Not flesh of my flesh, nor bone of my bone; but, still miraculously, my own.
Never forget, for a single minute you didn't grow under my heart, but in it.

Saturday, July 10, 2010

So total change. Not stopping antibiotic and not going home Monday. He is running fever again and tartly on chest so more cultures and xrays and antibiotics! Hevis too fragile Amd they want to know if Floyd is building back up and what kind I infection now!!
I saw this for the first time tonight! Itncpukd have been written by my Jeremiah!! there are ao many verses that could be added such as about sight which is thE area of Jeremiah's lifebi feel most overwhelmed about! Anyway here it is:

This helps me feel better when I'm in a funk:


I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development tha...t you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

- Author Unknown -

Friday, July 9, 2010

Day 26 in the hospital! Thanking God every day thar Jeremiah is alive!!! Henie running fever again but only low grade so we are watching that! Please pray Jeroah will take the bottle better today when he gets his daytime feeds! yesterday was rough rough!! Also please pray I can learn ways to stimulate and play with him!!

Wednesday, July 7, 2010

Wonderful gift from our friends the krasinskis (William and Judy's ) family in PA!!! Such a blessing

Tuesday, July 6, 2010

Bye bye PICU , Hello PEDS!!! We are in peds!!! Room 515!!
Dr. Eddlemans exact words "I think we are nearing the end of this" and the nurse said " you are going back upstairs today"!!! So looks like if all gies well we are graduating from PICU back to peds!!!!

Sunday, July 4, 2010

And I thought I knew what hard was...

I thought 14 and half months of fundraising was hard! Especially so soon after 10 and half months of fundraising for Noah! But I now know those times were so easy in comparison to this time in our life. We are on day 21 of the hospital and day 18 of PICU with my sweet frogie boy! Coming straight home from Taiwan and watching your new son fight for his life over and over, now THAT is hard!!! I don't think anyone envisions this happening and I have been through so many emotions and thoughts of what did I do to make this happen, did something happen on planes. Why why why! The docs say this sepsis and pneumonia were underlying for awhile but why didn't it show up and thank God it didn't happen on plane or right before we arrived and keep us from getting him! All along  during the journey and wait I kept saying I pray we learned what God had for us to learn in the waiting and now I say the same thing! Let me learn Lord! There is so much about this that is hard, watching doctors and Nurses literally run around scared
for your baby's life, watching the vitals crash, choosing between your critically ill new baby and your 3 year old whose whole world has changed and now he can't be with mommy every minute. It tore my heart in two having to leave Noah in the waiting room to be in here with Jeremiah and again having to leave Jeremiah at night with Bobby to go to a screaming  Noah in the waiting room!  Watching my daughter try to help Noah be ok without me and how hard that is for her and now watching her upset that Noah now prefers her to me and will cry for her. It kills her and me and Bobby cuz he wants Noah to want him. There is so much more I could share but you understand I think! A few have said they feel so sorry for me that I am going through this and that after all we went through to get Jeremiah we might loose him. Don't feel sorry for us!! One hour with that amazing baby made every second of it all worth it! He so blesses us! God gave me this amazing baby boy and no matter how hard this time is it's all about him and what he needs!! Even if the doctors are right and he is as bad as they think he soo deserve to know the Love of a family and to experiece as much of life as he can! I am doubting this post is making since and I am not sure why I am writing other than it's been a hard day, while asleep last night the night nurse changed Jeremiah's gown and didn't keep his paci and paci holder! The very first one is now gone! I have cried my eyes out all day and so has Jeremiah because he became very attachd to it all this time docs won't let him eat a bottle! I have been more emotional today since that happened! I don't know why this happened to Jeremiah and why he has not been able to be at home and experience family, his swing, start all his therapies ect. But I know that God had mercy and saved his life! Every time I think my baby had 500 times the normal Procalcitonin of sepsis and people die with regular sepsis I am more amazed at the power of God!!!! The doctors have said it is a miracle he lived to get to 
America and that he lived through this battle! We are still in icu but he is doing amazing!! Please forgive any comfusion In this as I am exhausted! 

To God be the glory, great things HE has done!!!!!!!! Sending this by the blessing of my phone!!
THE WAIT FOR NOAH IS OVER!!!! November 3, 2007~September 8, 2008 First heard about Noah~Noah in our Arms!
April 1, 2009~ June 7, 2010 First committed to Jeremiah~Jeremiah in our Arms!

The FIRST Picture we EVER saw!

The FIRST Picture we EVER saw!
Noah WesLee 5 months old

The First Picture we ever saw of:

The First Picture  we ever saw of:
Jeremiah Harold Sisemore ~1 year

Kisses in the Wind

I hold you in my heart and touch you in my dreams.
You are here each day with me, at least that's how it seems.

I know you wonder where we are... what's taking us so long.
But remember child, I love you so and God will keep you strong.

Now go outside and feel the breeze and let it touch your skin...Because tonight, just as always, I blow you kisses in the wind.

May God hold you in His hand until I can be with you.
I promise you, my darling, I'm doing all that I can do.

Very soon, you'll have a family for real, not just pretend.But for tonight, just as always, I blow you kisses in the wind.

May God wrap you in His arms and hold you very tight.
And let the angels bring the kisses that I sent to you each night.

When Love Takes You In!