Being A Mom With A Chronic Illness (ChronicBabe carnival)

Mother and Baby

Image by Praziquantel via Flickr

My goal in life, since I was five years old, was to become a mom.  I thought getting pregnant would be natural and beautiful but it seemed we needed a little help. After two and a half years of painful shots, medication and an every day visit to the infertility clinic  for blood work and ultra-sounds I finally was pregnant. I collapsed to my knees behind the closed-door in my stuffy office and kissed the dirty gray carpet in gratitude. I cried with happiness, one hand already covering my tiny belly.

My son was born and we called him Buddha baby, he never cried, he was always happy, a smiling, compassionate and outgoing kid.  He was my miracle baby, my first born. I went to every baseball game for my son, sitting in the bleachers in the rain, and sneaking away to the car to warm myself up.

My daughter came, naturally, twenty-one months after her brother was born, screaming on top of her lungs as she entered the world. I remember going into her room and lifting this red-faced baby girl to my shoulders, she would take a deep breath and her whole body relaxed into my neck.  I was her only source of comfort when she was a baby. I was there for every ballet lesson and dance recital, holding a bouquet of daisies, her favorite flower, in my arms like I was nestling a newborn baby‘s head.

I did everything for my kids and I loved doing it. This was the career I decided on and I wanted nothing more. I stayed home with them even when they got older because I knew they needed me during the tough middle school years. They would never admit it but they were happy to see me when they got home. Working moms called me “old-fashioned” but I didn’t care.

When I was 50, I went through menopause and my body fell apart. I was diagnosed first with Hashimoto’s Thyroiditis, an auto- immune disease. When Synthroid, did not help me at all, I warily shuffled from one doctor to another, every bone and muscle and joint in my body screaming with agony.  My internist had given up on me, she stormed out of the room while I was laying there on the exam table crying in pain.  After visits to many different doctors I was finally diagnosed with Fibromyalgia. I felt like I had the flu, every single day and night, with no fever, my personal definition of Fibromyalgia.

My life changed after that. I became the mom “before” I was sick and the mom “after.” I felt that I was no longer the mom you could always count on. I prefaced everything by saying “If I feel okay that day,” and “I’ll call you the morning of…”  Luckily my children were fourteen and twelve but it was now Dad who got up, made breakfast and lunches and dinner. Me? I was asleep, always asleep and in pain.

I felt lost and sad for years, not being able, physically, to be the mom I once was. Now, I am dropped off at an entrance to anywhere we go  like the handicapped patient I am. I sit alone, on a chair, when all the other parents and children go on a campus tour to see the entire campus. I cannot walk that far. I don’t want to be an embarrassment to my children or a burden for my husband.  I want the kids to remember the mom I was before I was sick but I know they don’t. They probably just remember me as I am today. I am not the mom I was before my illness even though my heart remains unchanged. I am the mom that they have now and because of that I have tremendous guilt and a lot of residual, emotional pain.

8 thoughts on “Being A Mom With A Chronic Illness (ChronicBabe carnival)

  1. Pingback: in hono(u)r of mother: ChronicBabe blog carnival #28 « Phylor's Blog

  2. Hi Laurie,

    What a really beautiful post. I guess people outside of the chronic pain community might not understand why we find a post about pain and loss beautiful. I think it must be like art. Your description is so easy to relate with and moves me deeply.

    I’m sorry you have had to be in pain and that you got sick. It is sad.

    I’ve always thought that being a Parent is as important, if not more, than being the President of our country.

    I too always wanted to be there for my son. I couldn’t as much as you because his dad died when he was little and I went at it alone, but I found ways to be home by 3 pm and we played ’til 8 when we would then get ready to read. I loved every moment too.

    My son was twelve when my health took a turn and I still feel guilty, particularly because it was depression and it is hard to accept this as a disability. It did disable me though. I finally managed to get better and was able again to do things and then, when he was about 18, is when the physical illnesses hit me hard.

    Sometimes I ask him if he remembers us doing all the things we did together and he says yes. He remembers it all and I’m glad, but sometimes he looks sad when we talk about the way I was.

    I bet your children will remember all those times you were there in their lives; they will remember, esp., when they have their own children. They’ll be there for theirs too I bet!

    I know that while raising my son, I sure remembered who was there for me when I was a child. Mostly, I went at that alone too, but I remember the little things and the times when my mother wasn’t working or when my dad built me a camp fire.

    I bet your children have a place in their hearts shaped exactly like you sitting on the sidelines watching them play or dance.

    Thank you for this heart-felt post.

