Since Duhdee brought up the topic on Facebook…
A little over 2 years ago Duhdee and I made The Decision. We weren’t terribly happy with the outcome, we still wanted more kids, but it was a decision and there was some relief in having made it. We were ready to move on and see where else we might end up now that we’d decided that road was not for us.
So, I’m a little annoyed, quite frankly, to be standing at that crossroads again. I thought we had moved on and, despite some twinges of regret, I like black and white. I like decisions. I don’t like possibilities. I don’t like uncertainty. I especially don’t like uncertainty when no amount of Google searching will help me make up my mind!
The facts, such as they are: I’m having night sweats, I know the biological clock is running down for me way too early. I really, really want another baby but wanting another baby doesn’t seem like a good enough reason for having another baby. Another baby means splitting resources, resources that we don’t have an endless supply of but, really, who does? Every reason I come up with for having another either makes me think that Monkey isn’t good enough or that the new baby would be for him. And it that’s NOT it. He is enough. I would be lucky to have him and only him. My heart will not break if there is never another child.
The other issue is trickier. Is it wrong to have another so he has a sibling to learn from and to play with? Is it wrong to have another so he won’t be alone when we’re gone? It feels wrong, it feels calculated. It feels like that other child would be a means to an end. After having met some amazing FX siblings in Detroit we really want that for Monkey. We want someone who looks up to him and looks after him, someone he can look after since he’s such an amazing caretaker of all the little kids at school.
Is deciding to have a child always a selfish act? I wish I knew how other people decided to have kids. If not for FX it seems like this would all be so much simpler…
I desperately want another child for all the reasons you said and more. I am researching IVF-PGD and it is devistating to me to think I might not want another, but that has nothing to do with Holly not being enough for me or amazing. I love being a mother, I always wanted 2 children and after having Holly I loved my life so much as a stay at home mom, I wanted to have three. Now I am in a place where I may not have another at all and we are even discussing egg donor or adoption in the future, we wouldn;t do that now while Holly is so young, but maybe if i am still heart broken and it doesn;t work for us in a ew years we will think about that. I am 35 and as a carrier I have low egg reserve when they looked at me I only had 3-4 Folicals which is not very good odds and the longer we put off making the 20K attempt the less the chances are, but it is hard to spend that kind of dough for a shot in the dark.
Back to some other things. I want Holly to have a sibling, not because she has any special needs but because of the love and amazing relationship I have with my sister. Friendships are great, and there are times when I was not a fan of my sister, but at 5 I asked for a sister and my parent’s did basically have her for me, We were very close up until i was in High School, then for about 3 years she was the annoying middle school sister. Once I left for Collage and she was in High School we were best friends again, and still are, she even lives with us right now as she just returned from the Peace Corps.
I get the idea of not wanting to split resources, but there are so many hand me downs and so many things that you can get for one child and use for two, I feel like unless you are paying for private school, they do not cost twice as much. In fact I feel like other then diapers and formula I won;t be spending any money on the second baby for several years.
OK so I have a friend who has a child with Autism and she got pregnant with the second beofre the first was diagnosed. Now she is working on the third. Her second child desperately tries to engage the onlder one, and she doesn;t like her little brother. So they want a third so that the middle child has both a typical (hopefully) and a non typical sibling als so that when they are adults the two typcial siblings can share in the responcibility of caring for the parents or autistic sister.
In my case, while I hope and pray that Holly will be self sufficent, and at least be able to have a regular job maybe a family with some intervention, I know there will be struggles and I feel that having a sibling isn;t for her to have a caretaker but to have family, just as if she was a typical child, so she is not alone in the world when we are gone.
Obviously it is a very presonal choice, but in my opinion you should do in your heart what you want to do and do not factor in what monkey wants or needs or fragile x at all. Do you want to be a mother again, would you like the joy of having an infact int he house, do you want those experiences, the fact that he wants a sibling is a bonus. also, unless you think you can do IVF-PGD would you be able to have a second Monkey, can you marrage and family bare that weight? could you terminate?
And really I feel like it isn;t selfish to want the experience or joy of having a child that is different from Monkey. While I know this is not your experience, my friend with the Autisic Child, never knew what it was like to be a mom who felt a bond to her child because her older daughter had no attachment or affection towards her. Her experience with her son has be so different. Each child she loves so much, as much as the other, but the relationship is different with each.
