AAUGH!

Those of us of a certain age undoubtedly remember the cartoonist Charles Schultz and his beloved though bedraggled cartoon character Charlie Brown. Try as poor Charlie might, he was always thwarted by fellow character Lucy, every time he tried to kick the football, landing flat on his backside always exclaiming...."Aaugh!" Still though, it never stopped him from getting up, dusting himself off and trying again. Hope always sprang eternal with old Charles and so far in this new year, 2024, I feel as if I have stepped into his ever hopeful shoes, as I lie here for the umpteenth time flat on my derriere. 

To say that this year has given me a run for my money would be an understatement. I feel as if God has said, "Now we are really going to see what you are made of." Honestly, He really didn't need to test me. He could have just asked and I would have simply told Him. Mush! I am made of mush! There is no consistency, no flavor, no nothing. Apparently though, He wants me to dig a little deeper. Aauh!

Since the stroke of midnight that brought in this new year, I have seen the inside of not one but two different ER's, two different hospitals, learned my son had osteomyelitis, learned he might possibly lose his leg, have gone through three surgeries with David, had to watch him be in extreme pain, learn all about wound vacs, sweat through the placement of a PICC line, learn to give IV meds through a PICC line, become a 24/7 nurse, find myself in pain that I had not experienced since childbirth, find out that I had a perforated colon and that I was damn near septic, do my own stint in the hospital, and then as a follow up act, come down with a viral infection that dropped me to my knees. Every time I was up, I landed squarely right back on my backside. Aaugh!!!!!!!

There is much that I contemplated about writing today. Aside from the joy ride of the last paragraph, there are other more personal and even emotionally painful things that have gone on that have left me emotionally raw and in moments, devastated. A part of me wanted to just lay all of that out right here and right now, but honestly, the story is still unfolding, and more over, I don't even have the words to process or make sense of any of it currently. Let's just leave it at, I am seeing people through different eyes, and I am standing back, to allow God to work so I don't try and step on his toes. Aaugh!!!

In the midst of all of this, I have asked God to let me know what He wanted from me. Apparently there are lessons aplenty. 

Sometimes, I have found over the years, that with David, I forget he is special needs, i.e. more fragile than the average human. When he is doing well (which is more often than not) life is normal. I don't spend a lot of time stressing or worrying about him. However, when his fragility rears its ugly head, it is never in a small inconspicuous way. No, it is always big, grandiose, and very unexpected. This abscess, resulting in the infection, which resulted in his osteomyelitis is one of these fragile moments. Of course the whole thing caught me off guard and gave me stress and worry that will remain with me for awhile to come, but in the midst of it all, some very important lessons were brought home too. 

The first and most important lesson in all of this was how much David means to me (and to so many others.) He is not your average kid and because of this, no matter how good my efforts have been in the past to keep him well, healthy and safe, now that he is an adult and his body and system are changing, I have to double down on those efforts, pay closer attention and educate myself whenever possible. 

The second lesson I have learned is the power of David. Oh, I have seen it a million times but in the last couple of months it has been awe inspiring. David carries a power of joy within him. Even in his worst moments, there is a light that touches others. When he was in the hospital this time, because he is now considered medically an adult, he was on adult floors. The first floor he was on was the cancer floor until they needed the bed, and then he was transferred to the Neuro/Trauma floor. As you can imagine, neither floor exuded much joy.....until David showed up. On both floors, the nurses loved him and as he felt better, his joyous sounds and laughter seemed to penetrate through any darkness that existed. Even nurses who didn't have him on their shift would come in to visit and get a shot of the joy David oh so willingly shared. In fact, the nurse supervisor of the Neuro/Trauma unit said that if he ever had to be hospitalized again, to ask that he be admitted to their unit. They needed the joy. 

This same joy has touched his home healthcare nurses that come out to see him weekly, as well as the staff at the infectious medicine doctors office and the wound care clinic. As he goes through the doors clapping and laughing on arrival, the front desk people are always happy to see him and of course know him by name. Amidst the severely sick and wounded, David is a breath of fresh air that staff and other patients as well seem to enjoy and appreciate. 

It occurred to me the other day, that if each of us just gave half the effort to love life the way David does, and to share that love the way he does, this world would be such an amazing place. As it is though, it is David's super power and nobody does it better than him. However, maybe this episode was God's reminder to me, not just to appreciate the amazingness that is David, but to also take a page from his book and up my game where it comes to joy, love and the sharing of both. 

Lesson understood. 

Possibly one of the biggest lessons I have learned throughout all of this is about me. I have spent the better part of the last 20+ years feeling that it was my responsibility to take care of everyone and everything, solicited or unsolicited. After awhile, I got so good at it (is good really the word?) that kids, adults, and even the dogs just let me do it. At some point in time, everyone in my world quit fully taking care of themselves, and allowed me to take over. Sadly though, with great power comes great consequences. The obvious enabling aside, I have worn my mind and body down to dust and are those I "helped" really any the better for it? 

When you are so busy planning, directing, and implementing everyone elses life and needs, there is little time left for things like eating right, sleeping, giving myself time to heal when I'm sick, or even getting to know who I am at this stage of my life. Well, hold on to your hats because I got to come face to face with who I currently am and she ain't pretty. I am a woman who has a hole in her colon and needs a colonoscopy (don't think that doesn't terrify me in light of my brother) and has the back of a 90 year old. I have learned that just because I paint an "S" on my chest, it doesn't mean that I am superwoman, in fact I have no idea who I am. I also realized that I no longer want to be in control of anything but myself, and maybe when necessary David. It also occurred to me that anything my adult children are going to learn from me, chances are, they already have (bad habits/traits and all), it is time they go out and start implementing them and stop allowing me to guide their course. I am done accepting the credit for the fails. It's time they put on their big kid pants and find their own way. 

