She’ll Always be Baby to Him
She’ll Always be Baby to Him
He walks through the door to a woman on the floor. She’s sick now, and he never knows who he’ll be coming home to. The house was built with children in mind. They left a life of adventure behind to save and to plan ahead for a wonderful family instead.
She was still a girl when the illness took hold. But neither of them let go of their goals. And they kept looking on to a brighter tomorrow when all of thier visions would come into view.
More health concerns, the bills piled high, the doctors said she’ll get worse through the rest of her life. And the dreams that once made them laugh were fading into thier past.
Oh, but the one hope that they couldn’t ignore was to start a family so they prayed to the Lord. But her body took a terrible turn- the house went dark- their last dream (like her pain)- it was burned.
They believed that their love would always survive, but the emptiness was an angry kind that filled the corners of their home with doubt. Without the promise of a little one, dreaming just didn’t seem much fun for the couple who had survived everything–until this.
Now a grown woman is like his child and she wonders if taking care of her will drive him wild, but she keeps on praying love will see them through. The loss they mourn is another Chronic Pain that they must both endure, but Hope and Love they cling to just like glue.
-A Body of Hope
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This striking image is courtesy of artist Brett Williams. “Isole” is one of Brett’s chalk works. Please visit one of his pages to purchase an original piece for your home or a gift.
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Posted on January 16, 2015, in Art by Brett Williams, Caretaker, Chronic Pain, Marriage, Poetry and tagged Baby, Being Married with Chronic Illness, Being Married with chronic pain, Caregiver, CFS, Chiari, Chronic Illness, chronic migraine, Chronic pain, crps, Dysautonomia, endometriosis, Family, fibromyalgia, living with chronic pain, loss, marriage, MS, poem, Poem about chronic illness, poetry, POTS, relationship, rsd, RSD/CRPS, spinal cord injury poem, Spoonie, Spoonie poem, traumatic brain injury. Bookmark the permalink. 12 Comments.
aBodyofHope 
OMG this just breaks my heart… you will pull thru and post of your dreams will come true.. just keeping hoping and praying.. you are always in my thoughts..
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Thank you so much for your response and encouragement. What you said really means a great deal to me.
I wasn’t going to publish this post, but I have been writing so much about courage lately- decided to take some of my own medicine. Your response right away was so soothing to me. I don’t want anyone to feel sorry for us, but just maybe others will relate and know they aren’t alone in something so difficult to discuss.
I’m so excited about your blog! Wonderful to have another writer in the “Spoonie” blogging community 🙂
❤
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Mary, my beautiful friend, I would have started crying uncontrollably, except my boyfriend is sitting right next to me and he would have asked why and this hit way too close to home to even take the chance of talking to him about it. I couldn’t stand getting that no response thing that he does that makes me want to die.
I am so scared, so terrified of his reaction if I can’t make good on this one promise we made to each other in the very beginning of dating. The thing he wants most out of his life is to be a dad. And I want to have his kids, that’s what our whole life is built around just as you described. We have put everything into bettering ourselves and our situation for our future child, only to feel that possibility get farther away instead of closer.
I’m heartbroken for you, reading this. Because I know you have the perfect soul, the perfect love to share with a child, and I know that there is no comfort, no material thing to fill that void. My heart breaks too for my boyfriend that I’ve taken so much away from what was promised to him already, I can’t be the reason he doesn’t get to be a father. I just can’t. I’ve ruined all else, I won’t ruin that. But I might. And I can’t. It is truly the one thing that I cannot face, cannot think about, know I can’t get over. All this anxiety around children now, and the pressure and disappointment in myself is similar to how I feel when I’m too sick for days or sometimes weeks to have sex. Like I just take and take things, but never give anything back.
