Maria and Jaxon

My friend had her baby.  And, 10 days later, he’s still breathing.  :-)

My friend, Maria, has so sweetly given me permission to write about her and her baby boy, Jaxon.

I’ve written about how Jaxon was given a poor prognosis before he was born.  What I haven’t said is that he was diagnosed with Tetrasomy 9p.  The same genetic disorder that my Elliana had.

Maria had her c-section on Monday, September 23.  And Jaxon was born alive.  Breathing on his own.  Not in distress.

He lived.

I’m not sure how long they were in the hospital, but I know that they’re home now.  I think the doctors sent him home expecting that he won’t live for very long.  So my friend, Maria, is mommying him for as long as she has him.

And I hope that that’s very long time. 

Maria and I talked on the phone for a little while last night.  I wish we lived closer.  I wish I could meet this new mom and this little boy.  I wish I could hug them both.

But oh, this just hurts so much.  I do love this little boy, Jaxon, so dearly.  I’ve never met him, but he has a connection to my little girl.  And I want him to survive.  I want him to live. 

And at the same time, I miss my little girl so much.  SO. MUCH.

Please pray for this little boy as you think of him.  I don't want his mom to have to say goodbye to him.

Tomorrow is Elliana's first birthday.  I’ve been trying to think of what to do on her birthday.  I’ve wanted to do something special with the kids.  Levi, in particular, is excited about Elliana’s birthday.  He wants to send her some balloons.  He also wants to send some cake with the balloons.  Not sure how we’re going to manage that one, but we’re definitely gonna try.  :-)

I’ve also wanted to do something meaningful on her birthday.  Something significant.  And I think I finally know what I want to do.

Elliana was born with a broken body.  She died because we live in a fallen world.  A world where there is sickness and brokenness… and death.  I’d like to do something tomorrow to love someone else who is suffering and hurting because of this broken and fallen world.

I think of parents of NICU babies – babies who are sick or ‘broken’.  Babies who may not survive.  And I really want to do something to love one or two of those parents.

So tomorrow, I think Jason and I will do a little shopping.  We’ll put together one or two gift bags for parents of NICU babies in honor of our baby girl’s birthday.  And then we’ll take them to one of the hospitals.  Maybe we'll offer to go and pick up some lunch for these parents.  Not sure if I can do the hospital that Elliana was born in.  Maybe.  If I can’t, we can go to a neighboring town’s NICU.

I know that what these parents really want is for their baby to be healthy.  To live.  I wish I could give them that.  But since I can't, maybe we can meet some of their physical needs?  And love them at the same time?  

That's what I hope to do, anyway.

If you have any suggestions for things to put into a gift bag for parents of NICU babies, feel free to comment below.

I know several people out there love my little girl.  If you’d like to do something to celebrate my baby girl’s first birthday, just go love someone who’s hurting.  Widows, orphans, the poor, the suffering.  Just go and love someone.

At this time one year ago, she was still alive.  She was kicking, and hiccupping, and objecting to monitors.  She and I were together in a hospital bed, entertaining visitors, watching Downton Abbey, and making frequent trips to the bathroom, thanks to all of her dance moves on my bladder.    Her heartbeat was strong.  She was squirming and… living.