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  3. Oh Laurie, My heart goes out to you. Such raw expression. I can not begin to imagine how painful it would be to have such a beautiful dream of being the kind of Mom you wished for disintegrate with you.
    with love,
    Judy

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  4. You are obviously a very strong woman and a great mother. Above all your children will see those traits, no matter if it is when you are waiting for them in a chair or running through the park with them in their memories. And even if you were the greatest, healthiest, richest, most whatever parent on Earth, teenagers would still find a way to be embarrassed…that’s their job.

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  5. Oh boy Laurie! I read this post and thought “how did Laurie get in my brain”? “How does she know so much about my life”? All of us chronic Moms feel the same way, that is if we really love our families. My boys were 13 and 15 when I got sick and it was horrible. My Hubby was devastated but I was very lucky that my Sister and Mom were here for all my Guys. I know your kids will remember that “other” Mom, because my kids do. Your kids love both Moms…believe me.
    mo

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  6. Gosh Laurie, I really feel those words. I too am “a mom before, and a mom after”….I can’t do so many things that most parents can. Luckily my kids also were a bit older when tragedy struck….like 11 and 17. But it still matters. The illness still makes me different. Lacking. Awash with guilt every day. And now they are older…23 and 17…grandchildren in the future who I can’t carry around, or get down on the floor to play with…My poor husband married a woman 7 years younger than him…and ended up with an invalid some days. He must do alot of housework/laundry….plus his more than full time factory job…and wait on me on the days I cannot get out of the bed. He has had to nurse his wife….he literally held my intestines in his hands as he had to learn to care for my ostomy when I had it, and my daughter had to watch these lessons as well, just in case. It sucks Laurie Lou. We are women who have not asked for much in life. Just to be healthy moms for our kids. Healthy wives for our husbands. And we don’t get that.

    But…we ARE here. We get to watch them grow. We get to give them advice. We get to hear about their days at school or their activities with friends. Each day after school my daughter comes into my room, sits in the chair at the foot of my bed and tells me about her day…I really look forward to and cherish this time…and am grateful I am here for it. I have to say I can remember before I became this way, I would watch the clock for the time when both kids and husband would all show up at the end of their day…all three wanting to tell me their stories at once, and I would get so frustrated with it, so impatient….now, I can’t wait for them to come in and talk to me…so I guess in a way, it has made me feel more blessed to be here to hear them….to laugh with them.

    I also get dropped at the curb…so embarrassing…lol, like some little old lady…people look at me as if I’m a lazy cow. Whatever. It’s been a long hard winter, and the Spring is a big ole suck-fest so far also…and I think it has really affected my moods, cuz I’ve been really down, but I’m determined to enjoy as much of this craptastic life as I can, for as long as God allows me…

    Tonight before I read your blog, I had been laying here crying…my intestines are on the warpath, my teeth/jaw are killing me, I have a headache, my foot hurts, I’m worried about my daughter who isn’t feeling great, worried about my son, who had multiple home projects going on…and I snapped at my poor husband earlier tonight on the phone and have felt like a big mean biotch ever since….so, I’m glad I pulled out the laptop and saw your post…helped me not feel alone and to vent a bit as well.

    Being sick doesn’t make us bad moms. It doesn’t make us inferior. So what if we don’t see all of a college campus during tours? Chances are the student won’t either…lol. We are ok. We are better than ok, cuz we CARE. Hang in there Laurie. WE can do this. Now, I gotta swallow a handful of pills to try to slow down some of this relentless pain…thanks for writing and helping another mom! xoxo

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  7. You’re still a great mom! You’re dealing with teens, now — not always the easiest age group! They are trying to express their independence while still needing the comfort of knowing you are there for them. And, you are: you can still provide an ear, a shoulder, a hug — whatever it is they need emotionally.
    A good mother is someone who is caring, compassionate, passionate, engaged, involved, dedicated. You are still all of those things, even if you can’t physically participate in their lives the way you once did.
    As your oldest goes off to college, you can still talk (on the phone or through Skype), listen, participate in his life long distance.
    Your daughter will miss her older brother; you will be there for her if she wants to share. Maybe the conversations have to be in your bed, comfy with pillows and heating pad. You’ve spoken and written of sharing TV shows with your daughter. Cuddled up in your bed, the two of you can still be entertained and entertaining.
    Guilt is part of the territory that goes with being chronically ill. Do what you can. Worrying about not being the kind of parent you were (actively engaged/involved through watching sports and dance) proves just how good a mother you are! I suspect that once your kids get past the teenage years, they will remember BOTH mothers. And, they will remember that you are/were always there for them. That alone is the basis of a very special relationship. But you add many layers to that. You’ll always be a great mom because you wouldn’t/couldn’t be any other way.

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