Thursday, August 26, 2010

Not Ok Today

Remember this post....

Oh my heart. It hurts so bad as I begin to relive those days. It is so unbelievably hard to wrap my head around the fact that it has been a year since we found out something was terribly wrong with our baby.  At this time last year I still didn't know if the baby was a boy or a girl.  At this time last year on this day I was in a heap waiting to get to our specialist appointment tomorrow.  Why must I remember...
I guess because this past year has changed me forever.  I had no idea how far I would fall and how strong I would become getting back up.
I had no idea if my little baby was going to live or die and that feeling of hanging in limbo, dangit, it never leaves you.  I would be spending this night in the undecorated nursery praying for a miracle. I did not decorate the baby's nursery because of the previous miscarriage and I would sit in that room and wonder if this was the real reason I didn't decorate it.

I am cranky. I am sad. I am grateful beyond measure. I am full of tears. I am so many things right now and I don't know what to do with them all. Damn the tears, they won't stop. Hot and heavy.

I want to go in and wake my baby to hold him. To have him squeeze my face and smile at me and blow raspberries on me. To hold him and sob for all that he has been through and all that he has to go through still. He is so strong. So much stronger than I am.

I guess I still have grief for all that we missed. For all the time I spent bonding with him through the bedrails of his hospital bed instead of nursing him in my own.  I hate it all for him and yet "it all" is one of the most surreal, life altering, hang on by a thread, fall down, get back up, soul searching experiences I have ever experienced and I know in the end it will make him so wickedly strong. It hurts though to be his mom and not be able to fix it. To not be able to take his place. To endure the endless pokes, meds, check ups and what nots for him.

I spent this morning scheduling more doctors appointments.  Planning more trips to Tampa. Trying to coordinate. I spent yesterday morning running downtown to the compounding pharmacy to pick up his medications.  He was blue today and I realized I didn't panic. I simply went and got his oxygen monitor and did what I know to do.  It's normal...for us.  And I damn sure wouldn't change it for the world.  If I have him to show for it then I will do it everyday all day, but that doesn't mean that I don't grieve for what I dreamed it to be.

I realize now that Paxtons diagnosis is every Mothers worst nightmare and yet it is one of the biggest blessings our family has experienced all at the same time.  The fear that rocked me to my core 12 months ago as I felt my seemingly healthy baby kicking inside me will never be forgotten.  It is what made me remember this week.
Those days where minutes seemed like eternity....

An eternity to get answers and hope.


Oh' but then this...



























This first glimpse of the baby we were unsure would make it.  This screaming 7 pound 14 ounce baby that has rocked our world from the moment we laid eyes on him. I remember exactly how I was feeling the moment this picture was taken. I am looking at my son waiting for something to go wrong. Waiting for him to stop breathing. I am full of awe, wonder, fear and a gratitude I have never known at the chance to hold the baby I was told I may not hold.



















































Oh sweet blue baby boy!  It was seven hours from your delivery to when I was able to see you again. The rollercoaster began.  Emotional and physical.  My heart was utterly broken for him here and he hadn't even gone to surgery yet.

God, I can't even describe it all. Those months. The fog. The lonliness. The fear. It's like a movie I once watched, yet I know it was real because the feelings are so real they let me know. I remember the morning when my son was FOUR days old and he was scheduled for open heart surgery.  I went in at 5 in the morning so I could hold him until surgery. The sheer terror that I would never see him alive brought me to my knees.

Oh' but he made it.  And he made it through his second one too.

Today we have this:

































This baby who happens to be the happiest child I have ever met.  The strongest, funniest, most gorgeous little man!

And when I feel down, I look at him and know that we may have missed a lot, but we gained a lot too!  He is a gift. The most precious, precious gift.  My miracle. The miracle I very literally begged for. Sobbed for. Prayed for.





































So while this week is hard for me, while tomorrow will be even harder, I realize that for all of the struggles and fear, we gained more than I can ever describe. While the dreams we had for our third born were taken away long ago,  we now have new ones. Far more powerful, meaningful, never take a moment for granted ones...

One year ago today I had no idea just how amazing our journey would be....

Love,
J


3 comments:

cici said...

If everyone had a Mother like you, the world would be a better place.
God Bless you and all your boys.

Anonymous said...

Tears of joy, joy, joy!!! That sweet baby boy is such a blessing. It's amazing how much perspective we can gain when things don't always go the way we have planned, but those very things can end up teaching us so very much about life, love and everything in between.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Thinking about you and your sweet family.

Blessings,
Samantha D.
Trinity, FL.

rudysbeat said...

Not sure if we've commented before, but thanks for sharing your thoughts as you approach this milestone. You capture the feelings of this journey so well. HLHS has made us aware of incredible beauty and abject terror that comes with being parents. The significant anniversaries bring forth such a flood of memories. Thinking of the future brings forth hope and breath-stopping fear at the same time. All of this while being completely smitten by these little boys who prove again and again that they are made of indescribable stuff as they fight harder than we ever knew kids could fight.

Praying for your little Paxton. So captured by his peaceful and determined eyes. Praying for your own hearts on this journey and all that it asks of you as parents.

Rolf and Trish, parents of Rudy
Santa Barbara, CA

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