Thursday, June 17, 2010

Three weeks and going...

It seems like we are at the place that we will be for the rest of our lives. Well  how we cope with Owen not being here, that is. There are strange reminders here and there. The common, "I miss him" or "I want him back" and the occasional frog in your throat feeling. This is just how life will be for us. It's actually a good thing. It would be terrible if we were to ever forget we had this beautiful being in our hands and care for seven months. I think it will be especially difficult if we have another child and then thinking about how old Owen would be now and how he would be a proud older brother. Of course if we never lost Owen it's doubtful that he would of even had any brothers or sisters. Maybe a goldfish...MAYBE.

 It's been three weeks now since Owen left us and we are still waiting for his hands and feet plaster prints to show up at our doorstop. The nurse said that we would get them the next week. I emailed the bereavement program at CHOP to see if they can track it down for us and find out what's going on. It would be a tragedy if we did not get those and it would make me wonder what the heck happened to them!

 We are trying think of a good fundraiser idea to raise money to pay for Owens' memorial service expenses. Maybe like a spaghetti dinner or something? Any better ideas? I always wanted to try to do a raffle. Those always seemed fun to me. Anyone have anything cool they want to raffle off?

Going back to work wasn't too bad. All the Fathers Day commercials on the radio aren't something I really want to hear but, I'll just leave the radio off til Monday. Other then that it's been pretty normal. Of course there are the people who don't say anything and you wonder, "Do they know and aren't saying anything? or don't they know?"

I'm still working on getting the slide show and service up. I'm getting closer.

One question we get asked allot is, "When are you having more kids?" Which will be one of the subjects in the book that I'm writing entitled, "Things Not to Say to Someone Who Just Lost a Child." But since everyone keeps asking here goes...

 It's not that easy for us.
Ashley and I both have been testing for the Jagged 1 mutation that is the cause of Alagilles Syndrome. We haven't gotten final results but, preliminary shows that Ashley is a carrier. If this is true, then that means there is a 50/50 chance our next child has it. Now it could be not as severe as Owen's but, it could be worse. I don't his liver disease could of gotten much worse... Ashley has to get more blood work drawn for this and we might have to go to CHOP to do it. Which I think we can handle. We don't have many bad memories at that place... just one or two and we won't be going anywhere near that wing of the hospital. I know the majority of my time spent with Owen was in the hospital so why should it be a bad memory? If she does have it we are not sure what we or the doctors will do. Recommend checks on her organs maybe? She obviously doesn't have a severe form of it.

It's kind of ironic. When we would fill out "family history" reports. I was always the one with all the problems. We thought for sure I was the carrier.

So then what?
 Well we could do In-vitro which, is super expensive and not covered by insurance. But we are still not sure about our moral standings on that issue. In our case, they would have to grow embryos and do biopsies to see if they are carriers of the gene or not.  If we can get pregnant on our own are we really trusting in God with getting In-vitro?  Are we saying, "I'm scared God is going to give us another baby that will die from the same disease." Or did God bless us with the technology to take away these diseases at the expense of a child/embryo that was formed in a dish? When does your body get your soul?

Can we get pregnant on our own?
Yes, but we needed help from a specialist. We have to remember about Ashley's other gene mutation, MTHFR.{Ashley would like to specify at this point that everyone has genetic mutations; she is just lucky enough to know all hers} Which put her on bed rest for a few weeks and really made post delivery very scary.

That's where we are at right now... Not really sure! I know we would like another child and life is pretty boring without 'em and we ain't getting a dog.


  1. Thank you Ian and Ashley. Thank you both for your honesty, your candor, your faith and strength. Thank you for being honest with your questions and struggles. It is really humbling to watch and read. I know you hear this often - but you guys really are amazing, and watching you as you walk through these things has a very real effect on our lives. I know the cost was great (and that that is an understatement that you might want to add to your book.....). Praying for you.

  2. we love you guys, and continue to stand with you.

  3. The decision to have another baby (and how to go about it) is for the two of you (and God) to decide. Don't let anyone make you feel bad, guilty or anything else with whatever decision you make!!!! And, remember, it is not a decision that needs to made in the immediate future! you have the rest of your lives!!!! Can't people respect that???? You both will have to feel comfortable with whatever you decide. Nobody is walking in your shoes or will have to walk in them.

    Anyway, I will now get off my high horse and move on to a different subject!

    Uncle Doug and I will do ANYTHING you need us to do if you decide to do a fundraiser!!!!

    We love you and are continuing to pray for you!

    PS--I know that Father's Day is fast approaching.....and on that day, i will be thanking God for the wonderful daddy that Owen had!!!!

  4. Ian,
    An auction might bring in a little more cash than a raffle. You could ask friends and family if they would be willing to donate something and then auction the items off individually to the highest bidder. This could work especially well if you have any friends who own their own businesses and could donate a service or a gift basket of products. I don't have any money, Kirk is still waiting for a kidney so our income is very limited, but I do have art. If you decide to do something like this let me know and I'll donate a painting, I can't promise it will bring in big bucks, but you never know...

  5. I think a garden tour with refreshments would be nice......Perhaps some delicious pound cake with luscious strawberries and a dollop of fresh whipped cream...

  6. Eagles/Dallas tickets to the highest bidder

  7. I'm so sorry. I recently lost my son on June 11th due to AGS too. I had heard about an Owen who recently passed, but didn't know who he was, and I just happened to stumble upon your blog, and realized this must be him. Maybe our little boys are together now playing, waiting for us to come and be with them. I'm not sure if I'm a carrier or not, and at the moment I'm between insurance companies and so I don't have insurance at the moment, and I've heard it's really expensive. Regardless, I want another baby, and I'm sort of working on that. I miss my little Blake, just as you miss your little Owen. I hope we both find some peace soon. <3