Wednesday, August 13, 2008

Breaking the silence

At long last, our computers have been returned to us.  

Even in the absence of my blog posts, we have been overwhelmed and awed by the love and support that have been poured out as we travel this journey with Noah.

Noah remains in the the pediatric intensive care unit on a ventilator.  His MRI on Friday revealed that the damage from the leukodystrophy has extended into his brain stem... an area of the brain that controls involuntary functions like respiration.  This was not entirely unexpected, but the speed with which the disease has spread surprised even our pediatric neurologist, who has been seeing Noah since March.

Noah, while stable, is still a very sick little boy.  

We continue to covet your prayers for wisdom and peace and comfort.

52 comments:

Anonymous said...

You are in our thoughts and prayers.

Lance and Heather said...

Josh and Deb, I am so sorry to hear this. I've been checking the blog everyday for an update and are praying for the three of you like crazy. We just got home after being at children's hospital ourselves and i thought of you guys the whole time...I know you must be exhausted in every possible way. Keep loving on little Noah. I am sure your very presence keeps him fighting!!

Hang in there!
Heather

Jodie Allen said...

oh josh and deb, i've been checking my reader for an update like 50 times a day and i hate that the news wasn't so good. tears come just thinking about what you're going through, my heart just breaks for you guys. we will continue to pray and if it's ok, i would like to add Noah to our prayer list at church.

momma's heart said...

I am so sorry about this latest news you've been given. Your baby and family have captured my heart. You have my full prayer support. Decisions related to his condition are incredibly hard, and I am so sorry you are having to make them. I know you have the Holy Spirit's leading. Feel peace that your decisions are the right ones. God doesn't promise healing, but he does promise a peace that surpasses all understanding. Among other things, I will pray that you feel that peace overwhelmingly.

God Bless You,

Pam

Anonymous said...

I have been checking your blog daily hoping for a "good" update....I am sorry to hear this and will continue to pray for you. Hang in there.

Christine

Anonymous said...

Hey guys, Im like Heather and Jodie...I can't stop checking for updates. I can't believe this! Im so sorry his breathing isn't good. My moms K-Group is praying as well...everyone in St. Louis is praying for you and loves you all so much. I am asking the Lord to keep you going and to feel his peace and understanding in this difficult time. I love you.

xoxox
Kelly Mc

Heather S. said...

My heart breaks for you! I will pray that God will comfort you and give you peace as I'm sure you will be making some very tough decisions.

Anonymous said...

Deb and Josh,

Many times each day I checked your blog wanting Apple to fix those computers fast.

My heart is heavy with the news that Noah's situation has not changed and what information the MRI showed.

My prayers, energy and hugs are being sent to all 3 of you daily.

I thank you for sharing your story and living the example of what true love and devotion is between a husband and wife and of 2 wonderful parents to their little boy.

God and all the angels are with you every moment.....

Lynn

Erin said...

Josh and Deb,
I am a long time lurker-friend of the Mohrs and several others you know from St. Louis. I have been thinking about you and praying for you the past few days, feeling that more was going on than I could imagine. Know that you are in my prayers here and that I will share Noah's story on my blog, as well - spreading the prayers further and deeper as we approach the throne of grace.

May you be at peace.
May your heart be open.
May you come to know the Light that lives within you.
May you be healed.
May you become a source for healing in the world.

And may the God of all comfort sustain you in this time.

The Andersons said...

I am so so sorry, I have been checking constantly. I am praying for your family. I stumbled across your blog months ago, Noah is an amazing little guy!

Jessica

Deb said...

Deb and Josh,
My heart is heavy with the recent news concerning Noah. I have been in the company of others checking your blog daily for news of Noah. I know how you feel and yet I can't imagine what you are going through. Our love, tears and prayers are with you. I pray for God's comfort, wisdom and strength for you both. I want to give you this passage of scripture that I hold on to in times such as this.

But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: "Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior. Isaiah 43:1-3a

Anonymous said...

Our prayers and thoughts are with all of you. The Lord will always show the road you should take.
Take Care.

Sally, Jerry and Liz Cook

Anonymous said...

