A Child's Prayer

Sleeping, but notice all the toys he's been playing with today.

I know there have been so many, many prayers offered on Aaron's behalf, not only over the past few days, but also over the past five-plus years.  And I think that prayer, faith and love are why he is still here with us, beating the odds, living, loving and thriving in spite of his diagnosis.

Now, before I go farther, please understand that I don't believe for one second that Aaron is more precious, or our prayers more heard than those whose children watch from above.  If love and faith could save everyone, there would be no funerals for these precious ones.  The little angels gone on ahead are no less loved than Aaron is.  Why they left and he stays, I have no idea, except that he's got a mission to perform here on earth that hasn't been fulfilled yet.

Anyway, as to where he is now, he's doing so much better than last night.  This was the x-ray we got of his abdomen about 24 hours ago.  There's TONS of air in there, and it's pushing up on his diaphragm, making it even harder to breathe.  You know when pregnant woman struggle to catch their breath because there's just no room?  Same idea.  And frankly, he looked pregnant!

His girth (measured at his belly button) topped out at 73 cm last night.  This morning it was 67.  We vented his tummy to get the upper air out, and he had a couple of diapers, one pretty big, which helped reduce his lower air.

When I woke up this morning, he was sound asleep on 3 liters of oxygen.  Yeah, I couldn't quite believe it.  He'd been on 6-10 last night, mostly on 8.

And today has been a pretty good day.  He also got to meet with some 3rd year medical students who are finishing up their pediatric rounds.  After their instructor finished showing them the features which would lead them to investigate a chromosomal challenge, she asked if I wanted to say anything to them.

I asked them to always remember hope, and that a challenges like Aaron's don't make for a bad life.  He likes his life, and he's been given the support he needs.  They don't need to sugarcoat and try to hide things from future patients, but they should give as much support as possible, give hope, and give compassion.  I will forever and ever be grateful that my doctors did this.

We also got to introduce him to a couple who is having to make a decision about traching their son.  It's hard, it's devastating, but they left with much more hope than they had.  I think staying was a good thing.

But the title, well, let me share with you a sweet message I got today from a friend. This was her son's prayer last night.

"Please, please, pretty please bless Eh-won and his tummy to feel lots more better!  And for him to poop less.  And for all the airs in his tummy to goes away.  And lets him go home soon 'cause home is good.  Thank you.  Amen."  

Her little boy knows only too well the challenges of being in the hospital, and how "home is good."  He and his family are going through their own refiner's fire.  I asked her to please tell him that his prayer was heard, and that we're planning on home tomorrow.

 The pure faith of these little ones overwhelms me.  I think that's what Christ said when he told us to become as a little child.  I pray that I can learn from these precious souls.

Heavenly Father, are you really there?

And do you hear and answer ev'ry child's prayer?

Some say that heaven is far away,

But I feel it close around me as I pray.

Heavenly Father, I remember now

Something that Jesus told disciples long ago:

"Suffer the children to come to me."

Father, in prayer I'm coming now to thee.

 Pray, he is there;

Speak, he is list'ning.

You are his child;

His love now surrounds you.

He hears your prayer;

He loves the children.

Of such is the kingdom, the kingdom of heav'n.

Janice Kapp Perry