I also became very aware that to want, need or expect help from others in most situations is a master class in futility. Everyone has their own lives and regardless of where you "think" you fit in others lives, the cold hard truth is that you are born alone, you die alone, and everything in between you usually find yourself doing alone. This is not a complaint, but more a realization that I seem to have to relearn over and over throughout my life. The fact is, most times, I am good alone. I am used to alone and I am pretty darn proficient at alone. It is only when others start acting as if I need help or tell me they are going to help (and in a moment of weakness I buy into it), that I start getting the need/want thing twisted. 

This is not to say that I don't have people around who care about us and who aren't willing to help if the need is crucial, but the bottom line is, my life, my needs, etc, don't trump everyone elses needs, families and lives. No one should drop everything they have going on at the drop of a hat for me. I think the sore point though comes when at times, the ugly frustration pops up when I realize that with those closest to me, I often give till I have nothing left to give, but when my need is there, they have nothing to give straight out of the shoot. That is when I have to slap myself into perspective and remember that what I gave, I gave freely without strings or conditions. Just because I gave doesn't mean that I am owed anything from anyone. I made my choice to give and they make their choices too. That is simply life and life ain't always fair. Aaugh! 

My body is in fact very much need of rest and healing right now. My mind is anxious and I need some peace just all the way around. This point was driven home to me this last weekend. 

Last summer, I bought tickets to go see the musical Wicked in OKC for Willow and Zach and I. It was a combined birthday gift for both Willow and Zach. This last Saturday was the date. Of course the Monday before I ended up in the hospital with the perforated diverticulitis. I was in until Wednesday and sweated every second wondering if I would make it to OKC. By Wednesday when I was released, in true ME fashion, I came home gangbusters, getting out of the hospital and immediately cleaning and cooking before my overnight bag even hit the floor. I spent the next two days cleaning and assuming that I was all healed, not once thinking about what my body might be going through trying to recover from such an infections. On top of this, my grandson was not sick sick, but obviously he wasn't 100% and he was sticking to me like glue, sitting in my lap every chance he got. I think for this particular virus, he was patient zero. 

Saturday morning, the big day, I woke up coughing. FOR REAL????? Nope. I had too much invested in this day. I was going even if it killed me. By the time we got home, I thought it might. I will never regret the trip, the musical or the time I got to spend with two people I lover dearly, but by the time the play was over and we were headed to the car, I nearly cried thinking about the two and a half hour car ride home. My head hurt, my body hurt, I was coughing so hard it caused me pain, and I literally wanted to crawl into the fetal position and pass out. I ended up back in the ER with a 103 temp. It was only then that I realized I really was an idiot and that I might have caused more damage to myself by pushing so hard to do it all. Luckily (if you can call it luck), I had done no extra diverticulitis damage. Instead I had dehydrated myself to dust, and I had a viral infection that my already weak body was having a heck of a time fighting off. I could literally feel both the doctor and the nurses eyes roll to the backs of their heads as I told them of the stupidity of my week. Aaugh!!!!

So here I sit. I am still fighting this nasty viral beast, but I think I am getting better. I do find myself concerned about the upcoming colonoscopy and its results, but for the moment my colon has to heal enough to even do the colonoscopy, so it is just a waiting game. All prayers appreciated. 

David is healing so well that the wound vac is off and we are in the last stages of his wounds healing. Soon it will just be ticking the clock down until he is off his antibiotics and then this particular chapter of 2024 will be closed. Thank God. 

As for the rest, I think sometimes God whispers to us what He wants us to know and the direction He wants us to go, but when we (ME) are too busy jumping in and out of our own lane, trying to control the whole world and everyone in it, and listening to our own wants and desires, I simply don't hear Him. That is when He hits me upside the head LOUDLY, and I have no choice but to listen.....and learn. I think that is what these last two months have been about. 

Yes God! I am listening. Aaugh!

 Until next time.......

Toxic Family Traits

I believe I have mentioned before that although I post a great deal about David, there is much that goes on in my world that I never speak socially about. I say this here and now for two reasons. Right now there is a lot going on in my world and it is giving me B-I-G feelings and emotions, because of this, I may find myself blogging more. Yes, it is my therapy. 

The second reason I mention this is because when you live in a home with numerous people, sometimes there can't help but be drama and even trauma. It at times makes me crazy, frustrated and down right cranky, but if I pay attention, sometimes I learn things. Sometimes it is about others, sometimes it is about myself and sometimes it is a combination of the two. The last few days have been the latter. 

Now let me introduce you to myself. Well actually, lets go further back and let me introduce you to my mother. My mother was an amazing woman, but she was not a saint. Like all of us human beings, she had her quirks and issues. One thing though is that my mom didn't have the time or patience for anything that she considered inactivity or nonsense. Translated that means, if you were laying around looking lazy, you needed to get up and do something. Nothing was solved by doing nothing. And nonsense was anything that wasn't productive and/or healing which could be anything from a breakup with a boyfriend to simply being in a bad mood and having a bad day. If she or I fought, then we immediately had to get to the bottom of the problem and fix it then and there, even if it took all night. If there was a problem, then it had to be discussed, put into perspective as to how much of a problem it was and then fixed so we could move on. 

