Kyle's NICU Story in Pictures

Friday, February 22, 2008

thoughts, thoughts, more thoughts...

I have them all the time.  finding time to sit down and put them to paper seems impossible.  But I know one day I will so want to be able to look back and remember the moment.  I know I will remember the experience but I want to know it and for kyle to know it in the moment it was lived.  so I'm still struggling to find time and energy to do it.

today i got a comment.  one that made me gulp in horror as I read about the baby's brain bleeds but one that helped me remember what we need to be to each other.  I had a doc visit with kyle yesterday - great news - his eyes are still perfect!  so perfect she is "shocked".  and wants to see him in one month just to be sure!!!  she couldn't believe it.  but she did mention a concern neurologically.  this is the stuff that gets me.  so my day of joy took a turn to a day of anxiety, stress, reflux or an ulcer I don't have a clue but it is ridiculous the way my body is responding to fear and stress these days.  so then came the fight -the fight to rely on god.  oh and I can't tell you how many disabled and mentally retarded people and kids! that i ran into during my doctor's visit.  makes the fight that much harder for me.   the fight against fear that is.  anyway - so I talked with God much yesterday and fought to stay focused on his promises to me.

that comes the hard part - I questions the promises.  I think it is that underneath whisper my friend told me about.  the whisper of the enemy.  i can't even get one doc visit with all good news - b/c what i want is a doctor to assure me and what my God wants is for me to rely on him only.  hmmmm...  I NEVER thought it would be this hard.  

my mother in law said to me the other day that I only need the faith of a mustard seed and I replied back "it's a good thing b/c that is probably all I can come up with."  and as I think I have been realizing what i think that statement means.  not that we can skate around half way believing but when we are so desperate so scared so sitting in humility with no one else to grasp our faith from - we can turn to God with the little bit we have left and it will still be enough.

This makes me say - our God is good.

oh - back to the comment I got today - a young girl - a young mom - too afraid to visit her 26 weeker twins - both are bleeding in the brain.  I want to take your sweet face in my hands young mom and say to you  - what little you have left in your spirit - it is enough.  fight for your babies fight for their spirit and yours.  Our God is good.  you are not abandoned.  even though you can not take in what I am saying it is truth.  I am just a few steps ahead of your life and looking back and still looking forward - I understand - my spirit hurts and groans for you.  I will intercede.

I have lots of thoughts to share about kyle coming home.   I am thrilled, excited, challenged, overwhelmed with joy - so happy to be mom to all three of my boys.  sitting in the rocking chair with kyle listening to jadon and jack in the back yard.  it doesn't get any better than that!

but it seems in an instant or in a word from a doctor - all of it turns to fear and churning.  for several days I couldn't remember why I was so upset - I was living in my bliss and praising God for my sons.  I want to be back there.  the only think I know to do is fight and allow you ( you know who you are) to fight for me.  please.

another doc appointment today - cardiology!  we will see how this goes and when I can start sleeping, tear myself away from candy land, legos and bike riding in the cul de sac - I will begin recording my thoughts again.

first:  two questions - anyone that commented earlier on our medicaid blog stuff - I need to ask you some questions.  We are having a very hard time getting medicaid to cover kyle - we did hear from lots that his docs would be covered but we are having a hard time making them do it - lots of forms that don't seem to be working so for real - will you email me if you know about this.  also- we have LOTS of visits and therapies coming up - I would love input on physical therapists - I will be interview some soon.  my email is

please keep praying for Kyle - our road is at an amazing place - I am realizing what a miracle kyle is.  I have a 6 pound (yes - I said 6!) 4 month old.  and he is at home with me!  on only one medicine that ends March 4th.  this is a miracle.  He is a courageous lion - and will be a king!

please keep praying for God to restore his mind to perfection!


Anonymous said...

P. Seale

shauna maness said...

wow kel, i really needed those words. thanks for speaking life into me... i really am a mess!! i almost balled reading every word... dude, what is my deal? (people reading this probably think i'm a jerk, but you get it... :) hormones... why do we have them???? love you. i feel like i just had a therapy session. for real.

Anonymous said...

We are so joyous to see that Kyle is enjoying home life and thriving. We pray everyday that God will bless Kyle with a strong mind, body and spirit. May the Lord also bless each of you with the gift of peace, courage and strength in your daily lives.

Myron & Christina Arnaud

Anonymous said...

I have only left you a message once before. But I would have you know I have been with you through it all, on your site every day, praying, interceding for Kyle. I have loved with you, laughed, and cried with you, and I believe God for you. God is healing Kyle. I have never met your family, but if I saw you I would know you and embrace you as friends.

Tabaitha Kaye said...

Kelly, I appreciate your honesty in all of this. Obviously it isn't easy doing everything you do. Keep holding onto that mustard seed of faith, we are praying for all of you. 6lbs, that is fabulous!

Anonymous said...

thanks for the update! I miss them but also realize you are a mother of 3 children who is so busy! Ha ha. Remember back in the day when you can take a warm shower...w/ no visitors!
I am still praying - Kyle is a miracle! :)You make me realize how wonderful every day is! Love ya guys!

Carol said...

In the early days, I used to email you what I was praying. I thought it would be helpful to know not only THAT someone was praying for you personally, but WHAT they were praying for you. I haven't emailed my prayers to you in a while, but I wanted to know what I prayed for you yesterday while you were at the doctor.

I asked God to help you remember this promise from His Word:

Now I know that the LORD saves his anointed; he answers him from his holy heaven with the saving power of his right hand. Some trust in chariots and some in horses, but we trust in the name of the LORD our God. They are brought to their knees and fall, but we rise up and stand firm. (Ps. 20:6-8)

While some can only trust in doctors and tests and MRI's, we can trust, even when all we have left in us is the ability to trust his name, we can trust simply in his name. It will be enough.

Anonymous said...

One day at a time. Do what you can. Rest every chance you get. Make time to rest. Make yourselves relax and enjoy - whatever it might be. You'll never get a minute back once it's gone. So savor & enjoy...
I will be praying for peace & good sound rest to come to all of you.
Love you all !
GranMammy B
Barbie Weller - Mansfield

just me... whoever I am said...

Kelly, your post was so honest and raw- it brought to my eyes and I don't even know you!

With Kyle your son, you needn't worry. The mountains he's already crossed have been insurmountable journeys for others, and he has overcome them with such great strength and purpose; there may be rough patches in his road ahead, but I truly believe that there is nothing he can't overcome! He has already proven what a warrior spirit he has in his heart.

With that spirit, the love of his family, friends and the purpose that God has in store for him... he will not stumble...never fear!

I have kept up with Kyle through Shauna's blog and have rejoiced at his triumphs and the amazing outpouring of love and support for all of you!

Congratulations on your amazing son-

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!