Josh and Deb-
We are so sorry to hear this news. We are thinking about you constantly and praying for little Noah.
Much love-
Alan, Kate, and Eliza

kim marsh said...

Continuing in steadfast prayer for you 3 and your families. I pray for miracles, if that is God's will. And if not, I pray for peace, courage, and rest for the 3 of you....

Love you, Noah!
"Miss Kim"

Katie Mohr said...

I'm without words. Thankful that your computers are fixed but sad to hear your news. Let us know if there's ANYTHING we can do!

Ron said...

God is good. Even when you can't see it. And I am sure you cannot. I hope there are many around you to lean on. If so ... lean! Hard!

The prayers never cease...
Ron & Debbie from Cleveland

The Wagners said...

Josh and Deb,
Like all the others, we were checking your blog many times each day to see how sweet little Noah was doing. We are saddened by your news. Many prayers are lifted daily; we think of you all of the time. I’m reminded of Isaiah 41:10-Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you and help you, I will uphold you with My righteous right hand. And John 14:27- Peace I leave with you; My peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Much love,
Chris, Michelle, Alex, and Jacob

Brandi Koziatek said...

Still praying Deb and Josh. You and your precious son are heavy on my heart and in my thoughts!

Chris Fix said...

Deb and Josh,
Like so many others, We have been checking your blog several times a day hoping for some news. We are so sorry that the disease has spread so fast. We continue to pray for all of you daily.

John and Chris Fix-
Lexington, VA

Andrea said...

I cannot even begin to imagine how you feel, but your constant faith in the Lord is breathtaking. Keep loving that precious boy and you will all be in my prayers.

The Foxes said...

You all have been on my mind each and every day. Praying that each day you will receive just what you need from the Lord. Loving you three...

Leslie

Matt Ryan said...

Just wanted to y'all to know you're in my prayers:

Watch, O Lord, with those who wake, or watch, or weep tonight, and give your angels charge over those who sleep.

Tend your sick ones, O Lord Christ.
Rest your weary ones.
Bless your dying ones.
Soothe your suffering ones.
Pity your afflicted ones.
Shield your joyous ones.
And for all your love's sake. Amen.

Augustine of Hippo

Tyra said...

Extra prayers are being lifted for your sweet family tonight. I hope you continue to find strength from your faith and from the good wishes and support of others.

-- Tyra Damm (friends of the Locke family)

Anonymous said...

I pray you feel God's grace, that covers each of you. Linda

Anonymous said...

Tears, tears, and more tears. My heart is breaking. Try to stay strong. You all are always on my mind and forever in my prayers. God is watching over you. Miss you.

Kim K.

Becca said...

Deb and Josh - We are so sorry to hear this news. We will continue to pray for you, Noah, and your family.

amy said...

our constant prayers are with you....

Gina Dankel said...

Our hearts are breaking for you. I like many others have been checking the blog daily. I'm so sorry about the latest news. I pray that the doctors will have wisdom in how to help Noah. We love you guys.

abcr123 said...

Although I do not know you personally, I came across your blog. Now I check it faithfully. My heart is heavy. You & your precious little boy remain in my thoughts and prayers!

the Hansels said...

We're praying, and thankful for the fixed computers.

Anonymous said...

Deb and Josh,
My heart is so heavy after reading this. You are constantly in my thoughts and prayers. May God give you strength, comfort and peace. Noah is so blessed to have you for parents. Know that there is much love being sent your way from St. Louis.

Take care of each other,
Kathy

pam j said...

Deb and Josh,
Both of you and precious Noah are in our thoughts, but most importantly we are storming heaven with prayers for you all!
Bob and Pam
kc mo

Dana said...

I was excited to see an update, but heartbroken after reading it. I can't imagine what you are going through, but I know that the Good Lord will carry you through it. I will keep you all in my prayers.

Amanda said...

I have been reading your blog for awhile. I am Russ Mohr's sister...please know that I have passed on your names to different prayer groups that I am a part of.
Praying that God will give you guys peace and rest in this hard time. Praying for Noah and everyone of his care givers.

heresthediehl said...

