When your chronic illness prevents you from being a Mommy

My husband and I have always wanted to have kids. Always. I have wanted to have kids since I was little. That was the whole plan, grow up, go to school, get a job, get married, have a kid. Specifically in that order too. Except nowhere in that plan does it have get diagnosed with rheumatoid arthritis at 15 and get diagnosed with lupus at 23.

I can’t tell you how many times my husband and I have made a plan so that once we get through this year next year will be our year that we try to have a baby. I can’t tell you how many times because that’s just it it’s happened so many times that our plans fell through that I can’t even count anymore. My husband and I have been together since 2005 we’ve been legally married since 2011 but we were engaged for 6 years in between there, and we’ve lived together for 10 of them. If it has anything to do with a child, believe me we’ve talked about it. We’ve made lists on pros and cons between adoption and fostering. We’ve made budgets to follow when the time came. We have sold and bought different cars now twice because of this up and down scenario of having a child, and then something happening to me, and there you go that plan to have a baby goes right out the window. Why? Because I get too sick to even contemplate the possibility.

I know that people just mean well when I try to talk about the situation, they try to console me, or make me feel better, but when I hear “it’s ok there’s so many kids that need to be adopted” I kind of want to scream. What they don’t get, is that is not even the point. We have discussed having our own child together. We have discussed surrogacy. We have discussed adopting a newborn. We have discussed adopting an older child in need. We have even talked about fostering children. The thing is I would do all of those, but what people don’t know is that I have to pass a medical exam to be a foster parent, and have to be a licensed foster parent to actually foster a child . To adopt a child, myself, my husband and our home have to be okayed buy some agency. An agency who literally wants every piece of information on you. Surrogacy is ridiculously expensive and I don’t know if you’ve looked to see how much it is to adopt a newborn lately, but it’s not very economical either.

So, if I don’t hear the typical “but there are so many kids who need to be adopted and need a good home” I hear “why would you put yourself through more pain just to have a child.” “Why would you want to have a child if it’s going to make your life harder.” “Why would you want to have a child when you would have such a hard time taking care of it.” “Why would you want to have a child when you know that your disease can be passed on to the children.” Or the hurtful comments like, “I think it’s the most irresponsible thing to do”. For all of those questions they are all usually asked by women who are mothers. So, for all those questions I have one statement…

You already have your child so you have absolutely no idea how I feel.

Nor do you have a chronic illness, and understand the good and bad things about it, so you have absolutely no idea what I’m dealing with. How can you make assumptions? But more so a question I have for them is, why do you think it’s your place to question or judge me in any way over wanting to be a mother when you already are?

Moving away from that little bit of hostility I have, let’s speak about why I want to try to have my own child. Growing up I always knew I wanted to have kids. When I was a junior in high school one of my best friend’s got pregnant and although at the time I thought she was crazy because her and her boyfriend did it on purpose, I think that’s where it started. As a junior in high school I already knew someone my age who was going to have a baby. In school girls always get with their friends they talk about boys, and what they’re going to do over the weekend. Sometimes in that mix of everything you hear the statements…

I can’t wait to have kids

I can’t wait to get married

I can’t wait till I can get out my parents house

and sometimes you even hear

you’re crazy I don’t ever want to have kids.

To this day I know for a fact every girl I ever knew who said that they never wanted kids, have at least 2. The reason I remember I can tell you that, is because at the time I thought they we’re the ones that were crazy. For someone like me who has wanted kids all along there is a bit of jealousy there. I’m sure any woman in the world can understand that. I know it’s a little wrong to say but every time one of my friends ends up getting pregnant there is that little bit of me that has to make myself be happy for them. Most of the time though I love them anyway so I’m extremely happy for them, because I know how excited I would be and that I would want people to be happy for me too.

However I still haven’t told you why I want a child so bad. Well, I would love to see myself or my husband in that child. I want to see what color their hair is and what color their eyes are. I want to see who they take after. I want that excitement of finding out I’m pregnant. I want the ultrasounds to hear the heartbeat and find out the sex of the baby. I want that love between a mother and a child. I want my husband to experience fatherhood. I want to watch him play with our kids. I want to watch him Coach baseball games and soccer teams. Although he might go for coaching a hockey team first. I want to teach them their numbers and letters. I want to teach them how to tie their shoes. I want to be able to watch them grow up. I want to show them how to be a good person. I want to go to parent-teacher conferences. Then I want to go school clothes shopping, and shop for school supplies. I want to take care of them when they’re sick, or hug them when they’re scared or hurt. I want to be able to paint a nursery and pick out a crib. I want to pick out a name that means something to the both of us. I want all of that and so much more.

