Four things you should never say to the mom of a singleton transplant kid (or any single child’s mom for that matter)

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With just a few days left until the due date of baby number two, I am still a little incredulous we are at this point in our family life and post-transplant journey with Addison. As I mentioned in the announcement post, getting here has not been easy, and I’m not even talking about the transplant. Of course going through a life and death medical diagnosis with your child, and then living with the chronic disease of life-after-transplant is more than enough to drastically alter any and all of your life plans, hopes and expectations.

Aaron and I had never planned to have a second child. We had talked about our future and were perfectly content with the idea of one child, especially with our wanderlust taking priority in how we envisioned family life. We never closed the door to more children, but when Addison was born – seemingly perfect and healthy – the likelihood of expanding our family any further diminished.

But then we were slammed in the face with mortality. Not our own mortality, but the high likelihood our baby would not survive the next hour, day or week. Sure I had met other families who had experienced horrible things with their children, but just like a testosterone-pumped 19 year old on a motorbike, I naively believed that was never going to happen to us. Except it did. And every day we are faced with the harsh reality of a transplant…it’s not a cure but a treatment.

For the first couple of years after we pulled ourselves out of the dark hole and got our new post-transplant life on the right track, the idea of trying for a second child and once again taking whatever random lot in life we were assigned by Mother Nature was terrifying. Sure the odds were it wouldn’t happen the next time, but it could, and if not a defective heart what about cancer, or some other awful genetic disease? At the same time, an uncertain future for Addison loomed over us like a black cloud. Could we go back to family meaning just me and Aaron?

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Then we went through genetic testing. With confirmation we weren’t carriers of the defective genes which are likely to blame for Addison’s non compaction cardiomyopathy, it was a huge relief. By then, we had already been trying for a year.

Miscarried.

Over the next year and a half, I had another two miscarriages. And the clock was ticking. Loudly. I stocked up on ovulation tests (should have bought stock in Clearblue.)

I turned 40. We went to a fertility specialist. There were many tests, various supplements and drugs. Nothing seemed to make a difference. There was no obvious explanation why we couldn’t get pregnant and stay pregnant.

Then as my 41st birthday approached, Aaron and I decided we would try one final intervention – IVF. We wanted to be able to say at least we had done everything we could, with no regrets. So we went through the paperwork, the financials (ouch!) and all the training. I learned to inject myself, which actually wasn’t that bad, and we were given a complicated calendar chart with what our daily schedule would be during the IVF cycle. But it turns out I was already pregnant. And this time, amazingly, I stayed pregnant.

It hasn’t been the same easy-going experience as I had with Addison. Now I know bad things can happen and sadly they do happen. I am also five years older. Wiser. A little more cynical. Definitely more cautious. But as each week has gone by, I have been able to let go just a wee bit. With each test, ultrasound and echocardiogram, we are reassured. Ironically it is also liberating because we aren’t caught up in the little things that don’t really matter. We don’t worry or dwell on things that I was fixated on the first time – the right diapers, baby wash, organic cotton vs regular cotton, no sushi.

Addison Pro December 2012 08 17-53-48

So back to the main reason I am writing this post. I know generally people mean well and they are trying to be supportive. But sometimes casual comments or questions can be really hurtful. Start talking about infertility and you will be amazed by the staggering number of couples who are having trouble conceiving. Many of them suffer in silence. Over the past few years, we have had so many people ask us about our family plans, which frankly should never be a topic for casual conversations under any circumstance, and I think that’s especially true when talking to parents of a singleton child with health problems. That adds a whole other dimension to family decisions. Please, please, please think twice before you inquire about someone’s baby plans. Here are four things I heard, some many times over, from complete strangers to family members. I’ve included the answers I would have really liked to say out loud:

  1. When are you going to have a second child?
    In the first couple of years post-transplant: Holy freaking hell I am barely hanging on here just dealing with Addison’s transplant. The thought of bringing another little needy human being into the house is the furthest thing from my mind right now!!! Plus I have no flipping idea if it’s our messed up genes to blame nearly killing her. And really, IT’S NONE OF YOUR FREAKING BUSINESS.
    And then while we were actually trying: Well actually we have it all planned out for Feb 23, 2014. Because come one deciding to have a baby is just like deciding to go to the damn grocery store and picking up a loaf of bread. It just happens when you want it to happen. If this was under my control AT ALL I WOULD HAVE ANOTHER BABY RIGHT NOW BEFORE MY OVARIES SHRIVEL UP COMPLETELY!! Plus do you know how much fun it is to really take the fun out of trying for a baby? Talk about romance killer. And really, IT’S NONE OF YOUR FREAKING BUSINESS!!
  2. Oh your daughter really needs a sibling! It would be so good for them!
    Ummmm actually you want to know what would really be the best for my child? NOT NEEDING A TRANSPLANT AT THREE WEEKS OF AGE. Not taking toxic anti-rejection drugs for the rest of her life. Not living with the threat of picking up some horrid disease that had previously been eradicated because some parents don’t believe in vaccinations. Not having to get blood work every month. Not having to answer questions from nosy people who should MIND THEIR OWN BUSINESS.
  3. So much better when you have your kids closer together. You don’t want them to be too far apart in age.
    Again, I go back to part two of question 1. Yeah, so I’ll just put my order in on amazon.ca. They guarantee 5 day delivery. Should have it all timed out perfectly! Oh, should I order a boy or girl? Maybe one of each…twins would be fun because the more the merrier! And again, IT”S NONE OF YOUR FREAKING BUSINESS!!
  4. The clock is ticking…how old are you?
    Since I am a futurist and I knew that it would be this difficult to have a second child I deliberately waited this long. I enjoy feeling desperate and disappointed on a four week cycle. Like clockwork! Yeah!! And it’s so much more fun when people like you remind me of what a failure my body is at doing what seems to come naturally to gazillions of women. Thanks for that!

My intention isn’t to make those of you who have said some of these things feel bad, well ok at least not too bad. I’m sure in my younger, naive days, I put my foot in my mouth several times over. I just hope this will serve as a reminder so we all stop and think. Really, the best word of advice for pretty much any situation is to stop talking and LISTEN. Pretty much works every single time.

Ok, off my soapbox and back to my couch potato countdown for baby number two.

Love,
Elaine

 

 

13 thoughts on “Four things you should never say to the mom of a singleton transplant kid (or any single child’s mom for that matter)

  1. Exactly right. Good for you for saying so. As a Mom of an only child, I say “hear, hear!” Best of luck in this new adventure!

  2. Well said!! It is none of nosy bodies business the tragic circumstances that some of us lives with: whether it be your own or that of a friend or a family member….Your lives are your own to live and whether or not you choose to share some of it should be your choice and yours alone …Here is prayers for a healthy you, a healthy baby, a health Addison for a long time to come and a healthy Aaron…..About two years ago you came out to Abbotsford and did a piece on the struggles we had; both my husband and I having disabilities and trying to raise our two daughters the best way we know how …Emily having hydrocephalus being non verbal and with cerebral palsy

  3. Thanks for writing this Elaine … Bang on ! I have so many close friends and acquaintances that have dealt first hand with the heart break of miscarriage, infertility and IVF treatments … some went on to adopt when all else failed and are happy they are parenting … wishing you every happiness and an ‘ uneventful ‘ labour and delivery … a toast to good health and happiness ❤

  4. ❤️ So love this….. And so true you are an amazing lady who does not have to explain anything to anyone. Saying that I can not wait to see the newest addition to your lovely family. And know Addison is going to be a great big sister 😊

  5. Well put Elaine! Love that you shared your inner thoughts too!! It is courageous to take a step of faith with what you have been through!! Despite all the hard, what a wonderful adventure!!! Can’t wait to meet baby #2!

  6. Bravo Elaine! You are an amazing woman and the pics of the three of you are just so beautiful! I’m very excited about hearing the news of baby #2 and know that Addison will be an amazing big sister! :o)

  7. I agree with the previous comments, very well said Elaine. Thank you for having shared your adventures with the rest of us through your blog. Addison is truly the little princess. And we can’t wait to meet her little sister. Take care, Get some rest.

  8. Hi Elaine
    As you know, I am not married nor have kids. I am constantly asked why I am single. Like there is something desperately wrong with me. I can’t find a man with shared values and other desiresble qualities that I want to spend my life with. That’s why. I didn’t think I would never be married but here at 45 I am still single. And then I get, don’t you want kids? Again, hey I am old fashioned And would like to find a life mate first. So I most likely won’t Experience the joy of having my own family. Makes me sad but that’s life. So I understand all the questions. Your right, people mean well. I try to take it as that. It’s good to remind people that while questions are ok there could be a lot of pain and suffering behind those answers. Maybe we all need to have a bit more sensitivity with each other. With all questions and assumptions we have.

  9. Geez my friend I had no idea… thank you for sharing. And I giggled out loud with the very freaking Elaine-ness of your answers to the tacky questions. I certainly hope I wasn’t one of the ones who asked any unwelcome prodding questions. Surrounded by inquisitive media types couldn’t have been easy! Now c’mon baby! Waiting to hear…

  10. Very true – I was unable to have a second child and IVF did not work for me. I got so many nosy questions and was chastised for making a selfish decision to only have 1 child when it was not something I chose but was what happened.

  11. Pingback: Life after transplant AND baby #2 – Momma’s going back to work (again) | we ❤ addison

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