Sometimes I wonder how i could ever love a second child as much as i love holly and I want to have everything for her and give her all of me, but then again, by giving her a sibling I am not taking away my love and attention from her, I am adding in that of a younger brother or sister who will play with her look up to her and admire her want to be like her cause mischief with her… Anyways, good luck with whatever you decide, but I just htink you need to strip away everything else and ask, do i want to have another baby, if the answer is yes, then go for it.
Yes, I want another. Could our marriage take the weight of another child with FX? Yes, I’m confident that it could though we would do PGD to give us the best chances of avoiding that. Termination isn’t something either of us could do so the decision seems so much bigger.
I keep thinking that we have to be ready to say we will want, love and be able to support another child with FXS…that is where I stumble.
Though, I do have to keep reminding myself that I thought having a child with intellectual disability was the worst thing that could happen to me and I’ve learned much since then.
oh it’s sooooo not simple!
Our story is very different. I knew I was a carrier so when we first wanted kids we decided we weren’t ready to have biological children. We adopted from Russia. Then we decided to foster parent and ended up adopting our very first placement. At that point I pretty much closed the door on ever having biological children. Except… whoops. Before kiddo #2’s adoption was even finalized I got pregnant. It took me till the first sono before I was ok with this. We chose not to do an amnio or even find out the sex so we could enjoy the pregnancy without too many thought towards Fragile X, but when our youngest son, Toby, (they are all boys) was about two months we did the testing and yes, he has Fragile X. He’s now 14 months and I have yet to let my husband have the vasectomy we swore we were doing right away. The fact is I liked being pregnant (not so much the labor part which I did without drugs) and in spite of the lack of sleep I loved having a newborn. I think we’re done, but at the same time I’m just not quite ready to give up on the possibility that this could happen for us again.
The funny things is that before I had a child with Fragile X I wasn’t willing to experience that, but now that I have a child with it, I’m more open to the possibility of it happening again. I used to fear my ability to love a child with Fragile X, now I know this isn’t an issue, but dividing the resources (time, money, etc.) yet again when my older two have their issues as well… This does cause me to stumble, plus I don’t have an identity beyond “Mom” right now but now that Toby’s out of the baby stage and into the toddler, I feel like I might get some of “me” back so right now I want that and not another kid.
All of that to say… Today I do not want another kiddo or think that’s in the best interest of our family, but tomorrow, who knows? But I’m totally ok with leaving this open – no big decisions needed!
Oh and I don’t think I’ve ever left a comment before but I have stopped in from time to time – I enjoy your blog.
I loved being pregnant too and since I didn’t know about FX it was a blissful time. Monkey didn’t have a lot of delays for that first year either so we really were able to enjoy being a “normal” family through all of that. I would love to be able to do it again.
Another thing that I worry about is how to love to such very different kids should we have another. I know it sounds stupid and I also know a lot of first time parents worry about this when it’s time for a second but if you add in all the additional behaviors and, at time, mind-blowingly annoying-ness (just making up words left and right here) of trying to live a semi-normal life with a child with FX and I do worry that I’ll love Monkey less.
Ouch. I cannot believe I said it…but there it is. I worry that having a “typical” child will make me less loving and accepting of my little Monkey…
Have you considered twins? Seriously, the possiblities are high with IVF although I don’t know if PGD changes that. This is an extremely difficult issue to address and my wife and I our glad things worked out for us so that we did not have to face it. We have an older non-affected son and then twins – girl carrier and boy fully affected. If we had to have a special needs kid, this has turned out to be a pretty good structure. The older son and twin daughter have each other as typical sibling/sometimes playmate, which was one of our main reasons for having a second child. The FX twin gets 2 role models and sometimes playmates – his interactions with them are such like he is a year or 2 younger than his twin – so he copies what they do and messes up their stuff and 2 siblings that can help each other look after him when we are gone. Of course, having typical and special needs kids has both negatives and positives overall – we are more involved in the community through friends of the typical kids but what we can do as a family is often limited by the needs and issues of the FX kid, and it is very hard seeing on a daily basis how challenged he is compared to his twin and I know his siblings interactions with him will be difficult at times, but we do feel very lucky that our birth order occurred as it did. Anyway, if you do go for it through PGD, I really do think twins might be something worth shooting for. (I thought PGD was quite reliable in screening for FX?) But be warned, our typical children are often more challenging and are certainly less sweet than our FXer!
Thanks Len! PGD is pretty reliable, especially now, but we did meet a woman in Detroit who has a son with FX and she underwent PGD. This was 9 years ago but there is always a possibility. Twins on top of a child with FX seems a bit terrifying to be honest! Though the Yankee in me says, “Yes! Two for the price of one!”