My codependency is not sexy and I know that. My anxiety/phobias are not cute, and I know that. My whining and chronic severe pain make me a gigantic burden, to everyone around me, no matter how hard I try to help my friends get the resources they need to survive, I still didn’t do as much as I would have done before I was sick, and I still feel like a huge disappointment instead of a help. Even if I was the only one to reach out to someone, I still hate myself for not doing enough. My history is not fun to talk about and I know that. My chances of being miraculously cured are slim to none, and I accept that for myself, but for some reason it upsets me even more how it effects Chris’ dreams and his plans, than it upsets me that it ruined mine completely.
This hit me so hard that I had to put it aside, twice, before I felt like I was strong enough to finish reading without bawling. This post is loss, anguish, and all things difficult to talk about with illness. And you caught me so off guard.
I know it must have taken so much courage to post this, so much. More than I have or will ever have. I admire you so much for saying the things that are truly eating at your soul. I do not have the words to express how much strength I personally will gain from this brave baring of your soul to the world. I hope it strengthened you as well, to be able to write the most difficult post I think you have written so far. I do not know, maybe I am wrong and it is not. I just… I will be back later when I get to finish thinking on this.
I realize now that I have to find the words to talk to my boyfriend about this fear, even if he doesn’t respond… but I do not want to. It will be a long time coming, I can’t do it now, nowhere near strong enough to hear what his response will be, or to put up with the great silence that builds between us after I try to talk to him about something in our future or past or just in our way, and receive no reassurance, no acknowledgment at all usually, even after multiple attempts and direct requests. A grunt if I’m lucky. These days the resentment just below the surface in our relationship grows while the love is not, and that is unacceptable. It is my responsibility to get to the bottom of our struggles, and soon.
I do not want to say all those “reassuring” things, like “it will be okay” or “at least you know you gave it your all” or “maybe it will happen one day” because you’re better than that, and because we are so far beyond platitudes now. This post is not for patronizing cliches, it is about emotional honesty, pure and simple. There is very little I can say that is reassuring, but I will always acknowledge your anguish and honesty. Just know that I love you very deeply, and I still see the good that is to come in your future. You are not helpless, you have proven that time and time again, because helplessness is a state of mind, not a physical state. You have shown the world how fiercely independent and determined you are, as you have shown your husband time and time again, and no one in their right mind could doubt your intent to beat RSD and POTS.
I wish I could be by your side right now, because maybe I could convey what your writing this post means to me more accurately, the huge impact of it, although I doubt it. I would be holding your hand sobbing right now though.
❤ I love you sweetheart, in all you soul-baring, brave, bad-ass glory.
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wow when I read your response to Mary I cried like a baby… I am so sorry for you both about your dreams of being a parent and what it has done to you both.. I was 38 when injured and if it is any constellation my kids were 8,10,12 and lost there mother. I spent 5 years in a hospital bed in my living room unable to drive them anywhere, go to any sporting events, cook dinner, do homework, or tuck them in to bed. I feel I was ripped off so badly but most important so were they. They have grown to adults and the oldest 2 are college graduates but the youngest is an addict in rehab for the 4th time. i blame my RSD and disabilities for it. I was there when she needed me, i was sleeping, or dealing with pain. I am so sorry for both of you. This disease robs so much from us. I have just started my first blog and have no idea what i am doing but do want to get out my anger in a more productive way. Thanks for responding to Mary’s post… your response was amazing Jessi….
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I just want to thank you for sharing this part of your story, as I’ve been thinking of what you said a lot the last couple weeks . I’m so sorry you’ve been through so much that time cannot give back to you and your family. It’s true that there is no good time for illness to strike.
This was not your choice, but all of the love you show your family is. They know that. That’s the gift you choose to give them today. ((Hugs))
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Oh Jess,
You are such a blessing to my heart (and I have tears running down my face after re-reading your response so many times).
I know I won’t be able to answer you the way you deserve though. You won’t get a response from my heart-truly, because my heart is so closed to this subject. This one topic is in a cage.
