I was diagnosed at 24 after a very severe, vaccine-triggered episode that left me hospitalized for a month.
I love kids. I worked in the education sector directly with children for 5 years. I'm that weird lady that yelps at the sight of a baby or toddler. I love chatting with older kids. I love my nieces to bits.
But the idea of someday having my own kids scares me like nothing else.
How can I care for someone full-time if taking care of myself takes so much time and effort?
How can I be stable enough mentally and emotionally for someone so vulnerable, while living with the unpredictability of MS?
What if I pass on the disease?
Will I be missing out on what's supposed to be our natural "purpose" in life? Or can I be a very active part in my nieces' lives and have that experience to some extent?
That's a lot of rambling questions. Sorry ladies. But it's been on my mind and my loved ones don't really "get it", you know?
I'm not looking for a specific answer. I think I could be happy without kids, too. I'm. Just wondering what other people think or have experienced.
Hi there, thank you for sharing your questions/concerns! Because I am in the same boat right now and have been trying to get some feedback from other people in my/our situation. I was diagnosed this past Sept in the midst of wedding planning. My husband and I had our plan all figured out, we would get married in March and immediately start trying to concieve. I am 31 and he is 40, so we really didn't want to wait much longer. Then I had my flare up in June 2018, got all the tests and we got confirmation that it really was MS in Sept 2018. So that sort of threw a wrench in the plans. I am JC positive and therefore injectables are my only option. We spoke with my neurologist explained about wanting to try for children and he was encouraging but cautious, in that he did not want me to wait any longer than 1 maybe 2 years MAX before I got on medication. He really stressed the importance of the medication. I a lucky in that I was diagnosed after my first flare up and at the time of all my imaging only had 1 lesion (not in the best location though, it is on my brainstem). Which I do understand this is so unpredictable, and you really aren't sure what the future holds, which in my opinion is becoming the more scarier thing since being diagnosed.
We did try and I did get pregnant, but unfortantely I miscarried but my body didn't really do anything about it. It was at my first prenatal appt that they told me it was most likely a miscarrage because the fetus wasn't the size it should have been and there was no heartbeat. So now after that, and on top of everything else. My OB was very encouraging that I would have a succesful pregnancy in the future and was encouraging to keep trying, saying that it had absolutely nothing to do with my MS.
However, I am having the same concerns and questions you are. Is it really worth it, with this all being so unpredictable? Back in Sept I would have told you 100% without a doubt it was worht it. Like you, I have always wanted kids, always saw myself as being a mother one day. I also worked for a long time with kids, both in my nursing carrer and during college when I worked at a daycare. However, now I am questioning that more and more. Not sure if it the emotions coming off the miscarriage, or just thinking about life and my future more. I don't want to have my child have to see my get worse and possible end up having to take care of me. Or be a burden to the child and to my husband for that matter. But he at least he got a say in that. We had a long discussion about our future after my diagnosis. He told me flat out, he wasn't going anywhere. But a child doesn't really get a say. I guess you could say that about anything not just specifically with MS.
Sorry if I am coming across as rambling. Just this has really been on my mind the past few weeks. I am not sure there is a right or wrong answer/decision to make. It is a personal one. But it is nice to see that other people are also in the same situation and having the same concerns. I feel like my friends don't really understand becuase most either already have kids or don't want them because of carrer goals. Neither of which is the same situation as not having them due to health reasons.
Anna, I'm so sorry. That's such an upheaval.
I get what you mean about a kid not getting a say. What does your husband say? Because to some extent he would need to be ready to pick up the slack when/if you're unwell. Is he ready to do that? Has he talked to guy friends who already have kids? I think if I was in your shoes I would want to make sure.
At the same time, kids NEVER get a say re: who their parents are. And I think if you make a decision, it should be about your wellbeing and the family you want, rather than the guilt you might feel. We live with SO much guilt already because of MS. Just because you know in advance what one of your shortcomings is going to be as a parent doesn't mean you shouldn't go ahead with it if it's what you want. (The fact that you're even thinking about it this way is already so thoughtful). Because I bet most ppl don't think about what their shortcomings will be because they're not forced to like us.
Unlike you, I actually feel like I don't desire children anymore. But if something comes through in your ramblings (jk jk) it's that considering the option of not having children is tough on you.