Much of yesterday, I was unable to talk, due to WTF-ish tongue and throat trouble. In the late afternoon, as LG was scurrying around preparing her backpack and her fashion ensemble for the first day of middle school today, I pulled her close to me.
“I’m sorry that I’m so grumpy so often these days. And I’m sorry that you have to do so much on your own, to get ready for school. I know you’re doing more than most 11-year-olds have to do. I keep hoping and praying that very soon I’ll be well again and our lives can get back to normal.”
“It’s OK, Mom,” she said brightly. “I don’t remember when you weren’t sick, so this seems normal to me.”
She was trying to be kind and supportive. It went through me like a knife. This is what I have feared. She was 9 1/2 when the fever started, that turned out to be related to kidney stones, the treatment of which is what I believe caused WTF Disease when she was 10. I know she’s telling the truth. Our most vivid childhood memories are from after that age. Her experience of me is now primarily of someone who sits around, doesn’t say much, does even less, and requires a lot of help from her.
I asked her all sorts of questions about, “Remember the time…?” Mostly she didn’t. She didn’t remember all the time I was in her first and second and third grade classrooms. Or in her Brownie troop. Or teaching her Vacation Bible School classes, Sunday School classes. Or her second year of pre-school when the teachers said she really should be in school every day, but I resisted and established “Girl Friday,” when she stayed with me and we did fun things all day every Friday. She doesn’t remember all the years when she and I tagged along on Jif’s business trips to various cities, and we went out on our own, riding the trolleys and buses, visiting the museums and parks, while he attended his meetings. Her experience of us tagging along on his business trips is more like the most recent trip to Virginia Beach, where the most exciting activity I could offer her was snuggling together on the hotel bed and ordering an on-demand movie. She was her Daddy’s date for the dinner cruise while I stayed in and had room service alone.
I hate WTF. Please continue to pray with me that it leaves soon. One way or another. I want my daughter to know me as me. Not as sick me. (Truth be told, I’m forgetting me, too.)
Susie, I, too, hate WTF and my prayers are lifted for you and yours every day.
LG’s revelation must have hit you hard. When my adult kids treat me as if I am an invalid, it bothers me; but they are in their 30s and LG is less than a third of their age.
I’m certain that, in her way, LG knows you as you: your love, compassion, spirituality, courage, and so much more.
Blessings and much shalom for the coming week.
I’ve got your back in the prayer department. I’m still hoping and praying that you’ll put the post up that says things are turning around. I had such a stupid and silly emotional outburst over the weekend, and I fixed it by watching back to back comedies with my kids last night. We watched Rat Race, then Elf, with no regard to the season. We belly laughed for almost 4 hours straight. All my insecurities seemed so insiginificant then, just as they do now reading about you and your daughter.
No progress since the mysterious Vitamin D deficiency was identified?
Oh Susie, this makes my heart hurt. Dealing with the physical pain is bad enough; I’m sorry that you have to deal with this aspect too.
Still praying for you here too.
On the spot. My memory ain’t so grand when I’m put on the spot. But when it’s just me? I remember. I remember a lot about when I was a kid. I pass along those memories every chance I get to my boy.
One of the short stories I wrote for his 2nd grade class was about this sort of thing. I’ll send myself a reminder note to email it to you.
So maybe, she was just you know “on the spot” when you mentioned it. And sometimes they remember it the way THEY remember it, not how we do.
In fact, these days I remember a hell of a lot more about being a kid than what my mom remembers about me being a kid.
You guys are just phase shifting. Focus’ll come.
Oh Susie… no…. Damn WTF. Damn it all to hell.
I love you Susie, and I remember who you are, and… well… it’s not much, but I’m here if you need to talk or vent or just whatever. I’m here.
I really really really really hate WTF and what it’s taken from you.
Oh, Susie…sweet, sweet Susie. I love you, my friend, and I’m praying for you. I wish I could do more. I’m so very sorry things suck so badly right now.
