November is typically the month where we give “thanks.” And I can’t think of a better way to kick our site back up by thanking our community for all of the support and love that it has given me these past few months. For those of you who don’t know, I’m going to let you inside for a moment into the goings on in my personal life so you can better understand what happened and why there was such a big step back from this site and our community.
Last March my husband, Kenny, and I sold our family home. Selling a home is stressful enough. But even before then my life had slipped into an emotional roller coaster, as we were doing this because our 30-year marriage was ending — which in itself is enough to knock someone over. I knew this was going to be a long, hard road – especially being that I am also a special needs mom. Naturally I worried about how this would affect my daughter, Hadley, while deeply worried about how to keep her life as stable as possible at the same time striking it out on my own. Sarah, the other love of my life and Hadley’s older sister, was also struggling with all the rapid changes. While happily married, the dissolution of her parents’ marriage and the loss of her family homestead was deeply painful. We were all suffering.
In March, Hadley and I moved out and began our new journey together. The rumblings of the ground below me started to shake, but I was keeping up a pretty good front. We had moved into a Rockville rental apartment less than half the size of the main floor of my former 5,000+ square foot home in Potomac. Absent now was Kenny’s daily presence, forcing me into a more challenging schedule where Hadley’s 24-hour care and assistance is concerned. Particularly so after a presumably reliable caretaker decided her career path needed a new direction. Hadley and I were truly on our own, which is ok, but another unexpected step back. At this point I’m really beginning to bite my nails.
About late April, Hadley’s insurance company thought it would make better financial sense to change her medication to a generic brand. After 15 stable years, I didn’t think so, and neither did her doctor who also wrote and called them repeatedly with the request to keep it at brand name. Our pleas were rejected. I was worried for obvious reasons about something happening to her. You know that mother’s instinct? Don’t let anyone ever tell you otherwise… it kicked in big time. Hadley hated the taste of the generic medication and kept it in her mouth until it formed a pancake, and then she’d gag and spit it out. It became a huge ordeal to get her to take her medication, and soon she refused it as well as any food. One frightful afternoon she threw up and aspirated, the result of which caused her to have pneumonia. This is challenging enough for someone without disabilities. But Hadley’s communication and motor skills are severely impacted by her Cerebral Palsy. She could not tell us her symptoms or where it hurt. She could not take herself to the bathroom to throw up. Her illness combined with her permanent impairment resulted in a month-long hospital stay. This included transporting her from Shady Grove Hospital to GW Hospital for emergency thoracic surgery to save her life. Needless to say, this was emotionally and physically stressful for me as I was with her 24/7 — only going home twice in one month to shower and change my clothes… not a good look.
Finally on July 1st we went home. Hadley left GW with a PIC in her arm for which I had to learn how to administer daily IV antibiotics; something I dreaded. Exhausted and taxed, but thrilled to be home and finally working with improving her physical mobility after being in bed for a month. Kenny came over to help, but left for the 4th of July weekend. Unbelievably, and unbeknownst to him, he returned with Group A Strep. Eight days later he very unexpectedly passed away.
Both devastated and shocked I went into what I call real survival mode… what else could I do? It has been such an emotional year for me I just had to take a step back. For those of you who actually know me, you know that I jump in at 100% when I do something and hate to do anything half-hearted. Therefore, it was just better to step away until my head was on a little tighter. I’m happy to say that time is coming around, it is a daily process, one step in-front of the other. But I do know that I started this site almost eight years ago to help myself, and once again know it will help me while I also encourage others. I’m very excited about getting back to the grind with the site and launching the programs in 2017 that I was very much hoping to do this year and working on rebranding and a huge relaunch. A rebirth… a new year… new goals… and new dreams. It is because of my sisterhood with you that I am able to do this, and I am so very thankful and appreciative from the bottom of my heart!
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