I never really thought much about any of this growing up and never did I think about the fact that I was given no time to process a situation. All I knew was that there was no time in my moms world for nonsense, and pretty much, everything was nonsense. 

My mom conducted her own life the same way. The only time I remember her not sprinting through one of her own problems was when she fell and broke her leg, ankle and foot and she was afraid she would never walk again. Even then though, she only allowed herself two weeks of a pity party and then she immediately put her situation and her leg into perspective, and then was on her way to fixing it. Within a few short months, she was up and walking and doing what the doctors feared she never might. So this is how I was raised and honestly, I knew no other way. 

Looking back on my mom now, I think this way of dealing with life was the only way she could survive. She was a single mom raising two kids. She was always busy and always dealing with something and my dad always let her know that if anything happened on her watch, it was her problem. I think she was under tremendous pressure and thus, she had no time for laziness or nonsense. 

I guess it only makes sense that some of this transferred to me and how I deal with things. I know that I have always tried to be a fixer in relationships and in life, so if there was a problem I was determined to fix it. How do I fix things? With words of course. Lots of words. Even with my friends when I was young, if there was a problem, I was either on the phone trying to talk it out, or I was penning a note baring my soul and trying to get to the bottom of the issue. My husband was much the same way which at times resulted in some long talks and late nights. 

With my kids, whenever there was a problem, just like my mom, I always wanted to get to the bottom of it immediately. I gave no time for decompression or thought. I would instantly be trying to find out the who, what, where and why of it all, and to "fix" things. Sometimes they would talk, but for the most part, I just unwittingly made the problem worse as they were both the kind of humans who needed time for thought and process and sometimes, just to be mad. I truly didn't understand the mind set of holding onto the negative any longer than necessary and that would frustrate me. I am sure, looking back that many fights we had could have been resolved much sooner or avoided altogether if I had simply not needed to fix things. 

Having 20/20 hindsight now, I am sure that my need to fix everyone and everything around me, resulted from what I saw and learned from my mom and was later exacerbated by the death of my husband. I couldn't fix his loss, so I went into overdrive trying to fix (and maybe control) everything else (including the feelings and emotions of my kids). 

It wasn't until my son became an addict and I went to Al-Anon, that I saw the negativity for both my kids and myself that trying to fix everything was causing. I was standing in the way of any true healing that they themselves could do by trying to force immediate conversation and not allowing them to feel, process and heal in their own way. Once this all sunk in, for a long while I was able to focus on myself and the things that needed fixing in my own world, and leave the rest of the world alone, It was downright peaceful for awhile. 

Over the last couple of years though, my need to fix has reared its ugly head again. I will say it is nowhere near where it once was, but it is bursting through the surface again, and let me just say, it is still not as helpful as I think it will be in my mind. Why am I doing this again? My guess is that there has been a great deal of stress and the catalyst I believe was others drawing me into their issues and looking for me to fix them. Unfortunately, when you are dealing with other adults, in most cases, those adults hold their own fixes for their situations. Often the answers and fixes aren't easy or pleasant so they draw others in looking for faster, less difficult fixes, which almost never work out and I end up getting the blame. Sadly though, "fixing" and words to do so by, are like crack to me. It doesn't take much and I can jump into another's issue just by hearing the simple words, "What do I do? How can I fix this?" And in the last couple of days, I didn't even need to hear the words. I simply jumped in. 

Let's face it. None of us is perfect. We all have our flaws and less than stellar traits, but trust me when I say, nothing can shine a blindingly bright light on those traits quicker than your own child. After three attempts at "fixing" in the last couple of days, my fixing was thrown right back in my face, only guess what? In his vision of his not so saintly mother, he didn't consider what I was doing as trying to fix anything. He considered it bullying, pushing and not allowing him to process or if necessary, not even think about the situation. 

WHAT? You have a problem and you don't think it into the ground and then fix it?! Apparently that is the case with a lot of people, especially of the male species. He then ended it with the real zinger. He informed me that part of his issue was that he pushed too and he bullied "to fix things" with issues in his own life and it was a terrible trait. He said he was just like me and it was my fault he was because that was the way I had raised him. WHOA! 

What do you say when their words sting clear to your core and yet you know that there is a lot of truth in what he says. I did raise him like that, because I was raised like that. I envisioned myself as a "helper" for a good many years, but the fact was, my help was at times, anything but. In fact, perhaps this particular trait of fixing that I had forced down their throats was more toxic than anything. OUCH!

This has made me step back and reevaluate a bit. Just like when I first realized this in Al-Anon years back, his words brought me right back to the realization that I can't fix anyone but me and everyone is in charge of their own problems. I have to let them figure things out for themselves. Oh and it also dawned on me that I might need to hit a meeting every now and again. 

So the point of all of this? I know that I am not alone. I know there are lots of us brought up a certain way, that proceed in life the way we were taught, only to find out that what was our norm, is viewed as someone elses toxic family trait. It is a kick in the pants to realize it, but actually in this case, as I have processed it today, it has actually taken some pressure off me. In this moment, I no longer feel that because they live in my house, that it means I have to step in and fix things. Their problems are theirs and if I stay focused on me (and David of course), maybe their problems will be fixed by them in a much quicker and healing fashion. Whatever the case though, we all have problems and finding our own solutions and fixes is what makes us stronger and grow as human beings. And maybe, my son has found his own realization in his own behaviors and will not repeat this toxic trait with his own kids. We can only hope. 