Love. Hugs. Prayers. XXOO
Love to you, Susie.
WTF is a big beyotch. Prayers continue. Hugs to you too.
Oh honey, I am so sorry this happened. I understand that knifed feeling totally. You are right when you say she was trying to be understanding and supportive. It doesn’t make it feel any better though, does it? I hope that right this moment, as you read this, you can take a deep breath and feel the hug I’m giving you. {{{{{Susie}}}}}
Susie Don’t give up! I’m praying your “cure” is right around the corner!
Oh I’m sorry! That had to hurt. You will be in my prayers and thoughts.
Susie,
Delurking to say hang in there…I know that things will be better soon.
~weetzie
Hi Susie.
I’m delurking because something struck me in your post.
LG loves you for your unfailing emotional support, unconditional love and beautiful presence in her life. She doesn’t need you to take her places & do things for her, although I know you’d dearly love to be that mom for her.
I’ll continue to pray for your health, and I’ll add another one for LG’s memory to improve. Take care.
Anne
Sharkey said mine. Hang on, Susie….. LG sounds like a great kid, and it sounds like she takes after her mama, too.
Maybe on a good day, you two could put together a picture collection/collage/scrapbook of photos and memories of pre-WTF so that there is a photo record of what life was like before? (I know – taxing, draining, not to mention the cutting and pasting, but…. a thought.)
Hope you see the sun today!
This really made me tear up. I’m so sorry you and your family are going through this.
I will continue to send you all the “kicking WTF to the curb” vibes I have, and then some.
Here’s the thing. I don’t remember many specifics about my childhood, or much of what my parents did with us or for us. But, especially when it comes to my mom, I remember her essence. (She’s still living, but I’m talking in the past tense here since I’m singling out childhood memories.) I just recall, all around her, an aura of kindness and goodness and love. That’s sappy, but when I really think about it, that’s what it is. The warm fuzzies, super-strength. And Susie, I know you well enough to know that you exude that same sort of warmth. Even if you’re grumpy sometimes. Even if you can’t always move your tongue to tell her you love her. Your beautiful soul shines through, and that’s what she’ll always remember. In her heart, not in her head.
And I’m still believing. I think someday what LG won’t hardly remember is when you say, “…back when I was sick…”
Maybe LG is one of those in-the-moment kind of people. She sure seems upbeat about the whole thing. I know she loves you. As soon as WTF is gone, and it will be, you guys will be making tons of new memories.
Love you, sis!
Crawling out from under my rock to let you know that I am praying for you and your family. Just remember to let LG know that you love her, that is what she will remember as she grows. Remember that every day is a gift even if the WTF is kicking your butt, you can choose to let it win or chose to just do the best you can! Hugs for you.
Mark 11:23-24
“I tell you the truth, if anyone says to this mountain, `Go, throw yourself into the sea,’ and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Have confidence my dear….
Praying…all the time with the praying for you, susie. Gad, how that must have hurt. Others said it better. When LG looks back, she’ll recall the essence of your energy and love which is always giving, soft, and most of all, PRESENT for her.
Susie, this song sung by Emmylou Harris on the Trio II album has given me a lot of comfort. It seems especially relevant for you and LG today. It pretty well sums up what Kalki said above. I hope tomorrow has some nice surprises in store for you.
When We’re Gone, Long Gone
By: Kieran Kane & James Paul O’Hara
Trouble, we have known trouble
In our struggle just to get by
Many times the burden’s been heavy
Still we carried on side by side
Chorus:
And when we’re gone long gone
The only thing that will have mattered
Is the love that we shared
And the way that we cared
When we’re gone, long gone
And when we’re walking together in glory
Hand in hand through eternity
It’s the love that will be remembered
Not wealth, not poverty
Repeat Chorus
Oh, Susie. How hard it must have been to hear that. I felt something in my chest when I read that. Kind of like a falling/dropping sensation. I worry about the same kinds of things over here with my kids. Can you get out some old photos or things that she made in school and talk about them? I have done this. They do remember some stuff. They start telling me all about it when they see photos, crafts, etc. Also, they have good laughs when they remember something funny and one funny story leads to another. Like the time J got a Lego bucket stuck on her head. And when S was a chubby toddler and got her leg stuck between two bars on the back of a dining chair and I had to grease her thigh with lotion to get her out.
