price. I had obstacle after obstacle to not only her survival, but mine as well. First was bleeding and fear of miscarriage at 10 weeks. That was first of five ultrasounds. I was put on bedrest at ten weeks because of placenta previa, which was not commonly known then, in hopes the placenta would grow up and away from th cervix as the baby grows. Well, on the heels of that came gestational diabetes, followed closely by preeclampsia. I was hospitalized at what by original calculations was just over 33 weeks, shortly after my first anniversary. Our baby shower was on that day, and on the way home, we came up on a devastating looking accident that was my stepsister's car in which she and my mother were heading home. Juli was born, according to ob/gyn/surgeon four weeks early, six weeks by my gp's calculations, and 8 weeks according to the neonatologist. She was taken c-section after the 3 tests done by amnio showed 1. her lungs WERE ready, 2. they were NOT ready, or 3 unsure. She was on oxygen first day of her life, and umbilical iv for five days, and uv lights for bilirubin for two more days. During this time my c-section staples were removed, my dad died, I went to the calling, spiked a fever and woke to a seeping open wound that my mother said looked like raw hamburger. Only a thin area of muscle had started healing enough that it kept me from being eviscerated. I was readmitted on day six of Juli's life, she went home on day seven and I finally got to join her on day eight. And I found out afterward, she suffered having her little heels stabbed every two hours to draw blood to check her glucose, calcium and bilirubin levels that whole first week of her life. I was also devastated that my most evil sister-in-law that was a former employee of the hospital was allowed to hold my daughter not only before my husband did, but before I even knew for sure she had survived. My family, out of respect for me, waited until after I had seen her and held her.
We had originally wanted three children. Upon finding out that the c-section separating would likely recur, and there was a strong possibility of mortality, we decided to be grateful for our Juli and not try for more children. So between the miscarriage and all the complications involved in Juli & I surviving her arrival, we chose to cherish the precious gift we got in her with no regrets. Apparently my reproductive capabilities were a lemon, so I made lemonade, and poured all my efforts into raising my beautiful daughter and letting her know how special she was. She said when she was only 8 that God had special plans for her.
Her life so far has been frought with obstacles. She had Respiratory Syncictial Virus (RSV) at three months, and by age one and a half was on meds for asthma. By age three, she had urinary blockage and endured scary, painful tests to resolve that. At eight, she began having juvenile migraines and we first encountered cysts that would turn out to be Hidradenitis Supprativa Acne Inversa, a very painful, little known condition with no cure.
My in-laws, when my life was in turmoil from losing a second daddy, my stepfather of 17 years, decided that when my housekeeping was out of control, to turn me in to welfare because cobwebs and clutter could be hazardous to Juli's health. The stress from fear of being taken away from her daddy and me, caused way more problems with her asthma than dust and cobwebs ever could. They did this at the time I was most overwhelmed, because not only had we lost daddy, momma was rapidly deteriorating healthwise. I had also begun living with type two diabetes at that time. The aunts that called welfare, took great delight in telling Juli that if she didn't pick up her toys, they would take her away. Nice aunts, huh?
Then when Momma went through congestive heart failure, we got a rare and precious gift of an extra year and a half to love her. She lost her left leg above the knee five months later, but we managed to bring her home again. During all of this, not only were we dealing with this, but my brother was in and out of jail for various drug related charges and his wife left him. He ended up staying with momma until his schizophrenia got the best of him and he tried to choke her and she nearly bled out from an ulcer that developed from his treatment of her. I was trying to keep her house and my own complying with welfare, handling her, Juli's, Ralph's, Michael's and my own health problems. My in-laws answer was not to offer any real help, they called welfare yet again.
May of 1998, the 6th to be exact, Momma left us. She and I had been best friends, much like Juli and I are now and I know people worried how I would cope with her loss. My wonderful sister-in-law's solution, tell six year old Juli, that just lost her beloved Grandma"Creepy" (she couldn't pronounce Streby), not to cry because Mommy might go crazy and she'd lose her too! "Isn't that just kick you in the crotch, spit down your neck fantastic?" (friends quote) Juli didn't cry for a whole year! My poor baby, to be told she had to be responsible for her mother's mental health?!
