This morning I went to make myself an egg and about a ½ dozen of them fell on the floor. All of them except one breaking in front of the fridge. As I blurted out a few expletives I quickly started my clean up and I started to think. Could I or would I let this ruin my day? I was mad, this sucked, and cleaning up eggs was NOT what I wanted to do. But then I realized – there is still 1 egg left which is all I wanted and needed for my breakfast. Also, the next thought that popped into my head was – my child is dead. What is worse than that? Eggs falling on the floor ALL over is not the worst thing that can happen. My. child. is. dead. Sad that I now qualify how I’m going to react to something because of the pain I feel of losing Lydia. But I do, and it also gets me to think about the positives I have in my life. This morning it was (knock on wood) I have my health and I have my 1 egg. No, this would not ruin my day. My child is dead.
In the 7 years I was a special mom I met a lot of wonderful, inspiring people. For instance, a group of women came together through various sources and we found ourselves sharing our similar but different journeys with special needs. While we sipped cocktails (sometimes coffee but this was rare) we learned things from each other we would have not otherwise known. Things we didn’t or couldn’t learn from a book about the special needs world.
I cherished these bonds I made but more than that I admire these women. Immensely. These women handled more on their plate than I ever thought I did. Small examples beyond the ENTIRE scope of what they handled were the following: one mom getting up to suction her child in the middle of the night, sometimes only getting 2 hours of sleep at a time. Every night for years on end. That same mom having her son go through getting rod extensions in his back every few months, one mom struggling with schooling for her autistic child and being forced to find a place for her when her school decided they didn’t want her, and one mom handling her daughter’s difficulty in eating and sitting in the hospital doing therapies for 8 hours a day sometimes only getting a few ounces of food in her daughter via mouth ALL day. This is only the tip of the iceberg for only some of these moms and I could go on but you get it right? BIG challenges.
My time with them was invaluable. Not only did it allow me to learn from them but also for me to vent about what I had on my plate but when my mouth was shut and my ears were open they put my life into perspective…often. They probably didn’t even know it. There would be times I wanted to just throw it all out on the table (of course not tipping over my cocktail while doing this) but just vent about all the hospitalizations with Lydia, her endless therapies, her physicians that sometimes didn’t listen and how extremely tired and emotionally exhausted I was. But, if I were to gauge or quantify challenges there were times I knew I couldn’t “throw it all out there” because they may be going through something far worse or far more challenging than I was at that time. There were times my challenges were no comparison to theirs and in those times I thanked God I had less and prayed for them. I kept my mouth shut about my struggles because theirs put my life into perspective.
The best part about these women was their smiles. They put a smile on even in the midst of what would seem like disaster or impossibilities were standing in their way. I laugh at one who never seems to get upset and always seems to be the eternal optimist with a smile followed by a joke. She swears she isn’t always this way but I think she lies. These women – they don’t let all the little stuff get to them because they have BIG stuff in front of them every single day. They and I had big stuff every day. Their Our life is/was filled with therapies, endless physician appointments, surgeries, school IEPs, and the list goes on each and every day, let me repeat…each and every day. We didn’t have time to worry about our coffee getting cold, the eggs spilling on the floor, the weather not as we had hoped, our car breaking down, our kid’s team losing their baseball game or our shirt having a spot on it when we went out. Our lives are/were filled with BIGGER worries and the rest is/was all just noise.
A week ago I went to my closet to get a shirt I liked only to find it wasn’t there. I liked it – it was hot pink, free flowing and just an all-around nice a casual shirt. I looked that day for the shirt until I was late for where I was going and decided I would look another time. Well, I looked at another time, in fact, I tore my bedroom apart, my closet, my drawers – yes, everything where a shirt could hide, organized my shelves in my closet, matched up a drawer full of socks – only to find that I didn’t have the shirt and a few bags of things to go to Goodwill. At one point my husband walked in asking why clothes, socks and drawers were strewn across the room. I shared my dilemma. He replied “was it expensive?” No, that wasn’t the point I said – it was a favorite, I liked it and I WANTED IT. He quickly reminded me it was JUST a shirt and I have other shirts and there was no need to be this upset over losing a simple shirt. Sadly, I agreed and decided to close up the cleaning (recovery) effort. It was a little thing. But in that moment, without Lyd, without the tough challenges I use to have daily I was not reminded that I needed to let the little things go. Let the shirt go. It didn’t matter in the scheme of life. My child is dead.
