To Have Another Child?

In the past before Kyle and I started trying to have children, we had agreed that we wanted two, but I had always joked that we would probably end up with three! And then we started trying and getting pregnant was surprisingly easy for us. Staying pregnant turned out to be more challenging. And after three miscarriages in a row, the idea of having three children suddenly felt rather romantic.

When Cyrus was first diagnosed we were both slammed by waves of guilt. It very much felt like it was our fault. He had inherited this disorder from both of us. Yes, we knew we were at slightly higher risk than most couples, but I read all the research on the topic, and the risk felt small - an additional 1-2%. And yes, we went through genetic counseling. Everything came back clean.

But if I've learned one thing from my miscarriages and from Cyrus's diagnosis, it is that statistics don't matter. I mean they do matter! They can tell you a lot when you're talking about a population of people or making hospital or public policy! But they don't apply to the individual. As one of my doctor's put it when I was looking for reassurance - for the individual, the chances are either 100% or 0% and you can't know until after the fact. She was not particularly reassuring, but she was honest which I found to be far more helpful and refreshing.

It took a long time, but eventually I came to terms with the fact that it wasn't our fault. That this disorder is so rare that no screening ever would have caught it and there was no reasonable expectation of complications or problems.

But I cannot plead ignorance anymore. Should we have another child - we know exactly what the risk is. And it's not 2-4 percent - it's twenty-five! And for a time, that romantic ideal of having three children seemed really far away.

I still want it though. But for awhile, I felt like I wasn't allowed to say it out loud. That if we were to try, the world would call us selfish and irresponsible. I felt judged - or maybe I judged myself for having this desire knowing there could be some pretty big complications.

When I expressed my doubt that we would have any more children to a very dear friend when Cyrus was only five months old, she expressed shock that I would give up my own dreams. And that sentiment gave me hope again. Hope that I was allowed to want this and that not everyone would judge me for it. That I didn't have to judge myself for it.

Some afternoon not too long after I was hanging out with one of my sisters. We were playing with Zillow - looking at housing prices and dreaming about the homes we wanted to buy and build. I commented about wanting a three bedroom home, and she seemed startled. She asked what I needed the extra bedroom for. And I told her, "Oh you know, it's nice to have an extra room, or who knows we might need it if we have another child."

"You would have more children?"

And there it was! I felt defensive and irritated that I felt the need to defend myself.

But it bothers me. It bothers me that the world feels like it gets a say. It bothers me what those assumptions imply about Cyrus's life. That if you know there's a problem, that we would not have kept him or that his life is not worth living.

I know that we would have kept him. Because during the second trimester I was extremely anemic, to the point where my doctor was concerned that he might have Thalassemia - a potentially lethal disorder where he is not able to use iron to synthesize hemoglobin on his own - so he was potentially stealing all of mine. She ordered a genetic test for me. But the lab screwed up the test - and the results were inconclusive. At my next appointment, which was scheduled with a different OB entirely on my regular doctor's day off - she came in anyway dressed in her casual clothes in a total panic - telling me I had to go get this test done again as soon as possible - so we still had time to decide whether or not we wanted to abort if it turned out that he did have this disorder.

I remember telling her quite calmly, that it didn't matter. I would get the test (though maybe not as urgently) just so that we would know and could prepare if need be, but that if this child wanted to be born, he would be born. That whatever obstacles or health problems arose, we would deal with them as needed. Going through three miscarriages of very wanted pregnancies can give you that level of fortitude and commitment.

I was terrified though. And when I found out a week later from one of my dad's cousins that Thalassemia actually ran in the family - I freaked out! But it still didn't matter. When the test came back negative another few weeks later, I was so grateful. We were going to have a healthy child!

After Cyrus started having seizures and eventually received his ADSL diagnosis, I remember feeling so grateful for that scare. Because it meant that I knew that I would've kept him - that in some weird way I made the choice.

And it's certainly a choice that I have not regretted despite a few in my life trying to convince me that I should. As I have said before, Cyrus has given me two things. A greater sense of awe in all of life and development. Watching any child make the smallest achievement feels like a miraculous accomplishment. And when Cyrus does something new, it quite often brings me to tears - the best kind of tears. And he's taught me to be so much more present and grateful in every aspect of my own life.

How can I regret a choice that brought me him and brought me to this level of gratitude and awe? I can't.

And suddenly we're nineteen months into this journey, I don't really fear the possibility of having another special needs child. I mean, we're already living it and it's crazy and messy and it has stretched us and been all consuming and is freaking beautiful and sometimes really hard and sometimes even really easy. No seriously, I said easy!

