Wednesday, April 20, 2016

From the outside, looking in

The day that someone says that something is wrong with your child's heart is life changing,  Suddenly, you are sucked into a life of medicine, surgery, rehab, recovery, and heart wrenching decisions that no one ever wants to make.  The days of having a heart child are very "warrior like".  Every heart mom, dad, and family go above and beyond the typical "go team" challenge and we all go into fight to flight.  You celebrate the good times because they are clearly a miracle and beg God for help during the bad times.  I remember walking to CHOP praying with the kids, everyday, going over the South Street Bridge to CHOP.  I prayed out loud for each one of them but more so, in my head to just let us all get through the day alive.

Then, Weston died.  Suddenly, you aren't a heart mom exactly anymore but you are the freaking furthest thing away from a normal mom as ever.  You empathize with hospitalized families in such an intricate way but you have to keep your comments to a minimum because if you let a new heart mom know that your child died from their child's illness, you will feel like crap.  It is never easy to tell a new heart mom that your child fought but didn't make it.  Maybe they think they gave up or that we weren't good enough at cheering them on, but you are automatically the outsider.

If all of this isn't enough, the physical and emotional and spiritual tolls are life altering.  Everyday, my heart hurts like being stabbed.  It doesn't go away.  I never ever forget that I am missing one of our kids.  I see kids that would be his age and just cry because that seems so big.  Then, there comes the crying.  I cry all of the time.  Ok, so I get myself together for the day but sometimes, still, I wake in the night just sobbing.  How could God take him?  Adam and I went through so much.  We split our family apart for years fully expecting our faith in God to allow Weston to return home with us ALIVE.  My biggest fear was having a carseat but no child to fill it.  I thank God for a lot of things-the love from Philly and our local community, the great care that Weston had, but never, ever will I understand why he felt like Weston needed to go to Heaven.  It was his plan, I guess.  But that is where my rift is.  God and I will never be the same.  I believe and I stand back a bit.  Adam and I go to a parenting class that I love.  Phil is a great teacher and he makes us think.  He is also the only preacher than I have ever told that I want to run away from church.  Going into church now makes my heart pound so hard that I can't even hear for the start.  That is what being an Angel mom is.  We celebrate our Angels because they will always be in our heart.  I am forever Easton, Weston, Abby, Emery, Sutton, Avery, Ellie, and Kinley's mom.  Angel moms, celebrate your Angels.

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