Tuesday, April 14, 2009

The Waiting Game (and how to play it)

(The third in an occasional series about pregnancy and chronic illness.)

A lot of the discussion in the first two installments of this series on pregnancy and chronic illness deals with what happens once children enter our lives: How do we be the parents we want to be with bodies that do not cooperate? In the ever-evolving dialogue of Can vs Should, it is an essential topic, one we need to keep picking back up.

But today I am thinking about the tricky terrain that comes before a baby, the decisions and risk analyses and variables we must weigh when figuring out how it is we will become parents.

For some women, infertility or infertility as a result of other existing illness is the issue. For others, being able to conceive children may not be a problem but due to high-risk medical situations, carrying them is. For others, it is a combination of both.

Regardless of the reasons why things don’t happen quickly, there is still the waiting game, the period of time between when you first realize things will not be easy or quick and when you actually have a child, whether through adoption, IVF, gestational carriers, etc.

Now, I do not claim to be a veteran in these matters and like many aspects of daily life, there are some conversations that will remain offline. Already there are many, many writers and bloggers who speak compellingly about infertility, adoption, and other options. But what I do know is that just like there are so many universals to living with chronic illness, there are many universals to this experience no matter where women are in this wait or why it is they are waiting, namely:

Every decision is deeply personal and should be respected, not judged. In the end, it is your family and your child’s future that matters, not what other people say or think (if only it were that easy!) And of course, the same applies to decisions to not have children after all--only you can truly know what is the best choice.

Each person’s situation is unique and cannot be applied to other couples with other sets of variables (for better or worse). Even women with the same diagnoses can have very different outcomes and different priorities going into things, so do your research and talk to everyone you can, but remember that what works for some people may not be the best fit for you. And that's okay.

I also think that sometimes the hardest part of the waiting game is interacting with other people who might not know the whole situation or might not know what to do or say. It’s a shifting landscape for everyone involved:

If we want to talk about it, we will. If we don’t bring it up or deflect the conversation, take that cue from us.

Don’t think because we don’t want to talk about this particular aspect of life that we don’t want to talk, or get phone calls, or be the same people we were.

There is a difference between listening to us and advising us. When we want to fill you in but are not yet ready or interested in feedback, respect that. If we’ve brought you into these kinds of discussions it is because we value and respect your thoughts, but know there is a time and a place for your take on the situation. Sometimes we need to figure out how we feel about things before we can productively process what others think or feel. (I'm sounding a bit demanding here, aren't I? Rest assured these are the same expectations I have for myself and my own personal conversations about this.)

What you may see as a positive may represent a loss to us, or vice versa. What may seem difficult or not ideal to you might just be wonderful news to us. Everyone involved has a right to his/her emotions, but it’s important to remember (or even expect) that there is no guarantee we will respond in the same way.

Please don’t think that people in this waiting period don’t want to hear about other children (or pregnancies), or spend time with other children. Our lives are undeniably richer because of the children already in them, and nothing going on in our lives could take away from that. I can’t speak for anyone but myself but the way I see it, there is no defined quota of babies or good news out there so your good news is just that—good news. It has nothing to do with my situation or my potential to have a family. Why would I begrudge someone else for having the very thing I know is so worth having? So no weirdness or walking around on eggshells, please!

Like I said, I’m certainly not an expert or veteran in all of this, and I know many of you have seen and experienced much more. If you have other considerations, suggestions, or general words of wisdom for everyone involved in this, please leave a comment.

(Editor's update: I forgot to mention that the best thing you can ask for are these words: "We're here for you and support you in whatever decision you make." Fortunately, this is is something I've heard often.)

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A totally unrelated PS--Notice the new look at A Chronic Dose? Many thanks to Pink Dezine!


Melissa Griffin said...

Hey there...I am wondering what sparked this? Did something happen? I certainly hope not. All I can say from "experience" of course it is wonderful to hear about everyone's news but when you are someone struggling with something of your own it may sometimes seem as if we are not excited even if we are.
Its one of those things where we are happy for the person sharing the news but sad for ourselves.
Yes, no one should feel as though they have to walk on eggshells but I think some people do because they are not sure what else to do.
All I can say is each person has some sort of struggle in their life and like you said we all have to be respectful of that.

Laurie said...