Until next time...........

Conversation

I have this friend that I have known most of my life. In some ways, she and I are as different as day and night and in others, we are connected at the soul. Our lives have had many parallels from our early penchant for finding trouble, to finding ourselves pregnant within months of each other more than once, to suffering loss on a large scale. Maybe it's because of this that she and I can have long philosophical conversations and really listen to each other when others (even those who love us dearly) may find both us and the conversations on the quirky side or even downright crazy. It's okay though, because we both know what we know and believe what we believe, and neither of us is asking for anyone else's opinion or approval. 

After having a lengthy conversation with her yesterday, the first in a long while, I kept thinking about our conversations over the years. As our lives have grown and changed, so has the content of what we talk about. When we were young, it was boys and parties and yes, a lot of mischief. Later it was spouses, kids, jobs, school, and all that these things entailed. Now, at this season of our lives, we still talk about our kids and now our grandkids, but we also talk about our losses and how they affect us. We talk about God, what is out there after we are gone, and all the things in the universe that we don't know and more importantly, don't understand and simply cannot wrap our heads around. These are conversations we have never had before because we had no reason to. We were young and invincible and so were our families.....until they weren't. 

It is a simple fact that the longer you live, the more you will feel loss as those around you leave this earth. I myself have been losing people that affected my life since I was 12 years old and I simply don't have enough hands to count the losses on my fingers anymore. With those losses, it seems that some hit us differently than others. It is not a comparison in the depth of our love for them, but perhaps there are those that we simply are connected to differently. Maybe our souls are more intertwined with some than we realized, and their loss takes us to emotional places we never dreamed possible. 

Both my friend and I have incurred some very painful loss in the last few years and hers has taken her on a journey of incomprehensible pain. It has also changed her and maybe even woken her up to how big and mysterious the world is. In trying to understand her loss, it has opened her up to thoughts, possibilities, and even beliefs that she had never really entertained in the past. From my vantage point, I have also seen that with loss, she grew closer to the one she lost and she has come to know that person (her child) far better than she even did in life. This in itself is painful and beautiful and it has brought her to a place where she now sees the world much differently. Thus fodder for many of our conversations over the last couple of years. Because of this, she has opened me up to realizations that I had never really thought of before. 

Prior to her loss, my friend questioned or maybe simply didn't fully believe anything spiritual, and honestly, like the rest of us, she was too busy surviving in this world to really pay much attention to really experiencing it. Now though, she is acutely aware of all the things we humans tend to miss on a daily basis. There is such beauty we don't see because of the blinders we wear. There is also so much we fill our lives with that really means nothing in the big scheme of things. I think one day the most profound thing she said to me was, "Lisa, the only thing that matters in this world is love." Now as long as I have known this girl, she has never once before prophisized about love, and yet, I know she now believes this to her core. 

Due to the mother who raised me and my upbringing, I have always had a firm foundation of God, faith, and my own spirituality though at times it may struggle a bit, it is usually fairly on point and has gotten me through more trenches than I would like to remember. Through the years I have told my friend my beliefs and where I stood and while she never discarded my beliefs, she also never saw things as I did. We were good with feeling differently, but it also sometimes limits the conversation when you know the conversation can only go so far and you seem more like a preacher than a friend. Now though, our conversations can actually be endless. 

Together, we have discussed God, heaven, religion, spirituality, and all the things out there that we can't even fathom. Yesterday we even talked about extraterrestrials. We were talking about Area 51, the incident at the Florida Mall, and the possibilities that if these things could be real, what that might mean in the big scheme of things. She said she felt funny talking about this stuff to others as people look at you sideways and some even find it a slap in the face to God. It kind of shocked me as my mother's words came to mind. My mother had her own legit experiences with the ET world and she told me one time that we were pretty egotistical to believe that just because God created us and "our world" that there wasn't more out there that He also created. After all, He is God and perhaps this world is all He felt the need to share with us. Like any parent, maybe He didn't feel the need to make us privy to all His creations, only the ones that He felt necessary we know about....at least for the time being. Honestly, it made sense to me. After sharing it with my friend, it made sense to her too. 

Other conversations we have had, have taken us into the sensitiy of children. Coming into this world with an open heart and spirit, I do think they can be sensitive to things that we as adults have shut out of our minds. Children don't know that they "shouldn't" see things, while as we grow older, the world tells us many things "aren't" possible, but aren't they? I've had my own "unexplained" experiences as a child that have stayed with me my entire life, and I have watched other children experience things that there is simply no explanation for. Again, this is not a disrespect of God, but the belief that God can do anything, and perhaps because children are so innocent and open, He allows them to experience things such as this to widen their views and with a purpose to mold who they will become. 

We have also talked about reincarnation which I can't really get my head around, but it is definitely an interesting concept and conversation, as well as Heaven and hell and people who have died (for minutes) and come back and what their experiences were. We have shared podcasts about all these topics, as well as thoughts about the paranormal and even ghosts. Yes, death can bring on a lot of questions, and some very interesting conversations if you allow it. 