Also, I like what Kalki said about remembering her mom’s essence. If anybody has good essence honey, YOU DO. She will remember.
{{{{{{{{Susie}}}}}}}}
*prayers*
*more prayers*
Just think of it as WTF is giving you a rest before LG’s teenage years.
My oldest is 11 also and she too claims not to remember all of the stuff we did from when she was small (up til about 8), but I know that there are plenty of memories in there. It usually takes something to jog her memory; a picture, souvenier or the beginning of the story from me. We remember the details, they remember the love and caring that went into it all. LG has that X1000.
I hope she has a great first day of middle school. My oldest started too and so far it’s going very well. : )
(((hugs))) and prayers Susie.
ssnick, thank you; I think you do understand. And I remain grateful for your continued prayers and blessings.
atm, laughter is the best medicine. I see a gastro doc today, who did some biopsies looking for causes of D deficiency. One more bizarre tidbit: they all tell me that it is not possible to malabsorb only one vitamin, and that makes sense, it would seem. Except all the bloodwork shows that that is what’s happening, in my case. I’m SO freakin’ special.
shawkey, thank you. The effects on my family are as distressing, or moreso, than the physical stuff.
mrB, thank you for the encouragement. And I see that I have an email. I’ll be in touch
ck, did you just say to me, “I remember who you are, and, well, it’s not much”? You did, didn’t you? DAMN, you’re cold.
ladybug, there isn’t more than praying. And that’s going to be enough. Thank you.
mrtl, backatcha. xxx
ern, same backatchoo, too. And thank you.
traci, I tried very hard to feel your hug, and I could. I’m struggling with body-connectedness now; I know you know what I mean.
barb, thank you; I’m not giving up. In moments, but overall, no, not gonna happen. Looking forward to rounding that corner.
M&Co., it did, but I’m getting some perspective on it. Just jarring in the moment. Thank you
weetzie, thank you. So nice to see you again
anne, thank you; you’re very kind.
cheryl, thanks; I know there are ways to help “shape” her story — the one she tells herself about us, life, etc.
soozieq, me, too. Thank you, honey.
kalki, thank you for that. I will be more mindful of my “aura,” less concerned about my “performance.” Good advice.
squirl, from your mouth to God’s ears. I do so hope to make new memories, good ones, for a long, long time.
HRHdotp, thanks for the encouragement. In the overall score, I win, but some days, WTF does.
charlie, thank you for the encouragement.
htgt, thank you, honey. Present is good.
katy, that’s lovely. Thank you.
lynn, thank you. And do know now that with a little prompting I can help her fill in more.
milkmaid, thank you. Just keep ‘em coming.
william, I think I’m pretty well rested by now.
trophywife, thank you; I know you’re right. “We” had a really good first day of middle school, even with a forgotten lunch. I hope yours went well, too
Awww… hey! NO FAIR! You can’t just go taking things outta context like that… I don’t care how sick you are.
heeeheee, yes I can! It’s my blog and I CAN!
(You know I love you very much.)
When I read what LG said, I groaned out loud. I’m so sorry she said that, even though she was trying to make you feel good. Although I know you’d prefer she didn’t have to take on extra responsibilities because of WTF, she’s developing qualities that will benefit her in the long run. Again, I know you’d rather she didn’t have to learn them under these circumstances. God and I are “like this” *crossing fingers* so I’ll put in a good word for you.