You though… you reading and speaking truth to me, letting me know I am not alone in my silence. Us both- never taking the lid off of this part of our hearts. Like maybe this part of us will go numb and die if we just turnicate this piece for long enough…
And in reading your response was the same. My husband walked in as my tears started flowing. And I had to stop and put your precious words aside before he would ask- because I cannot ever- never can I answer for THESE tears.
This is the hardest thing I’ve published on this blog. I wrote it a month ago and wasn’t going to post it because I didn’t have the courage (my mantra these days). Then I thought of you and others who might be like us with this loud bell ringing inside of a jar in the corner. Maybe someone would feel less alone if I post it- however I don’t want anyone to feel sorry for us. No matter what, this is not the worst thing. It’s a very painful and difficult thing, but it is absolutely something that I know we can overcome with happy lives together in love. I can see it for us if that’s what God has planned. It doesn’t mean there isn’t a great deal of pain and loss that comes with that journey.
I feel your hand in mine Jess. And I wish you could feel this hug I’m sending you. If you were not here walking this road with me, I wouldn’t have had the courage to post this today or maybe even write it at all. And I needed this out of my mind and body!
You have the ability to bring life and warmth to others through your words, and to inspire in amazing ways. Therefore, your guy has a formidable Bad-Ass opponent when it comes to shutting you out, girlfriend. When his problems are yours and yours are his (not matter whose body they are in), it’s all 50/50- and not for you to take ALL on your shoulders alone. I feel that for you, and I mean that for you, and yet, I know on this topic that I wrote about today, I do personally still have trouble with the guilt.
Thank YOU for having the courage to open up and talk about things you maybe never have been able to before. The journey isn’t over… Just please, please remember that you are not alone in this. In this silent unspeakable thing. And thank you so much for being a soft place to fall today. Love you, girl ❤
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I think that if this hadn’t hit so close to home, there would be, many, many more comments on this. Who knows what to say in the face of this loss? I certainly don’t, but I find enormous comfort in your words, and I have to thank you for that. And for unlocking this mysterious, shut-off part of myself that I have never had the courage to examine before.
I did not answer you with the true anguish that I have locked away either, to be completely honest. I don’t know how. It grabs at my chest and makes my stomach feel like I’m plummeting to the ground on a rollercoaster. It rips at the edges of my consciousness, but there are not words for it.
You are right, this is not the worst pain, there are some far greater even in my own past. It is a terrible pain, but it does not negate the possibility of a happy, full life. I do understand y it stays so deep, and so far out of reach from me speaking of it, or discussing it with my boyfriend.
In a year you will read this and marvel at the woman who spoke of something no one else could handle talking about. I sincerely hope that I can find the courage to reblog this, to be a part of the upcoming discussion that this post will spark within the spoonie community, but I cannot yet. I completely understand why it took you so long to decide to post it, but by hitting the publish button you may have saved lives. No one knows how to talk about this even though infertility or inability to carry a child to term is a theme with many chronic illnesses, it is rarely discussed within the context of ‘things that slip through my fingers the sicker I get’. It should be, though. I have friends who are pregnant and having five, six, seven seizures a day, one friend whose liver is shutting down while her brain stem and spinal cord grows more and more inflamed, another who has just told the world that the doctors have given her 6 months to live. Those pains are more enormous than this loss, but yet, this one we are ashamed of. I know why, but it’s hard to talk about, it really is. I never wanted kids until Chris came into my life, and then ohmygod everything was about our future kiddo and what kind of parents we planned to be. It still is, but in a bittersweet way now, at least for me. I have had many a breakdown in the length of time in between now and Chris telling me he didn’t think I would be a good mom with the way I was not helping around the house enough or able to drive to the grocery store. He doesn’t know I still think about how he said that, and wonder if he still thinks those thoughts, but I am worried about it still, every day lately.
The flip side is that others, most definitely including you at the top of the list, have shown me that shame is counter-productive, that I am free and will not be punished for speaking my own mind, and that just because people tell us we can’t do something, that doesn’t make it reality. So hopefully I will get over myself enough to reblog this, and soon. I want to share this with everyone, but I am afraid to be asked why I reblogged it, why I relate to your words in such a raw and deeply personal way.