I could totally do this again if I had to.

And that's when my husband drops a huge dose of pragmatism on my head. I need that sometimes because that last epiphany was definitely an emotional one (though definitely valid and a true realization about me and where I am at this moment).

Cyrus's care really can be all consuming at times. It's getting harder to get around as he's getting bigger. The boy has a minimum of four appointments a week and a wheelchair that takes up all the space in the world. His medical bills are frighteningly huge and in order for him to continue receiving his fantastic services and care we have chosen to try and stay in one of the most expensive places on the planet in terms of cost of living.

So I have to ask myself some of the other practical questions about the situation. I'm emotionally okay with the possibility of another child with a problems, but is everyone else? Does my family have the emotional capacity and strength to handle two of these? What about if Cyrus dies? Can I go through that twice? Can my family?

What about financial resources?

What about time - will having another child, healthy or not, take away from Cyrus and his needs? I imagine, every parent asks and weighs that question.

On the other hand, can I manage the next ten years without accidentally getting pregnant? I suppose I can - there are options, but there are consequences to those decisions as well.

And if we decide we can't have another ADSL child for whatever reason, can I emotionally get through a selective abortion or go through the process (and expense!) of in vitro fertilization when there's no guarantee that it will work?

What happens if Cyrus defies all odds and outlives us? What will happen if he doesn't have someone in this world that cares for him unconditionally? On the other hand, is it even remotely fair of me to expect a sibling or cousin to take on that responsibility?

I have been thinking about all of this for awhile now. I think that if Cyrus had been healthy we would be talking about baby number two right now.

And I had the privilege of having my youngest niece over to visit a weekend or two ago. And watching how attentive and sweet she was to him just makes my heart ache. She was more than ready to tell me what he was upset about or that he wasn't! She was just kidding! He's actually happy right now! And Megaman is his favorite toy because blue is his favorite color! And she's going to roll on the floor with her legs up in the air just like him! And I would just love it if that kind of beautiful interaction was more of a regular thing!

I don't know that I have satisfying answers to any of these yet - as another dear friend has told me on a few occasions "It's too soon." But I'm definitely poking at it, talking about it, and considering so many different pieces.

I know there are families with more than one special needs child and others that decided that they couldn't have anymore. So many models for me to look up to and be inspired by. So many sources of strength and inspiration. And I think I understand how families could make each and every one of these choices better than I ever could before. That understanding, rather than judgment, can only be a good thing in my mind and is yet another example of how Cyrus and this experience has made me a more compassionate person.

I will admit though that sometimes I find that I envy families that had a healthy child or two first. The ones that didn't have to weigh all these decisions quite as heavily - the ones that didn't have to fear getting pregnant.

Strength Training

True confession: I hate exercising! I hate it!! I enjoy physical activities like playing a game, hiking, or biking. But exercise for the sake of exercise is absolutely dreadful. Cyrus seems to be trying to help me out though. His favorite thing right now is to be lifted up and down or even just rocked back and forth like a pendulum. And strangely enough, I have recently discovered he likes it better when you do this slowly rather than fast. Which actually makes it harder to do, in terms of strength! And while I hate weight lifting just as much as any other exercise, there's something far more rewarding about it when you get smiles and giggles out of it.

And over the last few weeks the little guy has decided that mom's strength training routine needed to be pushed up a notch because after staying at a consistent 22 lbs for the last 2- 3 months, he's suddenly decided to eat us out of house and home (seriously, this tiny child is now eating more calories a day than I do) and put on two pounds in under a week!! Let me tell you, my arms have been feeling it! You wouldn't think that two pounds would make that big a difference!

But anyway, I've been wondering about what this means in the long term. Wondering about how other families cope once their child outstrips them in size and weight. What happens when Cyrus weighs as much as I do, but doesn't move independently?

When pondering such questions, I tried to do what I always do! Research! Only, I don't really know what to call it, and basically found two types of results:
1) How to help your overweight child lose weight.
2) And too many a rant about how the US has absolutely no services or resources for special need adults and their parents often take care of them until they are no longer able to always worrying about what will happen to their children when they are no longer around.

And while both are unfortunate situations, neither is really applicable to my current mental musings.

A friend of Kyle's has a friend with an immobile child - and her comment was that his dad was just really strong.

I don't know that I really take comfort in that answer. Kyle is really strong and actually likes exercise. (He's weird like that). Because I would like to continue to take part in getting Cyrus around. I certainly don't want to have to put all of that on my husband.

I will remain open, keep doing more research, and talking to more people. Maybe even reluctantly do some exercise and learn techniques for moving people around that don't want to be moved.