Kristi and I are so touched by what we are hearing about in Texas and Baltimore. We had no idea how big this has gotten until we got to Baltimore and couldn't watch TV without seeing our beautiful little girl on the screen. We are deeply moved by Maryland adopting us as a family.
At the same time, we are humbled to hear that our friends, church, and community, back home, are expressing their faith in God so openly and coming to our house to pray for Jessie, and wearing their pink bracelets. This is God's time and I know that He is so pleased with all of you. We beam when we talk about our amazing community. We are so proud of you.
And your comments are incredibly heart warming. We honestly cannot read your comments without crying. Thank You for taking the time to post. We read each one.
Jessie had a wonderful day today!! We found a cute little diner way east of the Johns Hopkins, and we had lunch and dinner there. They have incredible chocolate shakes...the old fountain kind made with real ice cream. Jessie had two tonight with her dinner.
She told us many times today what a marvelous vacation that she was having in Baltimore. We let her do whatever she wanted and spoiled her at every chance. Her grandparents arrived today and they spoiled her even more. She laughed all day. Evey thing was funny to her and she kept our spirits up. She is more alive today than I have ever seen her. Her spirit is what is going to get her through this.
Jessie's sleeping soundly now, with visions of chocolate shakes, laughter, fun, and parents that don't say "no". I'll never forget this day.
We have to be at the hospital at 6:00AM tomorrow morning and surgery begins at 7:30AM. Please know that Jessie has GREAT medical care up here, and with your prayers, we are going to witness a miracle tomorrow. Jessie will be fine.
God Blessings to all of you.
Kristi and Cris
About Me
- Jessie
Mail: Jessie Hall
c/o The Hemispherectomy Foundation
P.O.Box 1239
Aledo, TX 76008
Jessie is 8 years-old and in 2nd Grade. She has 3 brothers, Matt(12), Jake(10) and Josh(10). She loves people, and never met a stranger. She loves to laugh and sing and play. Jessie was diagnosed with Rasmussen's Encephalitis(RE), which is a rare brain disease that usually attacks healthy children about her age. The only known treatment for this cruel disease is a hemispherectomy (surgical removal of one-half of the brain) This is an account of Jessie's confrontation with RE and her families attempts to navigate through a new world to bring her the best care possible. Surgery was on June 11, 2008. This Blog is an attempt to help people undertand this disease and surgery, and to help others with kids going through it to find comfort and resource from someone who has been there before. Read from bottom, up. It will be updated continuously through Jessie's Miraculous Recovery.
**To add Comments, just click "Comments".Or, email Jessie at Jessie@Hallzoo.com.
14 comments:
Dear Cris and Kristi,
I was just reading your blog, and this old hymn came to mind. We are continuing to pray in agreement and stand on God's word for your peace.
Love, Lee Ann
Hymn: It is well with my soul
When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
For the history and deeper meaning of this hymn visit:
http://www.biblestudycharts.com/A_Daily_Hymn.html
Philippians 4:6-8
6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
8Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
Psalm 46:1-3 God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be
removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and
be troubled, though the mountains shake with the swelling thereof. Selah.
Psalm 103: 1-6 Bless the LORD, O my soul: and all that is within me, bless his holy name. Bless the LORD, O my soul, and
forget not all his benefits: Who forgiveth all thine iniquities; who healeth all thy diseases; Who redeemeth thy life
from destruction; who crowneth thee with lovingkindness and tender mercies; Who satisfieth thy mouth with
good things; so that thy youth is renewed like the eagle's. The LORD executeth righteousness and judgment for
all that are oppressed.
Philippians 4:4-7 Rejoice in the Lord alway: and again I say, Rejoice. Let your moderation be known unto all men. The Lord is at
hand. Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be
made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and
minds through Christ Jesus.
John 14:27 Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be
troubled, neither let it be afraid.
Just wanted you to know that your story has reached NM via Yahoo, and that I'm praying for you guys today.
God has used, and will continue to use, your story in mighty ways. Thanks for having the courage to share it openly.
God Bless, and may there be many more "chocolate-shake" days!
Dear Cris, Kristi and Jessie,
I was just watching the morning news here in Baltimore and saw that Jessie's surgery was today. You are definately in our prayers! God be with you and give you the strength that you will most definately need! I'll be thinking about Jessie! God Bless You!
Hey guys! I just read your post...I am so glad that you had such a good day yesterday and the chocolate shakes sound amazing. Jessie is going to experience many miracles in her life...today is the beginning. I will be praying for you throughout the day today. Jessie is a huge inspiration. Take care. I will be watching for updates on the wjz website throughout the day. May God comfort you today and give you strength and peace.
Praying for you guys down here in Texas.....
Kristin Egli
You are all in our prayers as always. Jessie is a true ambassador! We love you!
Eddie, Tina and Lucy
May God bless and keep Jessie, today and always! Our prayers and thoughts will be with you!
