My eight-year old son shattered my heart into a million pieces tonight as I realized Lupus was stealing his innocence.
Stealing is the only word I could come up with-because it’s just like a thief. Taking my organs and my health and my figure and my mind. And now it’s moving on to the people I love most…the ones I fight so hard to protect from this burglar.
I was laying in bed next to him, giving him comfort in order to get him to sleep and getting him ready for the next few days ahead. It’s treatment week at our house, which means Mom is hooked up to an IV for 5-7 hours a day, and very tired and worn when she returns. It means their normal routine gets bounced around, with uncertainty over just who might show up to pick them up and just what might be in store when they finally get home.
I had planned their days carefully, from their lunches to their playdates after, to all the things I could control in order to ease the chaos and worry that comes with treatment week. I try hard to eliminate as much of that uncertainly as I can, knowing they thrive on normalcy and knowing what is next. But in doing this, it seems I failed at giving them the bigger picture.
He was nearly asleep, and I lay there stroking his hair as I tend to do, and rubbing his back, as I tend to do, and whispering the many things I say to try and fortify him and surround him with reassurance and love…
…honey I wish I could take away all your worry.
Mom, I wish I could take away your Lupus.
And I started to choke up, but forced my hand to not miss a beat rubbing his back.
I’m getting so much better though sweetie. My treatments are working.
But all you do is go to treatment. All you do is go to the doctor. Every day you go to the doctors. Only people who are dying go to the doctor every day.
And with the weight of a million tears I felt crushed and paralyzed. Flattened and pinned deep into the bed.
He is so very smart, my son. He is right. I am at the doctor very nearly every day. And we are there to make sure I do not die. But he is wrong to be so afraid right now. I AM getting better, it’s just very hard for an eight-year old to see or understand, when all he sees is Mom headed, yet again, to the hospital or medical center.
I have never worked so hard to keep the tears inside. They were flowing down the sides of my cheeks but without my body daring to flinch. He could not, he would not see me cry. This would only scare him more.
I did what mothers and fathers around the world do and I gave him every reason on earth to believe all was well. I did everything I could to make him understand he was safe, I was safe, our family was safe and together.
And then I walked down the stairs. I walked into the living room. I sat between my husband’s legs as he sat on the recliner playing a game. And I wept as hard and as violently as I could muster as he held me.
I had failed him tremendously. I had failed this sensitve, filled with dread, filled with worry child that saw me taking him to school and saying things like ‘Ok honey, you have your wand for Harry Potter class after school? Good because I have the doctor and I will be there right after to pick you up.’ And…’Ok guys today I just have some tests at the doctor and then after I pick you up it’s Slurpee Day!’ And then ‘No, no both you…we can’t have lemon chicken tonight because I’m just too tired to cook, I had treatment all day so we’ll just order a pizza, ok?’
And while my husband and I would throw in things like ‘Mom is doing good she just needs to keep doing good, so she sees the doctor today and tomorrow and the next day.’ Almost an after thought.
All the planning in the world…all the work to protect the kids as much as possible…and this whole time my son thinks his mother, with every doctor’s visit, is closer to death.
I expect this or a similar scenario will play out many times in our home. This battle wears on and on and on, with more victories lately, but it’s length is taking it’s toll. And because as my six-year old daughter will tell you…Mommy has Lupus, and it will never go away.
oh, man. This brought tears to my eyes.
Erin, you are so strong and such a great mother! Your kids are lucky to have you.
Reading this really hurts, I have a 3 year old and a chronic illness. I have been struggling with how to explain that momma can’t on days that she NEEDS to go to the park or NEEDS me to do something for her.
I don’t want to scare her, I will be around for a long, long time, but there are just some days that momma can’t. And that is so hard for any kid to understand.
I am crying at my desk, trying to get myself together before the others arrive. I am so sorry that Lupus is doing this to your family. I wish I had some nugget of wisdom to impart. I gots nothin’. Other than you are such a source of strength to me that it’s sometimes hard to see past it into how you really are doing/coping, especially how the kids are faring. And I’m sorry.
*hugs*
It’s so hard when we know that we’re supposed to take care of our kids, worry about our kids, but then we see them worrying and trying to take care of us. You try to shield them from harsh reality, but it’s impossible to protect them from something so pervasive.
My 6 year old knows that Mommy gets sad sometimes, and she’s tired most of the time. How else do you explain Depression and Chronic Fatigue Syndrome to a child? I know I try not to let him see me cry, but he follows me up into my room sometimes, and he crawls into bed with me and gives me a kiss on the cheek to make me feel better. “Does that help you not be sad anymore, Mommy?”
Lupus is so much more intrusive than what I’m going through, and it is better to be honest with your kids about it than to try to hide things and instead let their imaginations get the better of them. Are there any books or websites that can help explain lupus to your son so he won’t be so scared that you’re dying? We were given a great book about cancer when my dad was going through his treatment, and TJ got a lot out of it.
This is so beautifully written, and so bare. It brought me to tears too. I live with a chronic illness, and while it in no way compares to the struggles that you go through, I know some of what you speak. It’s so hard to do all that you need to do for your children, and do what you need to do for your health, and make them understand that some days, you just can’t. I struggle with this in my own little way. Thanks for this beautiful post, and here’s to better days ahead for you.