I hope you get what I’m saying here. Since Lydia’s been gone I obviously look at life a whole lot differently. Way differently. Most days, I realize what IS important and what is not. I have found myself in controversial conversations about something I feel passionate about but feel myself backing up and deciding if “arguing” just to prove my point is important. Most times, it is not. I walk away to keep my sanity because it isn’t worth the negative energy I feel firing up inside my belly and taking over my mind. Most times over something that can’t be changed just by myself anyway. But I sometimes find myself falling back to my “pre-Lydia days” where the little things get to me and I have to reel it all back in – like last week my kids full of mud at our home building site only to have my husband remind me “it is just mud-it will wash off.” Again, he was right.
My friends I mentioned above – you rarely hear them complain about their unhealthy child, they rarely grumble about the complex life they lead. They use their platform to educate, share and speak positively about the good that is happening with their child. They keep the negativity at bay and only let it out when it has boiled to the top and they can no longer hold it in. But you RARELY see this happen. I always use to hear “God only gives you what you can handle” and would roll my eyes at this thinking it was a crock but as I moved on in my journey, met these women and now have experienced the death of my child I whole heartedly agree with it. I see some people complaining about the little things that I look at them and think “if you can’t handle the little things how you could handle a sick child – EVERY DAY?” They couldn’t.
I guess what I’m saying is this: why are we not happy with what we have, especially if it really is ok? Why is there is so much negativity and pissing and moaning from those that don’t even have challenges or the challenges aren’t ones that can’t be easily overcome? Why is it I hear parents with healthy children/husband complaining about how busy they are, how many sports their children are in, how they can’t get grocery shopping when they aren’t even trying to fit in therapies, work, dr’s appointments and surgeries? I’m not talking just about those with children or those without. It is everyone. In the last 6 months I have friends who lost a father to cancer, another friend with a relative with cancer under the age of 50, two friends who have had a double mastectomy (one under the age of 45) a friend who lost her baby 32 hours old and I lost my child. Why is it when someone isn’t facing a major challenge they find it so easy to complain about the “noise or little things life brings them?” Why can’t they instead rave about the good things happening and let the rest all go?
Every day I find myself driving down the road or staring at my computer screen wondering how I got here. Yes, I know, by my own choices. I got married, had children and it just so happened she was a rare genetic child. But at age 40 I have cared for a special needs child and buried my child. It seems so out of place and not in the right order. Our world we live in is one of replacement. Today we can fix an ailment with a medicine, we buy new electronics when the one we have fails, and we send food back to the chef when it isn’t cooked right. But yet so many people find themselves crying over spilt milk. They find themselves complaining about the little things that are JUST NOISE and unimportant.
As I said to someone recently “dead is dead”. They told me later “wow, I never thought about it until you said it but your right – dead is dead.” She, herself, started crying about a relative with cancer and said if something happens that relative is NEVER coming back. Sounds basic, right? But when it is someone YOU love so much, someone you have invested your life and your energy into – you realize that dead IS dead and for me, I can’t replace my only daughter, my Lyd, she is never coming back. But yes, the world around us still complains about their menial problems. The problems that aren’t game changers, the ones that don’t matter. Our negativity breeds negativity and I want to scream some days “Wanna trade lives? Want mine and then tell me how horrible your life seems to be?” meanwhile thinking the whole time about my moms who may have a situation far worse than mine or the friend with cancer fighting for her life for her children and husband. What RIGHT do we have to complain when someone else has a situation far worse than our own? I guess I’m saying this– there are many out there with bigger things on their plate and far more challenges than the complaints we carry with us and post on Facebook. Often complaints we bring on ourselves like over scheduling our children or not taking care of our own health. But, just like my special mom friends who lead far more hectic and challenging lives – I try, really try to put my things into perspective before I open my mouth. I guess the big question is…do you?