Strength

It has been another rough day. I felt more defeated this morning than I felt yesterday. But, we made some progress today. Our fliers came off the printer, and were delivered to me. I was able to leave work a bit early, and take some fliers to my old office, so they could be posted. I used to work for a large corporation, so hundreds of people should see them there. I also got a few mailed out to friends and family who are too far away to drive to. Hopefully, these help to get the word out about Wyatt, and HLHS. 

I went to the little heart's website this morning, and found a case study about how they are correlating the fontan procedure to liver failure. Bummer. Another hurdle to potentially cross down the road. Ugh. I also was talking to my old boss, and his niece was born with HLHS about 12 years ago. She unfortunately was one of the ones who couldn't even be operated on, and while she waited for a heart for transplant, she passed away. She lived about 6 weeks. Poor baby.  Double Ugh.

There are so many things we are planning to ask our OB and our Cardiologist the next time we see them, but I imagine no one has the answers to the questions we have.
*Do we know for sure how severe Wyatt's HLHS is? I.e. could he possibly be one who can't have the 3 staged surgeries?
*Will I be able to breast feed or pump for him, or is that option pretty much out the window?
*Is there any information at this point that can help us to understand what to expect after birth, or are we just left waiting to see how things go?

We are trying so hard to be prepared for all of this, and yet we have NO idea how to prepare. None whatsoever.  Triple Ugh. 


People keep telling me things like "Good thing you're so strong"...and I really appreciate the support. But, the thing is, I don't feel very strong. DJ told me today "Hang in there babe", and I feel like I am hanging in there, but only by a thread. And I am sure there will be a day when that thread is going to break. There will come a day where I just sit down and cry, I'm sure. A few times. It's bound to happen. And I am sure after I am done, I will feel better. Some sort of make shift release. But until then, I feel numb. There are day to day tasks that I get done each day, and then looking back on the day, I don't really remember doing them. Mundane things that don't matter much anyway, but it is clear to me that I am running on auto pilot. I have been absolutely exhausted the past few days. Exhaustion to the point where my eyes burn just from keeping them open, and I imagine I am just mentally fried. We still go to bed at a decent hour, we still get a decent amount of rest. I think emotionally and mentally, I am spent. And it hasn't even really started.


I keep reminding myself that we are not the only family out there who has been through a situation like this, nor are we the last. We are also not the worst off. Of course, the situation seems HUGE to us, because it is our lives, our son, we are dealing with. And to everyone else who had a CHD diagnosis, or a child with developmental disabilities, or a physical handicap or deformity, it was huge to them too. I totally understand this. Everything is relative. 


I am hoping that we can continue to make progress in our "preparations" for Wyatt's arrival, and that the day to day gets a little easier to deal with between now and October. I hope we get a little reprieve - a calm before the storm. And I hope we end up finding other families to connect with. Other families who are feeling the way we feel, dealing with the things we are dealing with, who can relate. I also hope our support system continues to grow, Wyatt's facebook page gets out there to more and more people, and we find ourselves surrounded by an Army of Wyatt supporters. 

In the long run I would love to see our story help others. CHD's are the #1 birth defect, take more casualties than all types of childhood cancers combined, and yet the funding for CHD research is 5 times less than that of cancer. I hope that our story, combined with all the other families stories can help to change that, someday.