Love for Today

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Tonight the phrase “live for today” has been ringing in my ears. I’m in significant pain. I have rheumatoid arthritis and it has been destroying my joints quickly over the last year and a half. I suspect I have had it longer than the year and a half since I was diagnosed but the symptoms that led to the diagnosis were too much to ignore after I stopped nursing my fourth and last child. It’s been quite a ride since. My rheumatologist thought I had a pretty mild case until last summer when my symptoms became severe. The disease has made it it’s business to deform my hands, destroy my shoulders and knees, and cause me daily pain.

Tonight I am once again in my bed watching a movie, writing, resting and desperately doing anything to keep my mind off of the pain. While my family plays downstairs, I am up here in pain, wishing the disease would go into remission. I know I am not alone. There are many people just like me who are wrestling with disease, desperately wishing the pain would stop. Each day I’m in pain reminds me of the damage the disease is doing because the deformity of my joints doesn’t happen without pain.

Pain is all I think about these days. How much pain will I wake up in today? Will I be able to get my housework done? Will I be able to handle one of my son’s serious seizures? Can I get through the day? There have been numerous days when my little girls played a game on my bed, danced around my room, and seemed more than understanding when their mommy has been unable to get out of bed. Now that summer is here and all four are at home, how will all of us handle one of those inevitable days?

Today a picture did me in. It was a photo a mom snapped and posted on social media of her daughter jumping into the pool. She captioned it something like this, “my daughter is getting braver during her swim lessons”. It broke my heart because none of my children have had swim lessons. Not one of my children from nine years old to two knows how to swim. The excuses for which have amounted to one or all of the following; too many kids for the pain, the added stress of taking a special needs child, and financial stress. My kids miss out on a lot and I know I am to blame. Now that I have rheumatoid arthritis, I’m not sure if my son will ever have the opportunity to hit a home run during summer t-ball or if I will be able to see my daughters in a dance recital. Disease has not only robbed me, but each one of my kids. On the other hand, I get to spend a lot of time with my children. I get to enjoy every last minute of their childhood and I wouldn’t trade that privilege for anything in the world. I know I can’t give them all the opportunities I think they deserve, but my husband and I have tried to give them mommy. I have been here as much as possible since our oldest was born. I had a part time job for five years but quit to take care of our medically complex child three years ago. Mommy may not be able to take them to all the places they want to go, but they know I will always be here for them.

These thoughts brought me to “live for today” and was finished with the thought “because tomorrow is never guaranteed”. Nothing drives this point home quite like chronic illness. I never forget that my disease could be damaging my organs at a speed equal to the damage it has done to my joints or epilepsy could take my little boy as he sleeps at night. It’s hard to take the advice of others who think I should “keep smiling” or say, “hang in there!”. It’s hard because no one can fill in for me and take the non-stop mental or physical pain. One compounds on the other until I finally break. About once a month my husband can expect me to cry through a box of tissues. Every last worry comes spilling out and I blame myself for all these thoughts and more. Maybe it’s then when the reality of our life becomes abundantly clear; so much has changed in very little time.

It wasn’t that long ago when I held my newborn son and he was seemingly healthy. I looked at him and saw a lifetime of memories in his little eyes. I could envision a future filled with all of those things a mom expects. It took a ten second seizure to change all of that. Our little boy had an incurable disease and the future didn’t look as certain. Two years ago I could hold each of my children and not think twice about how I was going to get through the day. Now my children crawl on my lap to be held and they know they have to be careful around their now fragile mother. I wake up wondering how hard it will be to get through the day. Did I really appreciate everything I had before it changed? Do I appreciate what I have now? I hope so but since I know how fast things can change, I try to thank God for today. Today is all I have and each second beyond that is a gift. I’m still struggling with each second but I’m glad I have another.

Disease can change the future we may have anticipated for our son, my physical appearance, and the way we look at life but it can’t take away the love in this family. Disease didn’t anticipate unconditional love. We don’t have to guess if love will prevail in sickness and in health, it already has. There is no doubt if my husband will love me even if I don’t look like the woman he married because I already don’t. Our children will never wonder if something they will do will alter our love because they have witnessed it prevail through it all. I think I should change “live for today” to “love for today”.  Disease can take what it will but it can’t take our love, nothing can take that, and for that, I am truly thankful.

*d*

My Craft Wife

It’s a pretty helpless feeling watching someone suffer physically and being unable to do anything to make them feel better. You can speak all the encouraging words you know but it doesn’t do a thing for the actual pain. I’ve been witness to the premature wreckage of my mother and more recently, one of my best friends and co-author of this blog.

