I’m mad at God.

I promised honesty.

Well – there’s honesty for you.

I am.  I really hate that we’re going through this.

I  hate that my son is suffering.  I hate that his heart will eventually be repaired but he’ll never truly be well.  There’s no cure for a heart defect.  And he’ll (we’ll) deal with hospital and doctor visits – for the rest of his life.  I hate that every time I read about another one of Evan’s heart buddies dying – I fear the worst…

I hate that my daughter doesn’t understand what’s happening and misses us.

I hate that my husband worries for me, worries for Isabelle, worries for Evan and has to deal with the worries of providing for us.  I mean…how can you not get stressed when you receive 22 hospital bills in the mail – in one day.

I hate that I’m stretched so thin between Evan and Isabelle, hate that I feel like a failure as a parent, an unattentive wife.

Hate that we got a taste of home for 2 glorious weeks just to have it taken away from us.

And I blame God.

I do.  Because I’m so mad and so frustrated and at the end of my rope – that I need something and someone to blame.

I know people are trying to be supportive and sometimes don’t know what to say – but it’s really hard for me to hear and digest, “You were chosen for this because God knew you’d be the best person for him.”

Because, I’m not special.  I’m just a mom –  who loves her son so much is hurts.  And I’m just doing what I’m doing out of love.  A mother’s love for her child.

I guess I’m also mad at God because He keeps giving me glimpses of healing.  But, just doesn’t already sweep and in and fix it all.  I know He performs miracles – why is He waiting for so long to already perform it.

I’m mad at God because He keeps giving me hope that Evan is going to be alright but all I see now is suffering.

My heart is hard.  I don’t want it to be.  I also worry that God will be angry with me that I’m so angry with Him – that He’ll take it out on Evan and take Evan from me.

I’m mad. And it’s clouding all the good.

Friends – God isn’t to blame for this.  I’m absolutely entitled to be angry.  And God is a loving God and knows that I’ll be angry at Him.  He’s my Father.  And just like any child – we’ll be angry when we don’t get our way because our parent isn’t giving us what we want when we want it.

But, yes.  The past few days I’ve been angry at God for all of this.

Thank God He’s a better parent than me.

I was brought into the hospital at the perfect time – before Evan really deteriorated.

I believe God’s purpose for me in going to medical school was to prepare me for this journey of having a special needs child.  It helped me steer the Emergency room doctors and nurses on how to care for Evan – because I knew him (as his mother), knew what he needed (from a medical standpoint) – and was able to direct them on what he needed rather than them guessing on how to treat him.

I was given a nurse on the floor that had years of NICU experience – so she was able to see danger signs in Evan that we needed to go to the CICU.

I was given a cardiologist that presented us with the possibilities of surgery.  What are the chances that the cardiologist that was on the floor on Evan’s admission just happens to be the guru of reading ECHOs?  He saw Evan’s anatomy – which is so complex – and contact not only the surgeon but the Interventionalist to find another solution.  A solution that may not mean surgery right away.

I was put next door to people in the CICU – a baby who just had a heart transplant and a baby who is suffering from an infection to her heart and was in heart failure  – and was able to see their journeys.  Their parents – who are going through so much – were able to encourage me. They promised me a light at the end of the tunnel…but reminded me that the tunnel feels never ending.

God keeps working in my life.  And He’s giving me so much good.  I’m just so angry that I’m failing to see it all.

As a parent of child with congenital heart defect, we’re always worried about death for our child.  We’re always waiting for the other shoe to drop.  We’re constantly living in fear.

But, as a parent of child with heart defect, we also treasure each breath and each day more than the regular person.  I say that with confidence because I have a child who is heart healthy – and I never treasured her health and just her – the way I treasure Evan.  We are thankful for each day – just thankful for another day with our child – even if it means they are on oxygen and in the hospital.

I’m angry.  Yes.  I am.

But, the anger is passing.  I’m being brought back to seeing the good.

Evan is in the hospital – but he’s still here with us.

Isabelle is missing us – but I’ll see her soon and she’s surrounded with a lot of family that loves her.  And I know someday, she’ll see how hard I fought for Evan, and she’ll know that I’ll fight for her just as hard – no matter what.

Craig worries – but his faith is strong and he’s able to compartmentalize his worry and move forward.

And I’m trying my best.  Doing my best with what I have.  And all I have is one of me – and I’ll give all of me to Isabelle, Evan and Craig.

I know that home will be waiting for us.  I know that this next year while Evan waits for his repair and is still growing will be long and hospitalizations are inevitable.  But, home will still be there.  And we’ll find normalcy again.

Because for now, the next few months and year, will be some of the hardest times our family will face.  And I know that – I just don’t like having to accept it.

The anger is passing.  God is letting me be angry at Him.  But, I know He’s a loving God.  Because even in my anger, I can feel His presence, begging me to let Him in, give me hope.

Soon…the anger will pass.