Hey Melis,

I totally agree with you--I think people might act weirdly or walk on eggshells because they don't know what to do or say, and don't want to make things difficult. It's a tricky situation for everyone, I think, and you're right--if we do our best to respect everyone's situations then hopefully everyone will come out of it feeling okay.

Lyrehca said...

Great post and beautiful new design--I owe you an email.

Audrey said...

Well hello hon. I guess I can tell what's been on your mind up north. :) This is definitely one of your posts with the most attitude. It's markedly different and it's nice to see another of your candid voices.

Best wishes to you and your whole family during this exciting time. I miss you and I'll be home soon (1month and a couple days). Kisses!!!

VAF said...

Hi Laurie,

First off, I love reading your blog! I have PCD as well, recently underwent IVF, and am now pregnant with a singleton. It personally really helped me to speak with a woman who also has PCD and underwent IVF before I went through the process myself. If you ever want to talk about it or ask questions, I'd be more than happy to. Best of luck with whatever you decide!


Kairol Rosenthal said...

Great post Laurie.

I'm a cancer patient, and know that there is a lot of support brewing for oncology fertility research and options. However, studies show that most of the emphasis is on fertility preservation and treatments and not on adoption.

Recently, an oncology fertility nurse said to me, "I just tell my patients not to worry if they want to adopt and have cancer. It is very easy and is really not a big deal."

I just wrote a book about cancer in young adults and my research about fertility shows that adoption is actually quite a challenge for cancer patients and I assume others with chronic illness too.

What do you guys experience as patients with chronic illness? Is adoption ever talked about? Is it hard to adopt when you have a chronic medical condition?

blog: http://everythingchangesbook.com/

Laurie said...

Nika, great to hear from another PCDer--there aren't too many of us! So happy to hear things are going well for you. Yes, we should chat at some point.

Kairol, your raise some really important points (as always!) I think people with CI and cancer have some similar challenges in this regard.

What I know so far is that it can vary state to state but a general rule of thumb is that if you can prove your chronic condition is stable or managed, agencies will work with you. It depends on the illness, agency, location, etc, I think. I know some readers here have left comments about adopting their children in the past, so any input from you parents out there would be awesome.

Anecdotally, I also know of some patients with serious conditions who have not used agencies but have gone through lawyers and birth mothers directly...and I think the presence of CI was a factor in this.

Danimal said...

Hi Laurie:

I love the new look of your blog..it's lovely!

I can empathize with you. My husband and I are on the precipice of all of this too. I suffer with severe chronic pain and take significant pain medication (I also just had a neurostimulator implanted in January). All of this means that if I'm blessed with a pregnancy once we start trying, it will be high-risk. However, I found a wonderful maternal/fetal specialist at MGH who will be working with me. He spent 1.5 hours with me for a consult and said a lot to alleviate my anxiety. I'm not sure if you already have a similar doctor but if you do not (and you're interested), email me and I can give you his name.

Take care,

PS-I am the mutual friend of Nevin Fox's, by the way (I spoke with you on Facebook and, of course, I bought your book. I posted a link to it on my blog!). ;)

Anney E.J. Ryan said...

LOVE the new layout!!!!

Laurie said...

Thanks, Anney, glad you like the new look! Hope things are going well in PA!

Thanks Danimal as well for the thumb's up on the new design--after a long winter, I felt the need to shake things up! It's nice to connect off of FB, and thanks so much for linking to the book. I've been wondering how you've been doing since your surgery, and enjoyed checking out your blog. A relative just underwent a second spinal fusion, this time with rods, screws, etc so while I cannot imagine the daily pain you must have, I've definitely learned a lot watching this whole process from the outside.

We've been working with a team at BWH and they're great, but they are very difficult conversations and sometimes we don't always get the answers we *want* to hear...but that's life, I guess. To be continued...

kendraro said...

As a person with CI that is really being hit recently with the impact that my health has had on my 11-year-old son,I feel like I should chime in here. I would say if you are going into it, go with a mate that is 100% there with you, and get your support people there from day one. If any of your family doesn't "get it" about your health now is the time to clue them in. Get good about taking care of yourself and saying what you need. If I could do anything differently it would be to be more assertive about my need for help in those early years. The thing is, kids need consistency, and it is hard to do that when you are up and down with your health.

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