Saturday, July 2, 2016

July, well, it is just hard

Early on, in Weston's life, we had this rhyme that was so crazy but "every July Weston would try to die".  For my long time readers, you get it.  The fear of July was constant.  It always began July 1.  It would come in like a lion.  It was always about the 4th of July that we got the "chat".  The first year that we had the "he will die soon" chat, I almost passed out.  The second year, I was hysterical.  The third year, I almost threw up on the doctor standing in.  Those memories don't fade.  You don't have end of life talks about your baby and then those moments leave your mind.

Weston had so many ups and downs in his life.  I just thought, without a doubt, that he would make it.  For 3, 4th of July's, we celebrated at CHOP and the one before that, we were at DUKE.   It seemed completely normal.  We would party it up watching fireworks at a special spot.  We would eat Rita's water ice and hot Cheetos.  Every year, I would say "Next year, you will be out of the hospital".  I can't decide whether I was lying or not.  Maybe I couldn't believe it myself.  When you are in that moment, denial is the first feeling or maybe that is hope.  I never really could decide.  I always felt like I was bordering both.

Yesterday, our friend Caelen and his mom Katye were flown to CHOP from Miami.  She is so incredibly kind and wanted to know if it gave me bad memories.   I told her no.  My memories with Weston are never bad.  Even the day that we let him go off to Heaven surrounded by the people who loved him.  My favorite stories always seem to have him-either alive or hanging around.  Kinley recently started pointing to him and calling him "Wes".  She is a kindred spirit and a total old soul.  She is going to give us a run for our money.

A few weeks ago, I had the hardest question from the kids.  Easton asked "will my child have PH or a CHD?"  How do you even answer?  Technically, Weston's defect wasn't genetic but there is nowhere near enough funding for CHD efforts so the numbers are about 1 in 100.  I tried to explain this with counting bears and with a bunch of other things.  All that anyone focused on was that Weston had it and he DIED (as was screamed several times by them).

Then, when I thought all was calm, we take Sutton to the ENT to find out he needs surgery to remove his tonsils and adenoids.  I try to be calm at doctor appointments but as soon as he mentioned surgery,  Sutton starts talking about how he can't have surgery at 7 because Weston was 7 when he died.  But the end of us talking, I was crying, Sutton was crying, the doctor was likely crying, and I am pretty sure I may have cussed PH and CHD's a whole lot.

But, it isn't fair.  I have friends who lose their kids everyday.  People always ask how I know them.  Our Philly Heart Mom family is huge.  Our Philly Angel and PH Angel mom groups are great.  We have an outlet.  I am so grateful for them and for all of my CHF and PH family. If I ever have a question, I always have a lot of responses.  You all are amazing.