There are three reasons why I (usually) walk in March for Babies: Donovyn, Tristyn, and Naethyn. My first preemie was delivered at 32 weeks after spending nearly a week in the hospital with severe preeclampsia. He spent 3 weeks in the hospital and came home. He was born turkey week, but was home in time for tree. He has been battling a speech language impairment (SLI) and he's more conscious of it now than ever. My second preemie was delivered at 34 weeks. I was at a routine ultrasound when it was discovered I had almost no amniotic fluid left. Even though his bilirubin levels were elevated and was jaundice, he was sent home only to be given a bili blanket two days later and heel pricks at the peds office every two weeks for two months straight. At 4.5 years old, he would be diagnosed with autism. Wait, I can't write that now. He was diagnosed in 2012 before the DSM-V change. On paper it's autism, but I guess I have to say ASD. To me, he's my son and that diagnosis doesn't define him at all.
When D was 3 years old and T was 18 months old, I delivered their baby brother at 30 weeks to the day. Naethyn was born sleeping. After being given 8 transfusions, my life was spared. He never got the chance to fight for his. I have written more about this experience than spoken about it with people. It's painful, it's unimaginable, and it could have been prevented. I will always believe that he may not have survived had he been born alive, could have had all kinds of medical issues. He could and should have been given a chance to fight though and he was denied that. His death brought me to the March of Dimes and to the Share site. I've been able to unravel here, get, and give support.
I still have a lot of anger. I don't entirely blame myself for all that happened. Sure, I still beat myself up for not going to the hospital sooner when I felt that something was off. I am angry over how his demise came to be. I did everything in my power to keep this little boy safe inside. I was SO ready this time. I was a part-time teacher that year who went on bedrest at 21 weeks. My experienced OB was happy to write me whatever I needed and agreed with "the plan." Economy . . . curse you! My OB was my luck charm and my luck ran out. Forced out of the practice because he was older and hasn't invested, I was involuntarily transferred to a newcomer. It was actually the person who was taking his spot there. I had two visits with her, count 'em one, two. On the second and final visit, I told her as well as her nurse my concerns of the swelling and discomfort. That's when she should have checked and ordered a basic standard 24-hour protein screen and possibly more tests, like an ultrasound? But, that would have probably impeded her birthday celebration plans as she turned 40 that day with balloons and all. No one at the office shared that she was a part-time OB and that I would be seen based on HER availability, not my need. What was I paying all of this money in medical for if I was just supposed to self-diagnose and save my own life at the end?
When you plan, work to make it work, advocate for yourself, and you still get screwed, it sucks! The fact that I had a blood clotting disorder really helped her with her paperwork. She never owned up or addressed the fact that I was admitted with severe preeclampsia once again and the events that transpired happened because of that missed diagnosis. I had a history for goodness sake. What's the point of taking medical intake if no one is going to read it or follow through with it?! I had my doubts and darn it, I was right. It doesn't feel good to be right. On my darkest of days, sometimes I hate that I had the sense to go to the hospital. Had I waited just minutes more before seeking medical intervention, it would have been a very different situation. I wouldn't know anything about this grief journey and my hubby would be raising two kids alone.
Here I am doing my best to make sense of it all. Like many, trying to turn something so devastating and painful into something that feels positive. For the past nine years, we've walked and fundraised for March of Dimes. This year, so many things fell on the same Saturday. We had the walk, a teacher conference for hubby, and a community garage sale that I needed to do in order to unload unwanted goodies. We schemed and thought we'd at least drive down, place a sticker on his flower in the Memory Garden, take a pic, and drive back in time to drop off to conference and for me to do the sale. When my eyes shot awake at 4 a.m. that morning, I second guessed the plan, but knew that I just needed to do what was easiest for me. I am so exhausted from making it all work and fit. No more. I had to reason that not going doesn't mean we love him any less. He's on my mind every. single. day.
True, there may have been secondary reasons for not going this year. I was still fuming from a comment that was made at a MOD event. Let's just say, "Can we NOT?!" is an expression that we jokingly use around our home now. Maybe it's the anger that I couldn't reckon with this year. I couldn't set it aside while honoring my other two. Maybe it was just a busy-ass weekend! The great escape to San Diego for the comedian for Naethyn's angelversary was a total bust. Even though it was supposed to be a kid-friendly show, he was cursing up a storm. There were many individuals with disabilities there too which I found interesting. By the time Achmed came to the stage, T was ready to go, and we left.
It's the last day of April and it was Autism Awareness Month. We've been lighting it up blue here this whole month with our blue bulbs in our coach lights. Lighting it up to spread awareness, acceptance, and hope. I am personally torn because while I want my husband to earn more money with teacher raises, my sons' school could have given a hoot about supporting him in the classroom. We're still REDFORED over here. Schools are closed again tomorrow, Day 4 of teacher walk outs. My teacher hubby is donating blood tomorrow morning with UBS. He was going to wait until July for the big blood drive, but he's eligible now, so why not? So happy to have the educational schooling alternative (ESA) here in AZ. The ESA, BP meds, and this Share site are all definitely still keeping me from running down the street naked.
Here are some shoes that I rediscovered. I purchased one for each baby. After our loss, I tucked them all safely away. I'm going to be sure to find a special safe place for them in our forever home this Fall.
I'm so sorry that a rude comment left you with some anger. I have found its very hard to be a loss parent sometimes, even when we are in an environment where people should understand, it seems to get lost. While I have managed to raise funds every year for March for Babies there have been a few times where I didn't actually walk, for similar reasons, such as a cold rainy day where I'm fighting a cold and I didn't want Abbey (at 3 years old) out in that weather. I think that I"m still doing good and raising awareness, I just didn't walk 3 miles that day. I fully support your husband and his co-workers. It's not a profession that I possess the patience or the skill set for, and I have nothing but admiration for those who do. It amazes me that funds can't be allocated for basic supplies and livable wages for a job that is so very hard.
Love and Hugs
Hugs hugs hugs. And I can't wait to hug you in person.
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