Friday, December 3, 2010


I am sitting in the dark at RMH while Pax sleeps in the pack n play. It's been two weeks here at the hospital.  I won't lie, today I am dragging serious a*#.  I wonder how much the heart can take. How much tugging and pulling, waxing and waning, highs and lows, full up of loneliness can one take...

I want the loneliness to end, but somehow when all you do is step outside to get a diet coke and return to the hospital life you feel alone, because outside, out there, are all kinds of people going about their lives. Perhaps preparing for Christmas or meeting a friend for lunch or falling in love. Then there's me, walking the same walk I have walked oh' so many friggin times back to the electric doors that open with my visitor pass key card to let me into a place I would gladly freaking give that key back to.

Only this is normal... This is going about my life and it's lonely.  I want to be Christmas shopping or romping around in the backyard with my boys. I want to not sit in the dark and feel so alone on this journey.  The only thing that softens it all is when I stop typing to hear the in and out breathy sounds of my boys breathing.
He softens everything.
Especially me.
The way he lights up when I walk in a room or sit up  in bed would melt your heart instantly. We should all be so lucky to have such a gorgeous man think we are that awesome!
And so I continue to wax and wane, ebb and flow.
I continue on because I don't have a choice nor do I want to.  And just as hard as hospital life, making the shift from that to everyday home life will have it's ebbs and flows too. It's hard to instantly make that switch, but we will and we will make it.
Am I a little rough around the edges from all this, sure.  Do I snap a little sooner, yup!  Does my patience dwindle, for sure. I have no room for excuses and what not's living here. This is real, important life and when I hear, see or find someone that doesn't realize the importance of that I get snippy.  Then just as easily, I melt, sob and cry. Cry for those people that just don't get it. Cry for getting snippy. Cry for my son. Cry for my other two boys. Cry for this journey that I hate and love all at the same time.
I loaded my car up with oxygen tanks today and I stood in the parking garage in flip flops in the freezing cold because I was unprepared to be here through cold front, staring at my life in the trunk.  THIS is the life I was meant to have and while there are days, much like today, where I wish being busy at work was my biggest complaint, I know that this is what it's all about.  Seeing this little boy make it and rock it and do it all with iv's in his body and oxygen on his nose is what it's all about.
How dare any of us complain...
I am blessed. Blessed because life saw me fit to take care of him and I am honored to do it, even on the days that have me trudging the beaten, worn path I have walked so many hundreds of times before.



cici said...

Dear Jenn,

You are the reason why Paxton is able to handle it all with smiles.
You are the Mother many children only WISH they could have. You are the reason your boys at home will be just fine. You are in your perfect place today, and I pray that your perfect place tomorrow is less lonely and a lot happier.
Prayers and sunshine from across the miles to you and your little hero.

Lorena M said...

You are an awesome mama, and not because you have to be because let me tell you there are plenty of moms that run out on their kids or that have sick babies and they give them up because they can't or don't know how to fight for them or help them fight. You are strong and your kids will know that you fought for them especially Pax he will grow up knowing that you fought with him and for him every day. He is very lucky to have you as his mama and you are so lucky to have your boys they are beautiful and I love Paxton's smile, he really does light it up. Whenever you post pictures of him smiling he just melts me so I'm sure as his mama he must melt you like crazy. I hope that Paxton continues to get better and I really hope he goes home in time for the holidays so that you can be together as a family. It's too bad that children's hospital is so far from your home. Thinking of you and keeping your family and especially Paxton in my prayers!

All the way from California,

Nikki said...

I know you don't know me, but I've been reading about you all and praying for you for many, many months now. Just wanted to let you know there are folks supporting you, Paxton, and your entire family in prayer. Be strong... and when you can't be, know that He will carry you.


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