Multiple sclerosis, Struggles

Absence noted

How do you prove a negative?

In our case, with pregnancy tests.

Not long before MS sent shockwaves big and small through our simple life, Nick and I had The Talk about The Future and decided to try to have a baby. It wasn’t a high-pressure situation, because we felt no real sense of urgency. If it happened, wonderful. If not, we’re OK with that, too. We had time.

We’ve been married 9 years, and in that time, have grown from us-centric, career-driven selfish beings to embracing our animal babies to being cautiously, optimistically ready for that next stage.

Well, everyone knows what happens with the best-laid plans, even if ours were of a more flexible nature.

Enter multiple sclerosis, with its capricious and cruel ways, hell-bent on dictating my future.

And now I feel an acute sense of loss for what isn’t even there.

It doesn’t help that nearly every woman I know has a baby, just had a baby, or is about to have a baby. There’s a pang of sadness when I think that I might not ever get to experience that fullness, that love, that joy.

It’s possible to have a baby with MS, but not so long as I’m on this treatment. And I want to give myself a fighting chance with this disease, which means staying on Betaseron as long as possible. But if and when we do decide to try for a baby, there’s a whole new slew of challenges, because MS usually lies dormant during pregnancy but tends to come back with a ferocity soon thereafter.

I know I should pack up this pity party, because I’m hardly the first person to go through this. And there is suffering all around, so my plight really pales in the bigger picture. I can at least keep my sense of perspective, if nothing else.

I think what gets to me most is not being in control, that now there is a prescribed list of cans and cannots.

And now I’m confronted with a loss of autonomy, the possible loss of mobility, and the loss of a future that I didn’t even know I wanted until I realized I might not get it.

This absence fills me.

13 thoughts on “Absence noted”

  1. You know, I went through the same thing. We managed when my Lupus was in remission to have Ian. I was warned of the dangers of the massive rebound afterwards, but it didn’t happen. The pregnancy was full of extra tests and challenges, but we all made it through. There is still PLENTY of time to think about having a baby. We are not so old as that! You have to get yourself healthy first so that you can be the kind of mother you want to be.

  2. Jenn, I have been reading through this wonderful blog, and besides the obvious “oh man, I can’t believe she has to go through this,” I keep thinking to myself, “What a wonderful writer she is!” Your storytelling is simple and beautiful.

  3. Thanks, Corrie. Your words have given me much-needed encouragement. I miss you and would love to meet your boys someday!

  4. You are going to make a wonderful mom someday and I firmly believe you and Nick are going to get that chance. hugs

  5. Most of my life, I didn’t think I could have children because of the heart defect I was born with. In my early 20s, the feeling of loss hit me. But I eventually decided to embrace my future as aunt and not mother. Now, all these years later, we’re being blessed with a child. So know that it can happen for you, too, sometimes when you least expect it. You and Nick will be great parents when the time comes.

    1. I’m so happy for you and Walt! My mind knows that Nick and I have time for this to happen for us eventually, but my heart still tugs so. In the meantime I’ll just have to snuggle with all the newbies born or about to be born!

  6. I know in my heart that you guys will be great parents someday. Don’t give up on yourself because amazing, wonderful things can and do happen!

  7. I write what I wish someone had written for me 30 years ago when I was faced with the same decision. Bottom line, there is no cookie-cutter answer. What you decide should be a function of the support system you have, your life goals, and your ability to adjust to the challenges that MS may pose. In other words, MS does not have the deciding vote. You do. I did not have the necessary support system 30 years ago and therefore opted not to have children, but I knew plenty of MS contemporaries who went ahead and had children. Not one of those expresses regret. It’s a different life, to be sure, than you had perhaps envisioned pre-MS but, as you already recognize, life is full of uncertainty anyway.

  8. Your plight makes up the bigger picture, so don’t feel bad for sharing it. I’m so sorry this happened to you, but I really appreciate your candor in sharing how MS is affecting your life at a time when it seems to be everywhere I look. A classmate/friend was diagnosed a couple weeks ago, so the comparative perspective you have is illuminating.

  9. My friend Melanie gave up on that dream when she was diagnosed. Then, on Christmas Eve, after Mel complained of feeling grumpy, ill and tired, her husband leaned over during the church service and whispered, “Do you think you might be pregnant?”

    “I’m never pregnant,” she snapped back at him.

    A few hours later, she held a positive test in one hand and the phone in the other.

    And now she’s pregnant again.

    I know it took some juggling, planning and time, but it did happen. And when I saw her three weeks ago, she was glowing.

    Focus on your treatment, yes, but don’t let that dream go yet.

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