Saturday, January 22, 2011


Yes I'm going there. I'm talking about siblings. 2011 is about tackling things head on and well the prospect of Henry having a brother or sister is something thats been weighing on my mind for well over a year. So prepare yourself for a sneak peak into the craziness that floats around in my head when I think about siblings.

Fact 1: There is a 25% chance that we will have another child with ARPKD. That is if Chris and I actually carry the recessive gene. It cost thousands of dollars for the genetic testing (insurance won't cover it right now) and no matter what the outcome is it won't change Henry's diagnosis. So if we find out that we don't have the recessive gene than we can pro create worry free and that means Henry's ARPKD is a mutation that wasn't inherited. If we do have the gene well then we're back to the 25% chance. However regardless of the outcome even if Henry had a mutation whats to say we wouldn't have another child with it?

Fact 2: Approximately one third of infants with ARPKD don't make it. Yea so lets count our blessings one more time that Henry beat those odds. I would hope that if I was pregnant and got the ARPKD diagnosis that the baby would follow the same pattern that Henry did. Yet Henry is not the norm for an ARPKD child and doesn't follow the typical trend. That being said the idea of having two children with ARPKD is daunting but manageable. I've been there done it and could juggle it if need be. But the thought of losing a baby to ARPKD... well I don't know if I could live with that guilt.

Fact 3: All facts aside am I emotionally ready? I don't know the answer to that question. My heart ache's for another child. Every time I photograph a newborn, or see siblings interacting my ovaries ache. Okay maybe thats too much information but its true. For the past year my husband and I have talked about having more kids. Yet at the end of the day I just can't 100% commit. I don't know if I can emotionally handle the rollar coaster ride of not knowing what could happen.

Fact 4: I'm not a gambling type of girl. I'm a throw caution to the wind, dive head first, don't look back type of girl but when it comes down to it I weigh my options before saying yes. When those people on game shows can walk away with 500,000 dollars or risk it all for 1 million and they choose to risk it all I just about want to smack them. I'd take that money and run. I know a good thing when I have it and we have a good thing. We're a happy family and have a relatively healthy boy so why shake it up?

Fact 5: Henry will need a kidney transplant someday. We're hoping Chris or I will be a match but how do you juggle that with more than one kid in the mix. Tragic things happen all the time to families with more than one child but if you knew ahead of time something would happen would you do anything differently? I want to be there 100 percent for Henry when he'll need us most. Is it unfair to Henry to not get all my attention? Would it be unfair to the other child to not get enough attention? Would having a sibling make the road a little easier for Henry? Is Henry missing out by being an only child?

Fact 6: Thinking too much can make you crazy! Seriously this one topic makes me crazy. Unfortunately there is no right answer. I could debate this subject for hours. There a million more things to consider as well and I pick all those little things a part in my head all the time.

Fact 7: Your damned if you do and your damned if you don't. Ain't that the truth. I'm not sure I will ever be ok with not having more kids if thats the decision Chris and I make. I'll always think about what life would be like with the 3 kids we always thought we'd have. That being said if we had another child and god forbid something tragic happened I don't know how I would ever forgive myself.

These 7 facts just barely scratch the surface of what swirls in my head when I think about siblings. I want so badly to just close my eyes, take a deep breath and take the chance. Yet I can't shake that little voice in my head. That little voice that knows the devastation ARPKD can cause. The voice that gasped when the doctor uttered the words, 'we're taking it minute by minute right now'. The voice that has seen first hand a boy defy the odds. That voice that fully believes in miracles but is not sure a miracle can happen twice.

"What is madness but nobility of soul at odds with circumstance" - Theodore Roethke


  1. What a difficult decision! I am sure that whatever you decide is the right thing for your family- You have to let go of the guilt that you would be in control of the new child's health. Whatever will be, will be.

  2. Hey Jennalle. Can't imagine how difficult it must be to try to make decisions like that (I can't even decide what to have for a meal half of the time). I agree with what people have been saying -- whatever you choose will be right. And whatever you choose will also leave you thinking "What if?", perhaps... but isn't that often the way it is with life? You've got time.