Still so awed and thankful that you started a conversation that the spoonie community can be oddly quiet about! A necessary, but scary, conversation we should be allowed to have without shame.
Way to make the shame your bitch.
(Because I am out of eloquent wording for the day. Hands keep spasmsing all of a sudden both of them just seize up and then do whatever they want for a few seconds, I think it’s just letting me know I’m done typing for the day.)
I love you, i love your courage, and I love how your inspire me to be less afraid of the dark corners of my brain.
*hugs and spoons for days*
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“Way to make shame my bitch” ha! That’s A-mazing! You should put that on a bumper sticker or T-shirt or something. Love it.
I just really want to thank you for speaking up and giving my jagged raw feelings a softer place to fall, where I wasn’t all alone.
I don’t think I was prepared for the conversations afterward, but it has been a positive step in dealing with things I’ve been avoiding. In reality, I think you and I both are aware that we are still young enough for things to change.
In just 5 years we could be living completely different lives with very different bodies also.
I have a friend who is an older woman who never had children, and she and her husband have traveled the world, do humanitarian work, and live happy, full lives. I know it can be done with happiness and joy.
Like you, I never wanted a family until I fell in love with my husband. But somehow sharing dreams of the future became so important in our relationship. I think our relationship needs to become the most important thing in our relationship, you know?
Hearing that Chris told you that he isn’t sure you would make a good mother hurts me to hear, Jess. Those things you struggle to do are not your choice, they are your illness!! And doing things like cleaning up- he can also help with. But a mothering, nurturing love is something you already show everyone in your life.
Please, please, please know that. No matter what he has said, you must know that within yourself- please don’t let anyone else take the essence of what you know to be true about yourself away from you.
I don’t want my concerns to put you in a dark place, Jess. I’m trying to have faith that if it’s in God’s plan, then the strength and wellness will come in the time it’s meant, you know? And if not, that the strength to deal with the fallout will also come.
I’m sorry you are in the helpless position of waiting your body out for your dreams to come true. But I see you trying to make new dreams for yourself and that makes you so incredible.
Lots of love to you. I hope you had a happy birthday xoxoxo
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Everyone who has responded so far has my heart breaking. And Mary … wow! I think of you as a friend I have not yet met but hope to, very much. Such a very brave post.
I did not know I had this time bomb tic-ticking away in me my entire life; the emotional path a person with chronic illness and chronic pain is so complex that even if someone gave me a guidebook to it, I would have stared blankly at it. Some of the emotions, reactions to changes usually–I couldn’t pick up a napkin at dinner tonight, so my mind sped up into wondering aremyhandschangingnow,too? Is it time for them to “go” like my legs?–some of the emotions leave me staring blankly, anyway.
I am virtually holding hands with you. There are no well-intentioned platitudes that can do anything; all I can say is thank you for bringing me that much closer in your world. Words are powerful: I have come to share your anguish, feel your frustration, celebrate your faith and intellect. You amaze me.
(And Jessi: Wow. You’re amazingly brave and bad-ass, yourself.)
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Mark,
Hearing what happened at dinner tonight takes my breath away. That has to be the thing your nightmares are made of- my heart goes out you and all of the emotions, confusion and panic you must be feeling. I wish I could do or say something to make this better for you, Mark.
Thank you for being a friend in writing from the very beginning. One that I admire so much, who makes me want to get my (now) mush-brain writing to a better level since I know you might be reading. And I don’t take that for granted!
Because of you and your friendship, I finally had the courage to share this entry. You’ve helped teach me it isn’t about me, but the voice it gives to others who may not have those words.
I think you are amazing Mark!
What a wonderful image to think of meeting some day 🙂
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Gripping from the very start
Quite a strike to the heart 🍸
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Thank you for visiting and taking the time to leave such a positive comment. I hope you have a blessed day.
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