Mom has a bad back, neck, and joints among a slew of other issues probably exacerbated by the medication she takes for said back, neck, and joints. I can’t pinpoint when she really started to go downhill but I remember her back and neck surgeries starting somewhere when I was in elementary school. Every year afterward seemed to get just a bit worse than the previous. Then she wound up in an emotionally abusive relationship and spent a great deal of time in bed. Depression knocked her down and when she finally removed the abuser—after 8 years—she’d been sedentary for so long I think it had ruined her. What the boyfriend hadn’t robbed from her quality of life, her Degenerative Joint and Disc disease and immobility had helped itself to. He’s been gone for five years and she is only a tiny fraction of the person she used to be.

And it hurts. Her pain is physical and I can’t begin to understand. What I do comprehend is how heartbreaking this has been for all of us. The pain has robbed her of so much. She can’t keep up after her house like she should, she can’t do yard work, she can’t even carry in heavy groceries. She battles depression every single day and every day she’s able to get out of bed, I’m grateful.

With my history or chronic depression, I know how I would react were I in her shoes. I encourage her and try to help when the chaos allows, but the truth is, I’m weak. I couldn’t handle what she deals with every second of her life.

Now I see *d* fighting the same monster and I break inside. I want to be able to help, to make her more comfortable. I know there is nothing I can do for the physical aspect. All I can do is be there to listen and to try to make her laugh. I know she appreciates my efforts but it doesn’t make me any less angry. She’s not even 35 and so much is being taken from her. We’re the same age. I gripe about a sore back from cleaning houses and she just wishes she could clean her own house. It’s not fair. She’s young and a momma to four kids she doesn’t get to enjoy like she should. Still she stays strong because she has to. Because it’s who she is. Because she is braver than I will ever be.

When she vents to me about the pain, the debilitation, I don’t always know what to say. There are only so many ways to say that you’re sorry. And no matter how literally sorry I am, the word isn’t enough. Not for me.

She is my Craft Wife and I am hers, silly nicknames for two women who love Hobby Lobby and the craft of writing. We also love each other, as great friends who share the darkest parts of their hearts with each other, often do. If I could do anything for her, I would take away the pain. But since I can’t, I will let her know that it’s ok if she’s not always strong. It’s ok to feel the anger and sadness and mourn for the things she’s missing out on. It’s alright to feel robbed. She’s handled every curve ball life’s thrown at her with a grace that I can’t begin to emulate and she deserves to fall apart from time to time. She has people who love her who will scrape her back together to face another day. And as long as I’m around, someone who will whisk her away for greasy bar food, conversation, and trips to the Hobby Lobby.

We're a couple of sketchy characters...haha
We’re a couple of sketchy characters…haha

~L~

Life’s Sucker Punch

Have you ever been hopefully optimistic after a long line of difficult days? Some days aren’t easy in my home.

My youngest son has a rare and incurable disease. He is multi-disabled and suffers from a number of different issues because of his primary diagnosis. He has been having a number of good days lately. He has adjusted well to his first year of school and has been gaining ground developmentally. Two of his many diagnoses are Autism and intermittent explosive disorder. Needless to say, he is prone to meltdowns, sensitivity to everyday stimuli, hitting and screaming. Aside from having some neurological setbacks, he has been communicating more efficiently, interacting with his siblings and sleeping better. I have been quite optimistic. This is against my nature. I don’t call myself a pessimist, just a realist. Realistically, life for us will be a bit more difficult. Today snuffed out my recent optimism.

Since having my fourth child, I have been having increased problems with my joints. I have issues walking up and down my stairs and more recently, using my hands for simple tasks. I visited the doctor and my blood was taken. I got a call this afternoon that confirmed my suspicions. I have Rheumatoid Arthritis. It is still sinking in. I keep thinking of a number of people I knew who suffered with RA. They had disfigured fingers and could not get around without some assistance. These people were twice my age. I know this is a progressive disease and I am still young, but I once again can’t imagine the future. How will it be in several years when I will be caring for my son and he will most likely be twice my size? I suppose I must continue to live for today and take steps to ensure a better future.

I tell myself frequently that life is about trade-offs. Some people seem to have it all but those people may suffer deep emotional stress. Others may live without life’s essentials but are full of joy. I sometimes feel envious of the seemingly perfect family pictures on social media. I really don’t know what their life is like at home. I imagine my family can also look seemingly perfect. In this instance, a picture may not say a thousand words, just hide them.

So I ask myself if I can live with my trade-off and if I can once again find joy in what I cannot control. Can I find the purpose in yet another disappointment? I am sure I will, it will take some time. It will take time to once again find optimism. This most likely will happen after adjusting to my new normal. Life will continue to hand out the sucker punches, it is a good thing past difficultly has me prepared.

*d*