With the good I’ll also take the “bad”. I’ll take being thrown up and shat on. I’ll take that first year when you absolutely get zero sleep. I’ll take the screaming nights when they’re teething or when there’s monsters under their bed. I’ll take the terrible twos, and the bratty teenager. I’ll take screaming and yelling to do their homework. I’ll take the times that they’re so sick that it breaks my heart. Or talking them through their first heartbreak. I’ll take staying up late and helping them with homework or with a project. I’ll take the aggravating parking lot at the school’s when you go to pick your kid up. I’ll trade in my little race car for an SUV or minivan. I’ll take whatever else there is that could possibly be construed as “negative” when it comes to parenting. I don’t know what else I could possibly say that would make anyone understand that extreme yearning I have to be a mother.

I think another thing people don’t know or don’t understand about my situation is that I’m going to be 34 at the end of the year. I do have to go off medication to even try to become pregnant. As a woman with rheumatoid arthritis I have serious risks. For one, miscarriage is at the top of the list. Then you have pretty much a certainty that I’ll have a premature baby. There is an overwhelming amount of evidence that with the medication I’m on and my disease that it is very possible that I can hemorrhage after birth. I will obviously be in more pain because of the weight gain and will not be able to take pain medication or my anti-inflammatories. The stress on my body will probably cause flares of my diseases. I’m more likely to be put on bed rest and to be hospitalized for longer periods of time. After the delivery my body will go into a severe flare where I probably will not be able to hold my child for at least the first two weeks, that’s at least what the doctor told me because I’m a severe case, but anyone that knows me knows that I wouldn’t let that happen. As far as taking care of the child goes though I know it’s going to be harder on me because of my situation. I know it’s going to be harder on me because of the limited dexterity in my hands. Believe me I have had a lot of time to think about anything and everything.

I think people that are a little against my decision for one reason or another, for some that think I’m the one that’s being selfish because I’m only thinking about what I want.... I think that they need to read this, and if they still don’t agree with it or are at least willing to be supportive then they need to read it again. I feel like this is the least selfish thing that I could ever do. I’m willing to put myself, my body, my life at risk for the hope that I can deliver a baby to term. If people can’t understand that or don’t comprehend what this means to me, I don’t know what to tell them other than their opinion doesn’t matter anymore. Believe me when I say I used to take everyone’s opinion into consideration because I didn’t know what the right thing to do was. It’s been long enough now that I know what the right thing to do is. The right thing for me is, to do what I have to, however extreme it may be to fulfill a dream.

I think going to see a high-risk Maternal Fetal doctor at the beginning of the year has really helped me emotionally and mentally get my head right. I needed to hear the risks, I needed to hear the negatives, I needed someone to look me straight in the eye and tell me, sure you can do this, but this is what you have to deal with if you want it that bad. Before I went to the high risk doctor, I was never worried about myself, I was always worried about the child. I was worried about how the child would be taken care of. I was worried if they would get as much care and love as any other child with healthy parents. I was worried about the child developing correctly because I looked at my body as being completely toxic for a growing embryo.

I found out that wasn’t the case. The big worry was not if the child was going to be healthy or not because that wasn’t a risk. It wasn’t that my body was awful and so sickly that I would not be able to have a healthy child. I found out very quickly the big worry was how getting pregnant and having a child was going to affect me in a negative way. I completely loved the doctor I saw. She told me about one of her patients who was like me with rheumatoid but was in her forties and the dexterity of her hands was worse than mine. It wasn’t until this woman was in her forties that she was healthy enough to carry a child. The doctor said she wasn’t going to lie that the woman was in an extreme amount of pain throughout the whole pregnancy. However when she came in for checkups and ultrasounds she always had a smile on her face because she was just so excited that she was finally pregnant. That patient went on to have three more healthy pregnancies. That example alone, gave me more hope and reassurance that I ever thought I could half.

I realized I have put my body through more hell than I know anyone should because I refuse to stop. I refuse to stop living my life on my terms. I don’t know the woman personally but I have never met anyone that has such severe deformity in their hands as I do because of rheumatoid. Just knowing that makes me feel like this woman and I are in some way kindred spirits. If she can do it, why can’t I. I’ve been able accomplish more than doctors had originally told me I could do. Why wouldn’t pregnancy just be added to that list.

I guess I can answer my own question now. What do you do when your chronic illness prevents you from being a mommy? In my case my answer is another question. How bad do you want to be a mommy? I think if you fight for something hard enough you can achieve whatever you want. So I guess for rheumatoid arthritis warriors and lupie’s out there who still have that dream of becoming pregnant or being a mother, you might have to dig deeper then you ever even contemplated. But God doesn’t give you the best things for free, sometimes you have to work for them a little bit harder. Or in this case a whole hell of a lot harder.

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