Through all of these conversations, I have realized that time and circumstance have brought my friend and myself closer together. We talk about the weird stuff, the hard stuff, and the really painful stuff. She has also made me more aware of the world around me. I find myself picking my battles more carefully and realizing that most of the stuff we, as humans fight over, is just that.....stuff. In a week, month, year, etc, most of it will not matter and actually probably does not matter now. I also have found myself having such mixed views of others. While so much of what goes on in the world right now is sheer ridiculousness and people on a whole make me avoid humans at all costs, I do also try to view people through the lens of walking a mile in their shoes. I try not to make instant judgments on what I think of someone and I try harder to see deeper than just the surface. I am doing my best to make kindness my "go-to" even when I feel anger or anything but kindness. Most of all though, I am trying hard to cherish the moments I have with those I love in my own life. I try to appreciate the sound of a full house and my grandkid's laughter, the cold outside, even when it makes me aggressive, the sound of the rain, the time I get to share with my own kids, and the moments I have that are quiet so that I can listen and pray and maybe even hear beyond the regular hum of life. 

Yes, this particular friend, as with all of my friends, has a special place in my world. She has reminded me that life is short and we have to open our eyes and see its beauty and take in all that is given to us. She has also brought home the fact that sometimes the worst has to happen to us for us to be able to see things we never would have otherwise seen. She has helped me let go of all the stuff that clutters my mind and heart and most of all, she reminded me of what matters most......love!

Until next time......

Body, Mind and Soul. How I'm Doing So Far!

No, I did not abandon ship these last couple of weeks. I in fact lost my laptop charger (which is a story in and of itself) and call me old school or a spoiled brat, I prefer to only write my blogs on my laptop. So thanks to Amazon, I now have a new charger and I am back in business. 

Today, I write this from my bed. Yes, it is 11ish in the morning and I am in bed, with my dogs, writing a blog. Definitely not my normal Saturday routine, but today, and for the weekend, this is where I plan to stay. This is the closest thing to downtime that I am going to get, and even this is getting me sulky looks from others who reside here, but other than Davids needs this weekend, I am going to concentrate on myself mentally, physically and spiritually. 

This last week, some things occurred to me. One of those things was that I am not really a pleasure to be around right now. My body hurts, my brain cannot stay engaged for longer than a few minutes and emotionally/spiritually I am struggling. I am exhausted physically and this exhaustion is playing havoc with everything else. So yeah, here I am venting a bit. 

Do not ever get me wrong though. I feel grateful everyday for David and all the many wonderful blessings he has brought to my life, but I also won't lie, being the parent of a special needs child can be tough at times. Add to that, being a widowed mother of a special needs child and you have a new layer of stress, frustration and even loneliness that a two parent partnership doesn't experience. 

Also, I think sometimes people think I put my whole life out there for the world to see, but the reality is, there is so much that goes on in my life behind the scenes that doesn't even have to do with David, that I never share. Heck, even my own family and friends don't know my real life. If I am completely honest, at times, David is the least stressful part of my world. I juggle so much in my daily life above and beyond David, and apparently I do it well enough, that even those that live in my home don't always see it, or appreciate it. 

On a good day, I can put on a smile, look for the positive and plow through the day fixing this, taking care of that, and putting out small fires before the entire structure of the family succumb to them. However, when something big happens, like the last few weeks with David, it becomes very evident that I am only one insignificant human being in all of this craziness and I am completely incapable of being all things for everyone in my little world. That is when my focus is squarely on David, and this is also where everything else starts to crumble from the cleanliness of my house, to the needs of the others who live in my house, to even the attention my dogs think they need. With all of this, I start feeling tremendous pressure to up my game and do better, until my body and mind just start giving out. This is where I currently am and have been all week if not longer. 

The truth is, to be a special needs parent, you have to be built differently because you see and feel the world differently. In David's case, while he looks like a hot mess on paper, he typically does not need or even want a lot of attention from me. Yes, he "needs" me to lift him and do his basic care, but once those things are accomplished, he has his own routines he likes and he is very independent with them. It's not that he doesn't like or love me, because he does, but at times, my overt presence becomes an irritation to him and I can't tell you the number of times he kicks me out of his space. For me, it is a constant back-and-forth of am I doing too much or not enough for him? After a time though, we do get into a routine, until something like major seizure activity takes place, or kidney stones, sepsis, or an abscess rears their ugly heads. Then, that resets us to a completely different mode, a survival mode if you will, where he needs me more and yet really gets to hating my presence when it overrides his independence. Add in the pain, frustration and stress these cause him, along with his inability to tell me exactly how he feels, and by day's end, I think we both want to sit down and cry. There are literally days that I go to bed feeling like a failure to both him and everyone else in my home. 

While David has been a lot of my current struggle, he certainly is not all of it. It feels like since early fall, I have been dealing with something. We of course had family situations that pop up from time to time and trying to keep everyone (myself included) calm and focused on the big picture and what is truly important, isn't always easy here. Then there was my brother. While I knew he was very sick, I didn't know that he would be gone before the holidays. That whole situation did things to me emotionally that I still have not had time to process. Then just the normal stress of the holidays and David developing the original abscess. Nov. 26th was the day it all started, taking us to Dec. 30th which firmly planted him in the hospital for almost two full weeks. 

As I stated earlier, as a special needs mom, I am built differently. I have people ask, "Why don't you go home at night?" or "Can I come up and stay with David while you go home for a bit?" or the kindest of all, "Can I come up and sit with you awhile?" What people don't understand is that David is non-verbal so he can't express himself verbally if there is an issue. Also, sadly, in this day and age, his inability to speak makes him vulnerable to others with bad intentions or a poor or lazy work ethic. I WILL NEVER, leave David alone in the hospital. In fact, I don't even go to the cafeteria. The fact is though, because he is non-verbal and the hospital is usually short staffed, they don't want me to leave. They WANT me there. 

