Thursday, September 24, 2009

Debbie Downer

I hate to be Debbie Downer, but I told myself I would make this blog so I could express how I feel.  This stinks.. not for me, for my poor baby.  I'm just not sure I really understand why my precious man has to suffer so much.  I guess I just have really good days and then every now and then some bad ones.  It kills me every time I have to feed him and he's starving, but he can't suck the bottle.  It's like he looks in my eyes and is thinking, "Why don't you feed me mommy?"  And then when he does smile it breaks my heart more because I know he's hurting and has no idea what it feels like not to have pain... but can still manage to smile at us.  He is just so beautiful.  I don't even see his bandages anymore when I look at him.  I don't see the bo-bo's on his cheeks anymore, or on his ears.  It's just normal to me.  I can't imagine looking at him with his arms and legs showing.. or looking at his little hands and seeing fingernails.  I just can't imagine what is feels like to have raw, bleeding fingers and ears all the time.  Or what is feels like to get new blisters everyday, or to be wrapped up like a mummy all of the time.  I have been praying and asking God to make him comfortable... to take his pain away.  But I guess I am just hoping that God gave him a very high pain tolerance along with this cruel disease.  Now don't take this all the wrong way... I am OKAY.  I totally get that God won't give me anything that I can't handle... I know that, and I can definitely handle this.  But I will have bad days sometimes... and it's not because I can't handle it, it's because I feel for my little man and when he gets sad, I get sad... and when he hurts, I hurt.  But I don't want my mom and Mrs. Pam to take Tripp from me, ha... they've told me before if I get all depressed on them that they're going to take Tripp and run - JOKINGLY of course.  It's just hard to imagine what he goes through unless you see it on a daily basis.  And my God... he couldn't be a better baby (or a more beautiful one)... But when I wonder why God gave him to ME??  I read this over and over.  It is something given to me by my aunt Judy, who can surely sympathize. 

What God Sees When He Delivers a Handicapped Child

Most women become mothers by accident, some by choice, a few by special pressures, and a couple by habit.

This year, over 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, Matthew."  "Forrest, Marjorie, daughter, patron saint, Cecilia."

"Rudledge, Carrie, twins, patron saint, giver her Gerard- he's used to profanity."

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

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

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

"But does she have 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 wear off, she'll handle it."

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

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

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

The angel gasps, "Selfishness!  Is that a virtue?"

God nods, "If she can't separate herself from her child occasionally, she'll never survive.  Yes, here is a woman 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 know it!  When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations.  

"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 day of her life because she is doing my work as surely as she is by my side."

"And what about her patron saint?" asked the angel, pen poised midair. 

God smiles, "A mirror will suffice."

So, isn't that awesome?  That's enough to get me through the day.  That and knowing that my little man needs MORE love, MORE hugs, and MORE smooches than ever!! And I know that I have to be strong for him. 
SOO... on a Positive note... check this precious little man out!! 


  1. Courtney you are a very special Mama. You express so much of how I felt while raising my daughter, Amelia, who had a genetic disease called neurofibromatosis. NF caused benign tumors to grow and intermingle with her nerves. She lived until she was 22 years old when one of the tumors turned into a rapid growing sarcoma in her chest. I prayed for her pain to go away all the time. She had more good days than bad. God sent Tripp to you because you can do it. God Bless You.

  2. I Love You. You amaze me each and everyday! I am so proud of you. Love, your sis

  3. That's a great video... and one of Jonah's favorite games too... Just wait until he starts doing it himself. The cuteness just gets cuter.

    I was going to tell you that we use the Original Desitin (40% zinc oxide) on Jonah's really raw spots (or spots where the skin hasn't come off yet), and it seems to help with healing. I've been doing it a couple weeks and been really impressed. Sorry he's having a rough time right now.

    I'm praying.

  4. Courtney you are amazing and an inspiration too us all...keep strong. Love you lots

    Aunt Sharon

  5. You've come such a long way.Praying for you.

  6. I read this post, just today, and I realized it mirrored so much of what I just wrote to you. You should read this one again :)

    It's true -- God gives special babies to happy Mommy's. God knew what he was doing when he hand picked you, Courtney.

    Sending you my hugs and prayers!

    Katie & Family