Few years later, we were finally doing fairly decent and decided to try for the first time homebuyer's program offered through the USDA. We were less than ninety days from closing when the factory where Ralph worked decided to ship their operations overseas and we had to pull out of the contract. For over a year, Ralph worked with a job placement coach trying to get another job. We had applied to ss disability for him because all his jobs had been supported employment with special accomodations to allow him to work. He was not considered to be substantially working, because he needed support to perform the jobs. He was hired for another factory job, and had a job retention coach that went above and beyond, so we applied to Habitat for Humanity. We were much of the way through the build when he again lost his job, this time despite having full support of a job coach. Even though two and a half years had passed since he applied for disability it was finally approved. Once again, we lost the opportunity for a house because our income went below the level for Habitat. I had applied for disability for myself because my ability to work was rapidly diminishing due to complications of diabetes. We were again trying for habitat, when I got the first and second denials, this time taking us out of our third attempt for a house and bringing our income down so low we dropped out of the habitat eligibility completely.
During the first habitat attempt, Ralph's health took some alarming downturns, including my in-laws "kidnapping" him and traumatizing our whole family. He had to go on insulin and thy decided that when during an argument I swatted him on the top of the head for pulling a bonehead stunt, that I was being abusive and wouldn't let us talk to him until I scheduled a psych eval for myself. Juli cried herself to sleep as did I. We got through all that. I was diagnosed as having bipolar II disorder and went on meds that basically made me catatonic because they were too strong.
While I was so out of it, my oh-so-sweet sister-in-law decided to once again throw us to the wolves and called welfare. Such love! I finally got my meds adjusted to where I was functional and I struggled on. I was now using a cane, early in the morning and late in the day, since my nerves no longer told my leg muscles consistently when I was standing. I would stand up and keep on going forward toward falling on my face. Or I would drop back. I had developed retinopathy in my eyes (leaking blood vessels and new vessel growth that can swelll retina and blur vision). I could no longer see clearly. I had been hard of hearing since age four due to nerve damage from fevers of 106 degrees. I grew up learning visually by necessity. I learned basic lipreading by osmosis. Hearing aids can help, but are limited. Losing my visual cues, caused me to isolate myself more from the world. Thankfully, the retinopathy is in remission at this time, and God willing, if I can get rigid control of the diabetes, may not recur. My neuropathies affect not only my legs, but my hands and arms all the way to the shoulder on my right (dominant) arm. The focal neuropathy causes so much pain in my hips, that I have to change positions frequently to alleviate it some. The autonomic neuropathy has caused acid reflux (gastroesophogeal reflux disease), irritable bowel/chronic constipation, and urinary incontinence. Meds help with these things, but only so much. I have no regular pain management. I ended up not being able to take typical bipolar meds, because I basically shut down on them, and instead use an anti depressant that has been found to help with neuropathic pain. I couldn't take the regulare neuropathy meds because they adversely affected my vision. I had to stop taking the only effective antidiabetic oral med because it caused my body to mimic congestive heart failure. Still I forge on.
Juli ended up bearing the brunt of responsibility for our household when I was so foggy from the bipolar meds and that breaks my heart every time I think about it. When I finally got under control, she was mentally exhausted and she was initially diagnosed as depressed. They tried her on a med, and it gave her suicidal feelings. On further evaluation, she was diagnosed as (just like her mommy) bipolar II disorder.
Ralph is fairly stable right now, just needs to get his a1c down, thank God. He is pretty much handling the household.
Juli had her second surgery for her HS and got MRSA afterwards. She had missed so much school that she had to retake junior year of high school, and is switching schools again.
I know that she too will emerge on the other side of all this as stronger, because she is after all, Martha Jessamine's granddaughter, and she too, will show 'em all!
OKAY- so life can suck, your heart can break, but like the song from Titanic, "My heart will go on". I grieve with you over your losses. If I said or did something that offended you, I am sorry and certainly didn't intend to. I've said that I am sorry.
I AM DONE! I know you hurt, but I will not EVER go back to being a victim for anyone! My mother stayed for 23 years with my father beating her on a daily basis, and even when the sheriff brought him back the shotgun he threatened her with after she snuck it out and took it to the sheriff's office, still she stayed. She woke up one day to me standing over her telling her I didn't know if she was dead or alive. She decided that day to stop being a victim. Today is my independence day. I am not responsible for your pain. I don't deserve to feel like I am. I owe no apology for a sin I did not commit. No more.
(You know who you are and I love you unequivocally. If you choose to cut off contact with me, so be it. I will miss you. We haven't spent much time together, sometimes families just don't get close. I am however not the cause of your grief. I hope when things settle, you will realize this, but if you don't, I won't come begging. I just ask that you not hurt my child. )
Life gives us LEMON situations and we have to really struggle to find our LEMONADE solutions. I, for one, am going to keep finding good in the LEMONs (they are good in Iced
Tea). This is me, moving forward. Good night!
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