While offering to come up and relieve me is incredibly kind, I can't or won't allow anyone else to do this for the same reasons. If something happened and they don't know Davids noises or signs, I don't want to put them, myself, or David in a situation where there is lasting guilt over an attempt at a kind act. 

Finally, when I am at the hospital with David, I am in a very different headspace. I have spent so many nights alone in the hospital with David, that I don't know how to be with others there. It is uncomfortable trying to make small talk and my brain shuts down and it just becomes exhausting. Even my family understand this and other than possibly bringing up some necessities from home, they don't even come up to the hospital. Weird yes, but it is how we roll in the hospital.

As per usual, David's abscess didn't come without extenuating circumstances. Before the abscess was found, David had been scheduled to have his VNS (which is an implant that regulates his seizures) changed out as the battery was about to die. It was to happen on the 29th I believe. Once the abscess was found and he had infection in his body, the surgery could not take place until all infection was gone. It was believed it would be fine though as he was expected to have enough battery to get through until the first of the year. As we know though, he is still struggling with the infection and the VNS will likely not get replaced until March or later. What this means is that he no longer has the VNS to stop or head off any seizure activity he has, so on top of everything else, I have to constantly monitor him for seizure tells that mean his well controlled seizures might start up again and we have no idea how those seizures might manifest. Yes, an added layer of stress. But that's not all. 

Davids teeth have never had decay, but he has not been able to see a dentist in a couple of years because he has to be sedated for any dental proceedure and because of insurance, the anestesia team at his usual dentist (and the only one who sedates) would not accept his insurance. Then, in November, I was informed that they would now see him again. We were all set to go in, and just in time, as his front tooth had suddenly developed decay, but guess what? They can't see him until all of the infection is gone. And another layer of stress as I pray the tooth doesn't develope an abscess before it can be taken care of. 

Finally, as part of his at home care, David has a PICC line in which he has to be given two IV antibiotics every day. Guess who gets to do that? Yep! That's right! The woman with not an ounce of medical training. Did you know that an LPN is not allowed to give IV meds through a PICC line, but me with no training, is not only expected to do so, but also expected not to set up any knew infection while doing so. Ain't that some sh*t! And it is a process. The meds must be given the same time everyday with saline flush given several times in the course of the process, along with timed push for each med and finishing off with heparin. I literally sweat blood each time making sure I clean the port thoroughly with alcohol before each push and making sure there are no air bubbles in the syringes. To say it is the least favorite time of my day would not be an exaggeration. 

So as you see, my stress is still very high, even as David heals. 

I don't dislike my life, nor do I regret the path laid out for me thus far. However, I am tired. While most of my friends are retiring and planning on vacations and new adventures, I am fully aware that their lives will never be mine. My life will always be waiting for the other shoe to drop, doctors, hospitals, worrying about how much longer my van will hold out, making sure I can stretch my fixed income to pay the bills, and lets not forget.....good old family drama. On most days, I don't even realize how different my life is from others, but coming off the last few months and feeling all of it clear to my soul without being able to have the time or space to process most of it, may just be getting to me a bit. Thus, my weekend in bed/semi vacation. 

It is my hope that after some rest and relaxing my back a bit, that come Monday, I will be back to the usual me who sees things with a positive spin and a go get em attitude. 

Thanks for letting me vent and please don't hold my imperfctions in life against me. I am not strong, nor fearless, nor great in any manner. I am just a special needs mom who has no choice but to fly by the seat of her pants and figure it out as she goes along, and truth be told, I wouldn't have it any other way. 

Until next time.......

10 Floors Up

Well, this is David’s 11th day in the hospital and here I sit. I am thinking that this has been his longest stay to date, and hopefully ever. 

This whole ordeal has been a lesson in patience, prayer and the acceptance that life sometimes gives us things we have no control over. You would think though, that over the years I would have that last one committed to memory. 

It is my hope that tomorrow we are out of here. It will be between storm fronts and will get us out before the temps drop to arctic degrees. He will be going home with a wound vac and a PICC line and he will receive IV meds for 4-6 weeks and the wound vac will stay in place until his wounds are closed and healed (possibly 4-6 weeks also). 

The upside is that David will likely be able to get back to his normal routine and bonus…..he will be getting a hospital bed that will just help life in general. It will definitely help my back with lifting and positioning. And speaking of my back, it is going to be getting more of a workout as Mr. David LOVES the hospital food and has therefore put on about 4-5 pounds since he has been here. Of course he has. 

Our stay here has taught me so many things and allowed me to get a close up view of a lot of things. Since arriving here on Dec. 30th, David’s has been in the ER, surgery, the oncology floor (it was the only place they had beds at the time), MRI (radiology) and finally he was transferred to the neuro/trauma floor when the oncology floor beds were needed by actual cancer patients. 

The transfer from the pediatric unit where we spent all of our hospital stays his entire life before he aged out, to the adult units has been eye opening and to be honest, I was nervous. Everyone in peds knew David. We always saw familiar faces and sometimes the nurses even fought over getting to care for him. No matter how severe the situation, I never worried about his care. I have learned though, that moving to the adult world and hospital units has been a much easier than originally anticipated.

In our stay here, there have only been a couple of situations that left me less than happy, but for the most part, David has had amazing care and awesome staff. My only issues were an aide on the oncology floor that I knew was doing as little as she could to get by and what she was doing was half-assed. Luckily we didn’t even have her a full shift. The other issue was MRI. 

