Monday, August 22, 2011

Good Times and Hard Times

Please bear with me as I'm not sure where this one is going.  Aaron is doing really, really well.  In fact, so well, that sometimes he gets a little silly.  We went in a week ago to have his casts removed and look at his feet.  Initially, at least, it looks like his feet may be changing.  So we also put new casts on.  Next Monday when we go back, he'll also have x-rays done to see if the bones have shifted at all.  If they have then we'll continue casting.  If not, well, that experiment will be done, and at least we'll have his feet back for sensors.
'Cause this little monkey, he's been having lots of fun with his oxygen sensor.  Me, not so much.  Because we don't have access to feet, we have to put it on his hand.  Use your imagination and you can probably figure out how that's working.  He wiggles and waves his hands a lot.  He likes to pull it off completely.  And, perhaps his favorite, he likes to chew on it.  The sensor works fine when he chews on it.  At least it's holding still and attached, but when it gets wet, it's all over.  No pick-up at all.  So this past week there have been alarms galore going off.  I finally asked Deborah to sit in there with him, because most of the time, they are false alarms, but you can't tell if your in another room.

This week Michael and Andrew chose dinosaur stickers for Aaron's casts.  Daddy also painted messages like "I love Aaron" and "Wonderful little friend" on them.  We even put a turtle on for one of his doctors.  She's really partial to turtles.  Aaron wasn't so sure about taking those casts off.  His eyes were big and scared with the noise and vibrations from the saw.  I just kept talking and smiling at him, and it was almost like, "I'm really, really not sure about this, but you look like things are okay, so I'll hang in there for now.  But you better be sure about this, Mom!"  On his toes are stickers that say "Lengthen Your Stride."  Inspiration more for me than I think for him.  His stride is already pretty impressive.

So really, Aaron has been having a very good time.  As my doctor said last week, "This is obviously NOT failure to thrive."  But several of his little friends, and their families, are really struggling.  Sometimes I have a hard time with the juxtaposition of a seemingly healthy, happy baby, and the knowledge that it can change in an instant.  This past week, one of Aaron's little T18 friends, Peter, grew his angel wings.  Peter's mom founded Prenatal Partners for Life after Peter was born.  She sent Aaron a lamb with "Child of God" printed on it.  This lamb has been to almost every one of Aaron's hospital admits.  It is in his bed here at home.  He loves to grab at it.  Mary has been so helpful to so many of us as we've traveled this road.  

Another special baby, Caleb, is 29 months.  Caleb's mom, Jeannette, has been right there with me since Aaron's birth.  She has been wonderful to provide advice and a listening ear.  She is a woman with a profound faith in our Savior.  Last Thursday, Caleb went in for an adnoidectomy because his were so large they were making it hard to breathe.  After surgery, he had a heart attack.  Today, he had another.  My heart aches for them.  Please, if you will take a minute, please pray for these families.  They need the strength and peace that comes from prayers offered.  They need it now, and will for quite some time in the future.  I long to uphold them as they have held me.  I wish I was close enough to put my arms around them. 

So as I count my blessings, and I have so many of them, I also plead for understanding from my Father.  Because, most of the time, I don't understand, or maybe I don't want to have to understand.  We love our little ones so much.  It hurts so bad to watch them suffer, but even more to lose them.  If not for the knowledge that this life is a school and not the end of everything, I think I would truly lose my mind.  It is only with my faith in my Savior and my Heavenly Father that I can find the strength to not only go forward, but enjoy the journey.  I am so glad he has entrusted us with one of his special angels.  I once read (and haven't been able to find the source again!) about a family similarly blessed.  A neighbor remarked to the father that "We have heard of the ministering of angels.  It would be interesting to know why your family has been chosen to minister to one of them."  These babies truly are special angels and, as hard as it is to watch them suffer, those who are allowed to love and care for them are among the most blessed I know.


  1. Well written, I would actually say to the comment from your neighbor

    "We have heard of the ministering of angels. It would be interesting to know why your family has been chosen to minister to one of them."

    I would actually say, Your child Aaron is ministering to us and everyone who meets him. Each and every person who meets your child is moved to check and recheck their own values, beliefs and virtues. You see, we are gifted with these special souls for the powerful mission of love they can offer. God in his infinite wisdom not only knew we could handle this, but with great love also give us many Graces for the Journey. We just have to be open to carry the cross on those most difficut days. And thankfully the JOY outweighs the sorrow... One of my favorite poems is this one... it talks about being a bit selfish... and thats ok.. we also need that from time to time. To be ourselves, as we love and care for our Angels.

    A meeting was held quite far from Earth!
    It's time again for another birth.
    Said the Angels to the LORD above,
    This Special Child will need much love.

    His progress may be very slow,
    Accomplishments he may not show.
    And he'll require extra care
    From the folks he meets down there.

    He may not run or laugh or play,
    His thoughts may seem quite far away,
    In many ways he won't adapt,
    And he'll be known as handicapped.

    So let's be careful where he's sent,
    We want his life to be content.
    Please LORD, find the parents who
    Will do a special job for you.

    They will not realize right away
    The leading role they're asked to play,
    But with this child sent from above
    Comes stronger faith and richer love.

    And soon they'll know the privilege given
    In caring for their gift from Heaven.
    Their precious charge, so meek and mild,

    By John & Edna Massimilla

  2. Oh here is the one with the phrase about being a bit selfish.. :).. Its nice too, by the funny lady: Erma Bombeck
    The Special Mother
    by Erma Bombeck

    Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

    Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

    "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

    "Forrest, Marjorie; daughter. Patron saint, Cecelia."

    "Rutledge, Carrie; twins. Patron saint Matthew."

    "Finally He passes a name to an angel and smiles, "Give her a handicapped child."

    The angel is curious. "Why this one God? She's so happy."

    "Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

    "But has she patience?" asks the angel.

    "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

    "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

    "But, Lord, I don't thing she even believes in you."

    God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

    The angel gasps - "Selfishness? Is that a virtue?"

    God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

    "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is
    doing My work as surely as she is here by My side."

    "And what about her Patron saint?" asks the angel, his pen poised in mid-air.

    God smiles, "A mirror will suffice."