Frustrated.

I am frustrated. I am one and half years into this journey with Owen and I realized with a good amount of sadness this week, that we are barely crossed anything off the list of what needs to be done for Owen and for those of you who know me well, you know I like to cross things off the list.

Some of you may wonder how I could have a list of things to be done to Owen. It may seem detached or cold even. But for those of you who have children with special needs that have what seems like an unending amount of surgeries or body parts that need fixing, I would venture to guess you understand completely. I have to be detached or even a little cold when it comes to thinking about these things. Otherwise, every time I scheduled our pre-surgical appointments and geared up for another round of hospital stays, sleepless nights, unrest and family upheaval, I would break down and cry or worse. And worse is not acceptable.

So I have a running list. A list of future surgeries, a list of body parts and potential treatments, a list of questions to ask about body parts and future treatments, ideas for therapies. And the list goes on...so to speak.

Currently my list also reflects my frustration and sadness and a little bit of "why me" or "why Owen". It looks a little like this:

Right sided VEPTR 10-4 (Oh why couldn't it just be over??? Why weren't we able to complete it the first time around so I could cross this off the list?)

Which translates to: Oh my God. We have to spend another week in Philly, watching our baby go through that AGAIN. Is there no mercy here? Can I handle this?

Left foot surgery- no date as of yet (and how can we schedule it with the VEPTR surgery looming. And why didn't we fix it when he was 4 months old like the other babies? And when are we ever going to fix it with every 3 month VEPTR expansions?)

Which also makes me wonder- is there anyway to do two surgeries at once? When are we going to have time for all the other parts when we have to expand his ribs EVERY 3 MONTHS for the next 2-3 years????

Right foot- club foot correction- who knows when? (the poor child has had about 4 rounds of corrections with casts 2-3 times weekly. When will this end? When? Why doesn't his foot stay? How much longer can we do this? The answer has to be for as long as it takes.

Knees- bilateral - no date either (because of the VEPTR surgery and the expansions, so again, when can we do this? How do we fit it in?

And the list goes on. So in 18 months, 6 surgeries with a huge 7th on the horizon and as you can see numerous surgeries to follow, I am frustrated.

I am upset we didn't fix other things earlier. I feel like we were so concentrated on the club foot (and why I wonder?) and now his left foot is going to be a very tough surgery. I am worried that if we don't fix his left foot soon, he may not be able to weight bear on it and if he can't do that, he can't stand/walk. And if we missed that boat because of timing and not fixing it earlier I will be crushed. So I have all this panic sitting in my stomach lately and I have no control. His lung/rib cage needs to be fixed first. And you can't operate again for 3 months because his lungs need a chance to fully recover from the surgery and then as I have mentioned, it's time for an expansion. And does the expansion trump the foot? After the expansion he will need to heal and after the foot he will need to heal. I feel like with the exception of healing time, the next year(s) will be spent in the hospital.

Frustrated.