Did you get my email the other day?
i hate WTF! i know LG’s words hurt but she will remember before you were sick…….later, as she gets older, she will remember. After all, she had you for over 9 years before WTF came along. I think when we are young, we sometimes remember the newest memories – which means, really, that her life is good right now because you are her mom!
You know, I’m sure you’ve been tested and been ruled out for this but…..sometimes your symptoms sound A LOT like what I go thru with fibromyalgia. Drs unfortunately still like to ignore fibro cause of all it’s silly antics that change from day to day, month to month and year to year. But I’ve lived with it every day for about 8 years now. My own dr. tells me how weird I am and how weird my “symptoms” are. I’ve had (since being diagnosed with fibro) my right adrenal gland go completely wacko – which brought about a whole lotta wacko things to my body and a cancer scare; nodules growing on my thyroid – again, cancer scare; and my very most favorite: lymphoma (not) – which brought about gi-normous lymph nodes and an extremely annoying surgery (also painful) just to be told umm, no not lymphoma…yet. maybe someday. all this is in addition to the normal, usual, everyday fun & games of fibro. them drs. they LOVE the cancers, the other stuff? too puzzling. I’m going to have a toxic screen done by a non-medical company just to see what toxins are in my body. THEN i will go see my dr. again.
Don’t know if any of this helps or hurts…just wanted to share. Cause I think about you lots and you are, as always, in my prayers.
Oh Susie that’s awful. Like everyone else round here, I’m praying WTF clears off soon so that you can make up some lost time and create happier, WTF-free memories with LG. xx
So I read this and cried, decided to come back and comment later. Then read it again and the same thing happened.
I’m here to comment now first before reading it again. I cried for you, me and all other mothers who care, who worry they aren’t enough, and due to circumstances beyond their control aren’t like other mothers.
When Shawna was 11 she not only had to get herself up and ready for school, but 8 year old Ben and 6 year old Michael too. I worried, not that she couldn’t do it, but that I was making her their other parent. Because I had to be to work before they left the house. They did homework after school and I would get home around 6:00pm and cook dinner. Well most of the time, at least twice a week I would tell the kids I would get dinner after I rested on the couch first. To only be woken by Shawna at 8:30pm telling me they were going to bed. Oh no what about dinner? It is alright mom, we ate cereal. I hated it, but we survived it. Recounting this story makes me feel tired and causes tears to run down my face. I wanted to be a better mom than that. Not sure I can finish this.
All I can say is my now 25 year-old, soon to mom, daughter tells me the other day. I hope I can be as great a mom as you.
cb, thank you for that perspective. “Like this” with God is a very good place to be. The best. Thank you for your prayers.
robin, that’s one of the possibilities that have been raised. I didn’t have pain until the last few months, so I didn’t think that was it. Now I do have pain . . . I dunno. I wish you successful diagnosis, and healing.
platy, thank you, my friend. I feel very hopeful. I think something will happen soon.
nina, oh, honey. I’m sorry this made you cry. I know from your stories that you were and are a wonderful mom. Thank you for telling me this, even though the memories were painful. Your story does give me hope that LG is taking in much more than the things and stuff that I can’t do. And as always, my hat is off to single moms who do what you did. I agree with Shawna Marie, that you’re amazing.
:’-(
i just punched WTF in the balls. hard.
Your beautiful daughter has exactly the loving mother she needs, and the love you share is fortifying her to be the wonderful person she’s created to be. WTF can’t change that. I have a friend whose mother died when we were 9 years old, and to this day, her mother remains the most influential person in her life because of the love she gave for the few years they had together. WTF can’t take your love for LG, nor hers for you, no matter what it does. My heart hurts for the pain WTF causes, but I know it doesn’t stand a chance ultimately against you or LG.
Oh it has been such a long time since I have been around. I am sorry I have been so absent. I am sorry too that WTF has not up and left while I was away. Your courageousness through all of this is admirable and your love for your family so strong. My prayers are back on track and including you in every one.