Here are some Realistic Expectations:
Grow up and get married. Get a job you don’t totally hate. Go to the beach a few times in your life. Someday buy a car that isn’t a total lemon. Have kids. Watch them grow. Become empty-nesters and start traveling. See everything you can. Look into the eyes of your loved one when you’re old and say, “Hey, we had a good life.”
I am fully aware that for most of us, as we age, certain aspects of seemingly realistic expectations become shattered and disappear. We all laugh and say, “I’ve stopped having expectations!” and “I sure never thought I’d be HERE” and “If you’d told me five years ago… I never would have believed it.”
I don’t know many people who lack some version of this narrative.
And right now, I’m living my own version — but the funny part is (joke’s totally on me), I thought I’d already gotten past my hard thing.
I’d already been divorced and THEN thrust into a blended family – a stepmother to THREE at the age of 26! Who could have ever imagined such a thing. The things we went through. The things my (now) husband and I went through individually before we met… boy. We had our tough stuff. Surely we’d made it to the other side and would now reap some benefits of that.
Then 2019 began.
Well, this year has been a doozy. I have been hit with my two worst fears. If you’ve read my blog at all, you know what they are. If you’re new here, let me explain further.
In January of 2019 an eye doctor confirmed something I hadn’t even considered remotely possible until the age of 29 when I started to notice changes in my eyes. A diagnosis of Retinitis Pigmentosa – an inherited eye disease that will lead to eventual blindness. And I’ll most likely be legally blind by the age of 40.
The day I heard those words I came home and cried in my husband’s arms in a whole new way. I wailed and sobbed and began the process of grief for a life I thought I could count on. Meaning, a life where I could see everything, all the time, and generally be able to get around without much help.
Next came the Other Big Disappointment of the year. We’d already been through a whirlwind of ups and downs and hopes of treatment and different sorts of advice from the clinics and our insurance. And then BAM. It all went away. The hope of it being possible fled from my life with one letter from a nurse after coverage was, in the end, denied.
January and July held my two big disappointments in life. And even just last night, I cried in my husband’s arms yet again. Those wailing sobs of ache for a child I not only imagined loving, but do truly love with every part of me. Yes, it is possible to love a child that never existed.
When my eye diagnosis happened, a good friend of mine sent me a book right away. It is Lysa TerKeurst’s It’s Not Supposed to Be This Way. I read it on and off throughout the year so far and finally picked it back up about three weeks ago. The second half of that book cut me to my core, broke apart everything I had left and gave me some kind of strange hope for the future. Each page held some unique sentence that forced tears to gather in my eyes. But the page that absolutely left me breathless, stunned? Unable to stop the flow of tears in order to keep reading? The page that said:
Usually, the most disappointing realities come from the most realistic expectations.
I’m not sure why this was the sentence that stopped me in my tracks. The one that took a fairly calm Melinda and turned her into a heaping mess in my husband’s arm in a matter of 11 words.
Maybe because the cruelty of our life’s disappointments hit me. It isn’t that most of us were hoping to become billionaires and when that didn’t happen, the process of grief set in. Most of us aren’t hoping to travel to every single country on the planet and when we never make it out of the United States, we are simply devastated and wonder why our lives turned out the way they did. We watch the Olympics, and about 99.99% of the population is in awe, not crying our way through wondering why we can’t do that same gymnastics routine.
No. Most people I know who’ve been through total and utter grief, shock, depression, disappointment and heartache have had realistic expectations pulled out of their grasp. Expectations like giving birth. Like being able to see. Like growing old with their partner. Like not being betrayed. Simple things… nothing extraordinary.
Having these kinds of expectations suddenly turn the ordinary into something extraordinary, though. With every pregnant woman I encounter, I see a miracle – a total and utter miracle. With every person I see who can, well, see… I see freedom I will someday lose. We already keep a flashlight AND a headlamp by the door for me. I can’t take the dogs out in dim lighting without the aid of a light.
For others, I know that my own reality is a miracle. I have a loving, devoted and strong life partner. Not everyone has that. I know this and I am thankful. Not everyone has a beautiful home to return to. For this I am also grateful. Not every blended family has love and joy and laughter like ours does… for this I am SO unbelievably grateful.
Though each of these joys, at least right now, is matched with a pain that sears inside of all of the time. I can’t see a family right now that doesn’t remind me of what I have a 1% chance of having. I can’t see someone without my eye condition without seeing someone who will never have to research white canes. It’s the stage I’m in and another gift I have is accepting the process. I know this level of grief will not last forever, but it sure is hard to go through it.
Back when I thought my divorce was my “big hard thing to get through”… I wasn’t doing as well as I am now. Though this is harder and more difficult and MORE life altering, I am going through it with love on my side. I am going through it without crippling body image issues.
Though I am losing my vision, I can see who I am very clearly. And this time around, for this particular stage of life, I am so so grateful for this.
News comes at us to tell us what we are dealing with. Truth comes from God and then helps us process all we are dealing with. (It’s Not Supposed to Be This Way)
This was another quote I absolutely loved from the book. I heard the news at the eye doctor that day that I had RP. I heard the news from my clinic that our insurance coverage was denied. But the TRUTH is that I am not alone – though in my darkest and most vulnerable moments this is the lie I fight off the most. I am not alone, but very much loved and protected. By God, by my husband, by my family and by my closest friends. I am surrounded by more love and support, joy and laughter, companionship and coziness than any one person deserves.
So here I am, trying to get through the rest of today without any expectations, realistic or outrageous. All I have is faith.
Love, Lou (who is wearing her blue light protecting glasses as she writes because GOTTA PROTECT THOSE RETINAS)