This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Friday, March 12, 2010

Baby blues

Everyone is pregnant! Well, that is how it seems anyway. And I must fight not to feel too envious when I see those distended bellies or wise, old newborn eyes in those sweet baby faces.

Because I want another baby. I do. I thought Joel might be my last one, and I was all set to enjoy it to the utmost. But that was taken away from me. There was no happy babyhood.

I didn't get to nurse a happy and contented wee little babe. Eating was unhappy, troublesome, and fraught with difficulties right from the get go. I didn't get to enjoy that beautiful, miraculous time of watching a person unfolding so quickly, like time lapse photography. Crying, cooing, babbling, talking. Holding up head, sitting, creeping, crawling, cruising, walking. Just like a flower, in fast motion.

Of course, I got to enjoy it once. I am grateful for that, some women NEVER get to enjoy that, don't think I'm not grateful for getting it at least once.

But you might as well waste your breathe telling a heroin addict he "already enjoyed" one hit, and so he should just be happy with that. I just want that wonderful, beautiful, splendid, breathtaking miracle ONE MORE TIME. Can anyone blame me for that?

Steve has always wanted 3 kids, and I was up for it as well, though with some reservations, due to the fact we didn't start our family til I was 36. For sure, absolutely, we wanted at least two.

Now everything has changed for us. I mean, we still WANT that. But nothing is simple or easy for us anymore, and this part of life especially so.

So we toss about our options, none of them seem that great...

But some seem "workable."

We both know we could never start a baby we didn't finish. And with a one in four chance of another sick baby, the odds are just not good. So that puts "natural" means out of the running.

Then there is sperm donor. It might work, though it is expensive and has it's own host of difficulties. How long would it take, as costs soar... What would or wouldn't we tell, and to whom? Would everyone understand if they all were told? What about the child? When/how would we share the details of how they were conceived?

Adoption is also a long, difficult, and somewhat expensive project. And brings us to the crunch: would anyone approve our home for adoption when we have our hands full dealing with a sick and dying child? Just thinking of that makes me feel guilty for even asking for another child. After all, adopted or created with sperm donor, either way we are bringing a little one into a home with stress, worry, and grief...

I don't know what we will finally decide. It is all up in the air. And I really hesitate to write this next part. I really don't know what will be possible for us in the future, so I hate to think that what I am sharing might never come about. But I will risk it and be honest.

There is another song singing in my heart lately. I've been thinking about adopting an older child, somewhere between 3-10. No, this would not be a baby, and I still wouldn't get to watch that beautiful time that is babyhood. But a child who needs love as much as we have love to give would find a home.

You can't interject with any objections here, ha ha ha, but I can imagine them. Believe me, I fully realize (as much as you can until you are in it) that this also is fraught with difficulties. I know older children bring with them many scars and bruises, and not all of them are "fixed" by time and love. An older child could only add to our already stress filled existence even more stress. I know all this stuff.

But I am hearing this song, singing in my heart. "You are wanted. We wanted you. We looked for you, and found you, and choose you, because we wanted you. Come into our home, our family, our life, and we will love you. You will be our child, and we will always and unconditionally love you." I know there are lots of little boys and girls out there who have never heard this song before. Shouldn't someone sing it to them?

And underneath it all, and mingling in with this song in my heart, I can hear another song. A deeper, stronger, but quieter song. I can hear God's song, singing to me "You are wanted. I wanted you and I looked for you and I found you. I rescued you with my own life, and I will love you always and unconditionally." God's adoption song, playing underneath the one I hear in my heart. Such beautiful music, playing in harmony.


  1. I hope you find a solution that "fits". It's not an easy decision for sure! We certainly had our struggles, but after losing our daughter, embryo adoption made sense for us.

    Best wishes.

  2. Hey Christina!

    Do you mind if I ask how expensive that was?? Do you know the stats on how many tries it can take before it works?

    It is something I have briefly considered as well...

  3. Karen, we went through the National Embryo Donation Center (NEDC) www.embryodonation dot org. Their fee schedule is on their website. My costs were higher because of travel (SD to TN). There are a few others that do the same thing and the costs vary substantially, where they act a lot like an adoption agency and handle everything for you (the first that comes to mind is Snowflakes). Another resourse is www.miracleswaiting dot org where you can search for donors and use your own lawyer and doctor yourself.

    As for the stats...I didn't find them very encouraging. I *think* the national average sucess rate for each frozen embryo transfer is like 30%. The NEDC is more like 40-something %. It's a bit ironic how you look at the 25% chance of having another effected child be too risky, yet a 30% chance of an embryo transfer working doesn't look too good! And then, you still have to worry about how many embryos will survive the thaw--I think it's usually around 30%.

    In 2007 we were donated 12 embryos, we thawed 3 (all survived the thaw), transfered 3 and had a singleton pregnancy. I feel like we were pretty lucky to have a pregnancy on the first try. We are scheduled for another try March 17th! So, we'll see how the thaw/transfer/pg test goes this time around!

    Anyway, I hope that helps you along for continuing your "baby-blues" research. Let me know if there are any other questions you might have. Feel free to email me cjleonhardt at spe.midco.net.

  4. Karen, God began singing a similar song in my heart about 10 years ago and thankfully Peter's heart shared the same song. We began fostering and after saying goodbye to three children we are blessed to have had Nichole and Brooke with us for almost 6 years. It definitely has it difficulties but God has taught us so much through this experience and I wouldn't have it any other way. Keep praying, I know God has a plan for your family and He will reveal it to each of you in His timing!