Wednesday, May 1, 2013

There Can Be Miracles, When You Believe

Just over three years ago, we were told that our unborn baby would not, could not live.  I cannot describe the anguish we felt.  Words cannot express the emotion, it has to be felt.  Our hope was so frail, so fragile, but it was there, and we clung to it with all our strength.

Now, if faith and prayer were all it took for little ones like Aaron to live, the statistics would be reversed.  We would have a 90-95% survival rate, instead of a 5-10%.  It takes so much more as well.  However, along with the medical expertise, faith and prayer have been critical.

But sometimes, sometimes my faith waivers.  Remember, we've "known" for over three years now that he wasn't supposed to be able to live, and if he did, his life would likely be short.  And we don't know what "short" means.  Last night, I was struggling.  We really haven't made much progress on his oxygen needs since being admitted 12 days ago.  I mean, we've touched four liters of oxygen a couple of times, but not for more than a few hours.  And we've had rides the other way too, most notably 12 liters, and that lasted much longer than any of our four liter experiences.  And again yesterday, he touched four and a half a couple of times, but spent more time on six than five liters.  It's experiences like this, where we just can't seem to help him get back to a safe, stable baseline, that cause this mama's thoughts to go places no mother's thoughts should ever have to go.

So last night was difficult emotionally for me.  I reached out to my other special needs moms.  I knew they would really "get it," because they've had those thoughts, those experiences, and unfortunately, too many of them have also seen those fears become their reality.  I knew they would be there, and they were with many prayers, good wishes, and encouragement to keep my hopes up.  And because of this similar path we've walked, they know exactly what it takes to keep that faith and hope.

In addition, my thoughts returned to a book I read many, many years ago, One Tattered Angel.  Little Charity Yorgason was born with a brain stem but no other brain material.  She also wasn't supposed to be able to live long.  But she did live for eight years, and blessed her family and those around her immensely.  As he tells her story, her father relates that she was spiritually gifted, and he often found that when he needed to communicate with her, when he needed her to understand something, he would do so by praying.

Last night, I took this approach.  As I prayed, I plead with my Heavenly Father that He would open and relax Aaron's blood vessels in his lungs, that Aaron would understand the need to do this, and that he would be able to cooperate.  I expressed my gratitude for Aaron, for all that we get to experience with him, and that while I knew it wasn't my decision to make, if it was okay, I really wanted to keep him around, that I just wasn't done having him here with us.  I don't know that I ever will be ready to let him go, but I really felt that we needed him to regain his strength and be able to come home and be safe and happy at home.

I went to bed still troubled.  Aaron stayed up and played, and it was good through the night to hear him happy and playing, but I was still struggling.  About 5:00 this morning, the nurse was in and I asked where he was.  Still on six liters.  Not very encouraged, I tried to go back to sleep.

About 7:30, I woke again and it was lighter in the room.  I peered over at the oxygen flow meter, and it was down, a lot!  It was still a bit dark, and Aaron was sound asleep so I didn't want to turn a light on.  I tried to count the hash marks at the bottom to see how much he was actually on.  It looked like three liters.  Three liters!  Our goal for starting our 24 hour watch period.  I went out and asked if that's truly what he was on, and was told no, she thought it was TWO liters.  The nurse brought the flashlight in and yes, two liters, not three.

Since then, he's had a little bump up to four for a little while, but those are okay.  That's why we need to be at three or less so we have wiggle room for the bumps.  He got woke up by his breathing therapy and had a hard time settling back down, so he's now on three liters.  Yes, even after not wanting to settle down and needing more oxygen, he's still down where he needs to be for our countdown.  And frankly, we haven't seen this since before he got sick, even when we were still at home.

So our countdown clock is ticking.  If all goes well today, we'll head home tomorrow morning.  If not, well, if we hit another speed bump, I'll keep in mind that it's a speed bump, not a brick wall.  And we'll keep trying.

Several years ago, my sister made a CD with songs and lullabies for her nieces and nephews (she didn't have children yet).  We call it, "Love, Aunt Maurie."  One song, the one my mind went to and clung to when we got Aaron's diagnosis was "When you Believe" from The Prince of Egypt.  Last night and this morning, I found it playing over and over in my head.  It's on a link at the bottom of the screen.  She does a beautiful job.  I hope you enjoy it.

Many Nights We've Prayed, With No Proof Anyone Could Hear
In Our Hearts A Hopeful Song We Barely Understood
Now We Are Not Afraid, Although We Know There's Much To Fear
We Were Moving Mountains Long Before We Knew We Could

There Can Be Miracles When You Believe
Though Hope Is Frail, It's Hard To Kill
Who Knows What Miracles You Can Acheive
When You Believe Somehow You Will
You Will When You Believe

In This Time Of Fear When Prayers So Often Proved In Vain
Hope Seemed Like The Summer Birds Too Swiftly Flown Away
Yet Now I'm Standing Here With Heart So Full I Can't Explain
Seeking Faith And Speaking Words I Never Thought I'd Say

There Can Be Miracles When You Believe
Though Hope Is Frail, It's Hard To Kill
Who Knows What Miracles You Can Achieve
When You Believe, Somehow You Will
You Will When You Believe


  1. I think you know that I'm not religious. Nonetheless, your post had me in tears. I deeply understand. I'm so relieved at his progress. Sending you so much love. Xoxo