Being Asher's Mom

As many know Asher has hlhs, a severe heart defect, it is the most complex. He is essentially missing the left side of his heart.
My husband, and I found out Feb 2009 when I was 5 mnths pregnant.
Our lives changed that day.

Being Asher's mom meant the night we found out crying myself to sleep, waking up in the next morning with a gut wrenching fear for the life inside me. A life that would face hardships, unbelievable pain, and fight for every minute on this earth.
That was the hardest part of being Asher's mom knowing as soon as he was born I could no longer protect him.

Being Asher's mom meant listening to the lady at the grocery checkout say "well at least it is healthy" Really? I never wanted to explain that i already knew he wasnt healthy-did i love him less? NO
Explaining his defect was usually worse then answering questions about his health, or lack of.
It was painful making the mistake of telling people about his defect, so they could say something stupid like " oh well my neighbor had a kid with a hole in his heart, and he is fine now". WOW-yeah because that trip to the Cath lab wasnt exactly life threatning now was it??? Didnt make me feel better, ever, just annoyed. I never told people,, so they could compare him to a child with basically the equivalent of a scraped knee.
Also would cringe at the bumper sticker reply "everything will be ok, just have faith"... really? how do you know?? I guess since everything will be ok we wont need open heart surgeries, the vent, or intensive care now would we?? Being Asher's mom meant the need to bite my tounge, and screem at the foolish comments inside, not outside.

Being Asher's mom meant feeling so alone, like the only pregnant woman going through grief, searching the internet and finding friends with children that had the same heart defect. It meant crying as I typed my story, and crying as i read their stories.

Being Asher's mom meant not getting to hold him when he was born, it meant watching the baby of my dreams struggle to breath.
It meant watching the nurses do things like change diapers, and bathe him, things I so desperately wanted to do, but knew he was to sick.
Being Asher's mom meant packing up and moving to the Ronald Mcdonald house, so I could be close to him, but never close enough

Being Asher's mom meant learning more about the human heart then a person who is NOT a doctor should know. I say doctor because I know more about the heart especially the hypoplastic heart then most new nurses.
Being Asher's mom meant learning what all the monitors in the intensive care unit meant, it meant learning to tell the difference between heart failure, and feeding issues.

Being Asher's mom meant signing consent, and handing him over for open heart surgery, again, and again,,, knowing I will have to do it again.
Being Asher's mom meant watching the Dr do CPR on him the day after surgery, and nearly passing out.
It meant watching him struggle for weeks with heart failure, and now answers why, it meant the possibility of a heart transplant, and still in the future that possibility looms.

Being Asher's mom meant never getting to dress him in his cute Newborn Clothes.
It meant learning to find my voice, and make sure he was taken care of protecting him at all costs, knowing him well enough to assess him, and know if he was in painor not, and at time demand meds.
It mean learning to find my voice, and utilize all of my communication skills to defend him, without alienating, and hurting those that took care of him.

Being Asher's mom meant sitting in the corner of his room day and night because there was to many machines and pumps to close to his crib.
Being asher's mom meant finally getting to take him home after 5.5 long months in the hospital.
It meant struggling to get his feeding pump to work, and his sat monitor just right. It meant for the first time getting to spend the night in a actual bed, right down the hall from my son.

Being Asher's mom has been and will continue to be a special journey.
It means never taking anything for granted. I cherish every smile, laugh, and cry.
Being Asher's mom means never giving up, always having faith, and knowing Gold loves him more then I do. It takes tenacity, and patience. It means doing to best I can to take care of him today, not worrying about the future,, if he will need a transplant, if he will make it thru round three,, taking care of him today, loving him today,, i dont know if i will have him tomorrow, or the next day, but i know he is here today.
I KNOW GOD'S EYE IS ON THE SPARROW