Since we have dealt with radiology here for years, I have always known them to be very quick and on top of things, but getting the MRI that was crucial to get before having surgery was a literal nightmare this time. It took nearly a week, all the while David’s leg had a massive infection. As mom and a frustrated bordering on angry mom at that. I was ready to go have words with the head of radiology myself. Luckily it didn’t come to that, but another day and I would likely have been trespassed from the property. 

In all fairness though, not only did we arrive on a holiday weekend when everyone was short staffed, but Davids was also a complicated case. He had metal and various implantations, that had to be worked around, so it wasn’t just a lack of care or effort on their part, although I do think a couple of things were overlooked which held up the process and prolonged the situation.

This time, because of the new issues (abscesses and infection) we got to experience the wound team who are absolutely amazing and we got up close and personal with the IV team who have been life savers and who will be placing the PICC line. 

David has had such excellent care from the docs, residents, nurses, aides, lab techs, food service and cleaning people. I have been extremely impressed with 99% of everything we have experienced. Most of all, they all seem to really like David and even if they aren’t on his team that shift, they always drop in to say hi. 

Even though this has been a fairly traumatic experience, I have tried hard to hold perspective through it all. I have tried to find the positive in even the most stressful moments and I do my best to always thank those who care for David and be respectful of everything they do. I don’t think these caregivers get the appreciation or respect they deserve and I fully believe that people give their best when they are treated your best.

I have had a lot of time to think up here and appreciate things that in my normal busy life I don’t always take the time to give my full attention to. It has become very clear to me that my grandkids are what keep me motivated and smiling. Being away from them has been tough. They do understand though that David has to currently be my priority and I love them all the more for that.

David in most cases has stayed positive and upbeat, enjoying his tablet and some toys we have up here for him. And as I said, the food here makes him ecstatically happy. He also enjoys anyone who walks in to talk to him, unless of course, they are holding what he perceives to be a needle of any kind.

It has snowed twice while we have been here and since we are on the 10th floor, we have had some exquisitely beautiful snow shows out our huge window. I have even gotten to play with the camera on my phone a bit and took some really pretty pictures of the snow during and after. I actually enjoyed that. 

The days pass quickly up here with lots of people in and out, day and night. Most of the time though, when there is a quiet moment, I just pull into myself and think. Even being a mom of a special child for all these years, there is never a completely comfortable emotional place to secure myself in, and if I try to find one, things like abscesses will pop up out of nowhere and bring me back to the reality that mine and David’s life has always and will always be different than most. There will always be the terrifying moments that come with the territory, but there is also so much joy, laughter and love that scary moments fade away….until the next one comes along.

I know many people love and care about us, but I also feel a great loneliness at times. It is no one’s fault, and sadly it can’t be filled by anyone except the one who isn’t here. Tim and I started this journey together and had he lived, we would still be sharing it together. As David’s other parent, the weight of the scary times as well as the joy of the good times would have been evenly distributed and together we would have understood the depth of emotions that come with all of this. We would have supported not only David but each other thru both the best and the worst. With him gone though, I am alone where David is concerned. Every decision, every crisis, every moment is mine and mine alone to care for him, love him and most of all fight for him. There is just no one else that is his parent. There is no one to hold me up and so I have become very independent and closed off in moments of crisis. I don’t want to do it alone, but I also fight having anyone around. It is a weird place to be in and I have thought a lot about it looking out 10 floors up over the snowy city. 

Hopefully, this speed bump is running its course and soon we will be back home, working our way back to whatever our new normal will be for 2024. 

I hope you all know that I am beyond grateful for anyone who has come up, messaged, called and most of all prayed. Those prayers are huge and seem to be working and I hope to take each of those prayers and pray them forward. 

Perhaps this less than stellar start for the new year has set the stage for something new, something joyful and maybe even something wonderful. I choose to stay on the most positive side of hope possible. 

Until next time….

Hotel Hospital for The New Year

Well isn’t this some funky monkey business?! David and I ended 2023 in the ER and started 2024 in the hospital….and we are still here. Once again I’d like to say that I have no words, but I actually have plenty and none of them are pleasant. 

Since it’s been awhile since I have had a dedicated “David” blog piece, I believe that today should be the day to remedy that. So here we go.

For anyone who knows us or is on Facebook and reads my posts, you all probably know that the last 6-8 weeks hasn’t been a joyride for David. For those of you who don’t know the story, let me fill you in.

If you have never been introduced to David before, he is my youngest son who is 23 years old and has a laundry list of health issues that started when he was born at 27 weeks. He has cerebral palsy, hydrocephalus, he is developmentally delayed, non-verbal, hearing impaired, visually impaired and has a seizure disorder. On paper he sounds a mess, but his reality is he is a basically healthy young man, with a wicked sense of humor, who has to do somethings differently but loves life, love his family, SpongeBob, COPS, and the Foo Fighters. He is funny, active and the heart of our family. All in all, we live a fairly normal life. 

So if things are basically good, then how did we end up at Hotel Hospital? Well, every few years David likes to go off script and do some wild thing with his health that catches me off guard, is scary as hell and forces me to learn “nursing skills” that I didn’t currently have and quite frankly, never wanted. Some of his past oldies but goodies include asperative pneumonia which resulted in sepsis, shunt malfunctions, post surgical sepsis, a year of chronic seizure activity, kidney stones and bladder retention that almost resulted in sepsis and now…..he has an abscess which has tried to run amuck in his body.