Powell, Ohio
Hi Krisit and Cris,
Kelley was looking for scripture to use for her prayer time last night and beaming she shared with me her discovery."But you are a shield arond me O Lord; you bestow glory upon me and lift up my head." Psalm 3:3. Lord, be a shield around Jessie and her family, fill them her medical staff with your glory as we lift her head to you. Amen! On our knees in the UK-love,maura
What a wonderful day you gave Jessie and equally wonderful that it is a day you will also "always remember". God gives us the days to celebrate life in Him and in the midst of your concerns you are doing that! May God continue to hold you all in His precious hands.
Also saw you last night on Channel 11 and am so proud to say how right you are that everyone "within a 10 mile radius" of your house will be praying today. And apparently right on your front yard too. Count us in!
God Bless Jessie and all of her family and care givers.
Hi I am over in Iraq and just found out about this blog and it broke my heart. I am from Baltimore myself and know that your little girl will be fine as JH is a great hospital as my mother had a major operation there. Your little girl sounds like a fighter. I am thinking about her and my prayers are with her and your family.
The Brave Little Soul
by John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”
God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”
Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
I have been hesitating coming here as it is bittersweet for us. We are so joyful that Jessie is able to receive treatment for this horrible disease. What a blessing that is!! We are so fortunate to have a place like JHU here in Baltimore. (Welcome to Baltimore, by the way :-), it's a wonderful place in relation to healthcare facilities.) We have some of the best here.
I have to say that watching WJZ news everyday (as I always have) has been so bittersweet lately. As I rejoice in your Jessie's healing and treatment, I long for the day that the disease my own son Jessse has, will one day have a cure. Don't get me wrong, I am happy he is still with us, and he can still smile and respond similar as a 1 - 2yr old might do. We have watched him regress through the years from nearly normal to this stage now. He is 13 yrs old and lived longer than I was told originally. I praise God for that everyday!
Hearing your Jessie's name everday and the newscasts really bring joy, yet bring a longing as well. I pray that your Jessie recovers 100% and has a happy and long full life! Actully in my heart I know she will. Her spirit is strong and it seems your family is strong in Faith! That in itself makes for a wonderful life! We are 15 minutes from JHU. If you would like to learn a little about our Jesse, check our website. It is uplifting mostly, we do not dwell on the tough times, we rejoice in what God is doing everyday. http://www.caringbridge.org/md/myjesse
He has what is called Sanfilippo Syndrome Type A (or MPS III A)
I am sure you have plenty of tour guides and help while here in Baltimore, but I am available on Saturday if you need or want anyone to show you around or sit and chat and share good times!
In Christs Love,
Patty - mom to Jesse
Baltimore, MD
Dear Kristi & Cris,
Warmest Hello's to you!! You all are surely troopers in the Faith! Sometimes we wonder within do we have enough faith to trust the Lord.
Then when we entrust either our own bodies or the bodies of our children by giving them over into the hands of the Lord. We find that He the Lord is great and greatly to be praised.
When we pray for "His Peace" along with our family members praying,our neighbors praying, our church family & everyone holding us before the very throne of the Lord. It is then we begin to feel the real peace of the Lord come fully into our lives in the most unique way.
Dr. Carson operated on my spine back in 2000, it ear-marked my 25th surgery since my infantsy of being 10 days old.
I had such a peace within as the morning before sunrise, Dr. Ben Carson came into my room, dressed in Surgery Greens. His first words was "Good morning John, are you ready to PRAY?" I said "Yes Dr. Carson I am". Then he said "Ok, then let's PRAY!" When he prayed for the Lord to bless this time, bless his hands and guide him in wisdom in how to operate on my spine. He prayed for peace and guidence and gave all the Glory to the Lord in Jesus Name.
I was ready beyond belief and actually looking forward to going into surgery and not afraid to wake up with another degree of paralysis, if it would have been so, I was ready to accept it.
But the Lord through Dr. Carson spared me from that event. He was able to do some repairs and clean up some old surgery scars within.
Kristi & Cris, I am so happy for the both of you and your precious daughter Jessie, she will re-bound beyond belief through the power of everyone's prayers and faith for her to accomplish so much in her days ahead.
The scripture says... Psalms 71:5 "For you are my hope, O Sovereign LORD, you are my trust since my youth."
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passes all understanding, shall keep your hearts and minds through Christ Jesus. Philippians 4:6,7.
Guard your hearts from those who speak negatives, keep your trust inter-twined with what God says, and not man!
The Lord Bless both you Kristi & Cris and your precious Jessie! The prayers of those who love the Lord avail much!
Love to you all!
John Little
Orlando, Florida
Wow this story is really touching. I have never meet someone as brave as your little girl. She is helpinq alot of other kids that are qoinq throuqh the same thinq. I wish there was somethinq i could do to help. But i know qod is watchinq over her. im prayinq for you <3
What a beautiful little girl you have - I bet she brings such joy to your lives. I cry every time I see her on the news. When my son asks me to take him for a milkshake at Hardy's I am not saying no this time. May god bless Jessie with a quick recovery.
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