It is natural for me to step in and help others in their time of need but accepting help can feel uncomfortable, embarrassing and unnatural. Mike and I are the ones who make the meals and deliver them, pray for and with others. I donate to causes and jump in to help any time I can. I feel it’s what God wants me to do, and it brings me joy to bless others.    Over the years, especially with Mike’s poor health and inability to work, we have had help from time to time, but we have always paid it forward and I have always worked 2 or 3 jobs at a time to provide for ourselves, so not to have to rely on the welfare system. I firmly believe if we are able to work, we should. Although we don’t have a fancy house or what this world considers riches and status, we are rich in faith, friends and family. Most people who know us, know how difficult this last year has been, especially the end of 2024 and beginning of 2025. We are used to Mike being chronically ill, but December right up unt...

  Woke up this morning exhausted, rolled over to watch Mike’s belly rise and fall, just to make sure he was still breathing, as I do every morning, thanking God that he was. Went through the motions of my morning routine, taking care of Oscar and getting myself ready for work. Now I’m at work, watching my student participate in gym. Watching him having fun with his peers brings me an occasional smile, but at the same time, I’m not feeling like myself. Yes, I’m tired, but it’s more than that. I feel sad. Not exactly sure why, but I feel like I could cry at the drop of a hat. I feel unsettled, my mind is racing and my stomach is tossy turvy.  I’m not comfortable about leaving Mike today. He’s been ok for the most part, but last night he was off. He stood at the kitchen sink for a good 15-20 minutes, doing nothing. I finally asked him what he was doing and he said “I don’t know what I’m doing”, he appeared confused. After that, he deboned the turkey from supper and put it away. H...

March 21 is World Down Syndrome Day. This date (3/21) was chosen because Down Syndrome is caused by a third copy of chromosome 21. *Most people have 23 pairs of chromosomes within each cell in their body, for a total of 46 chromosomes . A person with Down Syndrome has an extra copy of chromosome 21 which means their cells contain a total of 47, this changes the way the brain and body develop. Down Syndrome is also known as Trisomy 21.  The reason this day is important is because it raises awareness. Many people don’t understand conditions that don’t affect them. Raising awareness of conditions such as Down Syndrome can make people understand exactly what it is and may help them to be more comfortable and accepting of those who have it.  People who have Down syndrome have similar physical characteristics such as almond shaped eyes that slant upward, flattened bridge of the nose, smaller than average hands and feet, small ears, a smaller mouth and larger tongue, to name a f...

  I am writing about this topic because writing helps me reduce my stress. I know although I feel alone in this journey sometimes, I am not, so I’m hoping by writing about it, I will help others to feel understood and validated. I have written a blog post in the past about living with someone with chronic illness, this post will be similar to that, but more on the feelings of burn out. I think like me, many care takers don’t vent or talk about their feelings as much as they probably should. I can only speak for myself but I suspect that there are probably many who feel the same way. Most of the time I don’t say how I’m really feeling because I don’t want to sound like a complainer. Besides, do people really want to know how I am feeling? Probably not. Sort of like how the majority of people ask “how are you?” In passing, but they really don’t want to know, they are just being polite. If they really wanted to know, they wouldn’t ask when passing by, they’d ask when they planned on s...

Twenty three years ago when I applied to work in the school system, my goal was to have the same schedule and vacations as my school aged children. I had no idea back then what working in special ed would be like. I was nervous at first and wondered if this job would be a good fit for me. Before this, I had worked as a nursing assistant for many years with elderly patients and I was a stay at home mom, often doing things from home such as crafts and cake decorating.  I learned quickly that working with children with a variety of challenges and different abilities, is a calling. It requires patience, love, and resilience. Although each day seems the same as far as schedules go, it truly isn’t. Every day presents new challenges and victories. No two students are the same, yes, they may have similarities like everyone does, but one person who has Down syndrome for example is not the same as another person who also has an extra chromosome, because like anyone else, they each have uniqu...

Yesterday marked a week since Mike has been home from the hospital. Our new normal has been an adjustment for both of us. I feel like I’ve been honoring the “sickness & in health” thing for a long time, but even more now.  Since Mike has been disabled, he has been the primary cook, dish washer, grocery shopper and laundry guy. Now, he needs to focus on managing his pain, resting and getting better. I’m taking on “his” jobs as well as my own. Besides working both of my actual outside jobs. I’m learning and trying to be creative with a renal/diabetic diet. I’m working harder on being more organized, keeping his appointments, dialysis ride schedule, and phone numbers straight.     Since starting dialysis, his creatinine had gone from 5.8 to 2.6, 2.6 is the lowest his creatinine has been in years. Last week his Creatinine was back into the high threes. This is concerning because it could mean a few things, that dialysis treatments may not be adequately removing the waste ...