Our current story begins on November 26th (2023). David suddenly had a hard spot about the size of an egg, on the back of his right leg below his knee. Of course it was a Sunday so no docs were readily available. My first thought was that maybe it had to do with his CP and his muscles, so I called his on call ortho doc who said to get him to the ER. After one CT and a several hours wait, we learned that the hard egg was actually an abscess. They ended up opening the abscess at the bedside, drained it, packed it, bandaged it and sent us home with a 21 day supply of antibiotics and instructions on when to take the packing out. Then we were on our way.

All went smoothly and he was healing nicely until December 1st when the hardness came back. This was on a Friday, and after a call to his primary care doc who said, “back to the ER you go”…. It was back to the ER we went. After another hours long wait, the surgery team showed up, once again at bedside opened the incision, widened it and dug around trying to get out as much infection as possible. Then, as before, he was packed, bandaged and we were sent on our way with instructions to remove the packing in 24 hours and then only bandage if it was still draining. Oh and to continue the antibiotics. 

Once again I followed the instructions to a “T”, except for the fact that it wouldn’t stop draining. I am not a nurse and my medical skills don’t go much past handing out medicine and putting on bandaids. I am however acutely aware of all the hardware David has in his body from shunts to metals plates and screws and how we don’t ever want infection getting to any of that, so daily as I changed gross and pusy bandages, my worry increased. I was neurotic when it came to his antibiotics and I regularly checked his incision for swelling or redness and took his temp so often he would lift his armpit for me every time he saw me coming. I also exhausted every nurse friend I had and some people I didn’t even know, showing them pictures and asking them questions. I think somewhere deep down, I knew this abscess was not just going to be a one or two and done deal. I hate it when I know these things and am right!

On December 30th, David had been up and in his chair most of the day. He hadn’t acted like he was hurting or anything, but when I laid him down, he grabbed his leg and refused to stretch it out. On further investigation, further up from the incision, on the outside of his leg where he had a previous surgery and he had a plate, it was red and swollen. I knew without a second thought that we had a problem. Back to the ER we went yet again,  where by the Grace of God we hit a non-busy window of time and he was immediately given a CT. This time, the CT not only showed the original abscess still alive and well, but it also showed that it was possibly tracking up his leg. This was not good. It was at this point David went from an outpatient ER patient, to an inpatient awaiting a floor bed and surgery patient.

On December 31st, he was scheduled for surgery and I was given the details of what we were and could be looking at. They had done blood cultures that we had to wait for them to grow over the next three days, so they were watching that, and they were planning to culture the wound which meant we would have another 3 days to see what grew there. His white count was elevated which indicated infection and they also wanted to do an MRI to get a better look at where the infection might be. 

The fear was that the infection might have contaminated the metal, which could mean long term IV antibiotics. Long term meaning for the rest of his life as you can’t kill infection on metal. There was also the worry that the infection might be on or in the bone. This brought us to more serious consequences. Osteo Myelitis. This is a chronic infection in the bone. If this were the case then his ortho doc would be brought in and they would have to decide along with his antibiotics, whether they would try to remove some of the metal, or if the bone were involved, to go in and remove it from the bone OR worst case scenario, remove his leg completely. HAPPY NEW YEARS EVE! I was and have been a mess ever since. 

They went ahead and did surgery to clean out where the CT showed the pockets of infection. The surgery took only about 45 minutes and the surgeon drained both the original abscess as well as the pocket that was on the upper part of his leg. When done, she came out to tell me that they found very little infection, which surprised us all. Most of it was just fluid, but they stitched up the upper incision and put a wound vac on the original spot. 

While it was good news that much of the infection had apparently drained prior to surgery, the fact that his white count was still elevated caused more worry that it was indeed Osteo Myelitis. The kicker is, we can’t know if the infection is in or on the bone without an MRI and as of this moment, we are STILL trying to get that illusive MRI! Yes, I am getting a bit fussy and it has to do (I believe) with someone in radiology’s inability to read information, but I’ll save that rant for another blog!

As of today, David has seen the hospitalist, someone from surgery, infectious med, and the wound care person. She checked the incision which looks amazing and cleaned out the wound vac. THAT David did not enjoy and he nearly pinched a hole in me. Other than that though, both of his cultures are clean and have grown nothing and his white count is normal. Also, in the last 30 minutes, his IV failed, so there are more needles in his future. Poor kid. 

Things around here either crawl at a snails pace or they move at the speed of light. I was just this minute informed that all is a go for the MRI at 9 am tomorrow. Thank goodness. Hopefully it will come with answers we need.

The rest of today, David will get his IV changed, a bath (of sorts), dinner and TV. And let me tell you about David and this hospital food!!!

I think this child of mine is sending me a pretty strong message about my cooking at home. This boy LOVES his hospital food. Every morning he chooses pancakes, hash browns and yogurt. He also wants chocolate milk, but as of today, he has run them out of it. For lunch he always chooses a deli sandwich with turkey, cheese avocado and tomato, potato soup, steak cut fries, chocolate chip cookie and chocolate milk. Supper is chicken tenders (he doesn’t typically like chicken tenders…but whatever), steak cut fries, Mac and cheese, chocolate chip cookies and…..chocolate milk. When he knows it’s time for me to order he starts pointing towards the phone and he is not happy until it’s here. Silly boy! I guess mom is going to have to up her food game at home.

So now we wait. Tomorrow should give us the answers we need to move forward. Who knows, we may even be home this time tomorrow (hopefully before the snow). If you pray, please say a prayer that David’s bones are not affected by the infection and if you don’t pray, could you please do it anyway…just this once….for David?!

Until next time….