I have so been there, in an albeit different way. When my son was four I had a surgery that caused severe nerve damage. I was so ill and in so much pain that I was in bed, on heavy meds, with a nurse taking care of me, for six months. I couldn’t even get upstairs to put my son to bed or do much of anything with him. Eventually I had a surgery that fixed the problem. The guilt, the pain of that time, though, was just awful.
I saw how it affected my little monkey so deeply. Even now, so many years later, he just doesn’t want to talk about it. It’s very very very very hard to be a mom going through any serious illness (and I can only imagine how hard it must be if that illness is life-threatening). You deal not only with your own physical pain and frailty but the mental pain of feeling as though you have failed to protect your child and have somehow marked them forever. I get it.
My heart goes out to you, Erin. I can’t imagine how you feel right now but I do understand the want & desire to protect your children from this kind of pain & sorrow at such a young age.
I do not think you have failed him. We all work so, so hard to protect our kids from things and things still happen. They pick up on things we try to hide, or they see stuff in other places that have impacts we have tried to avoid.
When he is older he will talk about how you worked to be there for him and do stuff with him even when it was hard. And he will appreciate you all the more for having gone through it.
It just sucks right now, but he knows you love him.
You have not failed him. We all do the best we can do with the cards we were dealt. Is it fair — hell no. But it is what it is.
This was heartbreaking, but so well written…I wanted to stop reading, to run away from your pain, but I couldn’t take my eyes from the screen.
Your words hit home. I just received yet another dose of bad news from the doc, and it is so hard sometimes to paste on a smile when you are quivering inside. Kids are so perceptive, and I often wonder how much my nearly 8-year-old knows.
Our kids are tougher than we think. Hang in there.
I want you to know that I send you virtual hugs all the damn time. Every time I read your posts in my reader, every time I see a tweet, every time someone mentions your name in this great internet of ours. Hugs, hugs, more hugs. Every single time.
Beautiful. Just beautiful.
In NO way have you failed. At all. They may be different kids because of LupusSUCKIT, but they are not worse off. Just, different.
Been there… oh man. Yeah. I remember the first time my daughter told me she wished my pain could go away. I cried all night too. It is a burden on them, but information helps. And normalcy helps. You’re doing all you can. *hugs*
remember, you are doing the best you can, and know that that will always be enough.
Kids are resilient, remember that…when you are better (as you are getting) they will get better, too.
Oh, Erin, I’m so sorry. When I was dealing with melanoma, I was so unsure how much to tell the boys, how open to be. I don’t know how I would be handling it if I were in treatment. You are amazing and your kids will be fine…you and Aaron are handling this all so amazingly.xoxox
I am here by accident, and so glad I am. What a heartbreakingly honest
and beautiful portrait of a strong, loving, honest and open family. You are a wonderful mother.
I may be on the otherside of the world but this hits close to home. As a mum with a chronic illness I’ve frequently felt that I failed my kids, not that I say it much. Most people wont hear it. They tell you ‘don’t be silly”, “you’re doing all you can”, “you’re kids know you love them”. But none of that makes up for what you feel inside in moments like these. My youngest has struggled most with my illness. Like your son he thought I was dying. When he told me it broke my heart, even now the wound is still raw. Recently I was in hospital and my dad brought my boys in to see me. My eldest, the stoic 17 yr old, was reasonably okay, but again my youngest broke. I ended up sending my dad and eldest home, whilst my youngest curled up on the bed next to me and I did the mum rub, stroking his hair, holding him tight, telling him I was getting better. Sitting is a room of IVs, rushed nurses, beeping machines, knowing that everything around me said I was lying. All the time feeling the guilt like a sword in my heart. I don’t know if there is an answer for the guilt. It’s bred into you as a mum, sick or not. All you can do is take the steps, hold them tight, swallow the tears in their presence, and love them. Know that you are doing your best, and I’ll go tell myself the same. Maybe one of us will believe it.
Ooof and *sniff*…and *HUGS* and *healing vibes*
SuckLupus indeed. I’m sorry that you have to go through this. All of this the treatment, the guilt, the sadness all of the things that just aren’t fair in life. But you will get through this and your kids will see that, they will see your strength and your bravery and they will be strong and brave too.
I may be on the otherside of the world but this hits close to home. As a mum with a chronic illness I’ve frequently felt that I failed my kids, not that I say it much. Most people wont hear it. They tell you ‘don’t be silly”, “you’re doing all you can”, “you’re kids know you love them”. But none of that makes up for what you feel inside in moments like these. My youngest has struggled most with my illness. Like your son he thought I was dying. When he told me it broke my heart, even now the wound is still raw. Recently I was in hospital and my dad brought my boys in to see me. My eldest, the stoic 17 yr old, was reasonably okay, but again my youngest broke. I ended up sending my dad and eldest home, whilst my youngest curled up on the bed next to me and I did the mum rub, stroking his hair, holding him tight, telling him I was getting better. Sitting is a room of IVs, rushed nurses, beeping machines, knowing that everything around me said I was lying. All the time feeling the guilt like a sword in my heart. I don’t know if there is an answer for the guilt. It’s bred into you as a mum, sick or not. All you can do is take the steps, hold them tight, swallow the tears in their presence, and love them. Know that you are doing your best, and I’ll go tell myself the same. Maybe one of us will believe it.
+1
I’m just catching up and am so saddened that you have to deal with all this. Not only your own pain but feeling like you are not a good mother. You are still a great mother.
Hugs from NY,
Dagmar