I know we don't know each other, but I'm a friend of the Swinigans and read Katie Mohr's blog, too, so I came across your blog a while ago.

I'm just so sorry to hear about what you're going through, and continue to pray for little Noah daily.

Nicole

Anonymous said...

While it might not mean much, happy Early 1st B-day Noah Jackson. The last year you have been on earth has been a blessing. More than this will be a miracle, that we all hope for.

Joan Davis said...

So sorry to read about your little angel, Noah. My family and I will definitely be keeping your family in our prayers.

Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Tammy said...

I am praying for you all. May you feel God's arms around you during this difficult time.

Jack said...

"There is no finer investment...than putting milk into babies." -Winston Churchill"

You are doing the absolute most important job God has for you right now...it's so important and so beautiful in Jesus'eyes.

Along with so many others, we are in prayer for your family & Noah.
Emily Murphy

Jan C said...

I have no words to express my sadness at the news you and Josh received. Tears and more tears...and a rereading of parts of The Shack which helped just a little. Just rest in the peace and love God alone can provide; lean on Him and on each other as you love your little boy through this valley. Needless to say, If I can do more than pray.....just point me to what could help in any way.

Fern said...

I'm so sorry, and angry, and will be begging for peace and comfort for all three of you.

Anonymous said...

Josh, Deb, and Noah, You and your family are in our thoughts and prayers. Donica and Will Revere

erin said...

We have been praying and thinking about you constantly. I'm so sorry that the MRI did not bring good news. Love you guys.

Anonymous said...

I'm here in the NICU taking care of a vent baby... my heart cries out to God for Noah, You and Josh. I think about you daily and pray for you often.

Charity

Allyson said...

Deb & Josh--You all have been he first prayer on my heart every morning this week. May God continue to give you that peace that passes understanding as you continue to trust in Him. You are special to God and to us. Much love, Bill & Allyson

Anonymous said...

I am praying for dear Noah.

momma's heart said...

Still praying. There are many, online and in the hospital, who are being deeply touched by your faith. I know it feels awful right now to be "chosen" to be an example of the miracles Christ performs in the hearts of his believers. But he will equip you throughout. You will still love him, worship him, find peace through him, no matter the outcome. You will. There is anger, yes, but he softens that, and then later, that anger completely dissolves. Tell him you are angry, tell him everything! Tell him what you need. Punch at him if you need to. He is your everything!

I am praying for a miracle. But I know that even if God doesn't have that for Josh, he has it in store for your heart. What will occur in your heart will be a miracle. You will still love God with all your heart, soul and mind, and want to tell others about him, even though he has, in a sense, broken your heart, from having to see your precious baby suffer. That is a miracle!

I am so sorry you are having to feel such intense, indescribable pain. I am so sorry!

Susan said...

Deb and Josh - My prayers are for you and Noah your families and the medical team. May you find wisdom, peace and comfort from our FATHER who loves you and feel HIS presence.

Susan L

Susher said...

My prayers are with you (I am Martha Hyland's aunt).

I firmly believe, and I hope you do, to, that while Noah sleeps quietly in that hospital bed there is so much more going on than meets the eye. I have absolutely no doubt that God and Noah speak to each other daily, perhaps endlessly. I believe that while you comfort and soothe his human body, that in ways we can't fully understand Jesus is cradling and loving on his spirit. I know that your little boy is experiencing joy, peace and love beyond our understanding during this difficult time.

The faith you exhibit is humbling and inspiring. Your gentle, trusting spirits in the face of such pain and adversity have caused me, and I'm sure countless others, to reassess our lives and to be grateful for what we have, rather than bitter over what we have not.

I will pray for your continued physical and emotional strengh for this journey you are on, and that you may have that peace which surpasses all understanding.

erin wilkins said...

...praying and praying some more. I wish I could be there to give you a huge hug. I can still remember you speaking the words of Psalm 121 into my heart through high school. I pray those same words comfort you even now.

Anonymous said...

The light of God surrounds you,
The love of God enfolds you,
The power of God protects you,
The presence of God watches over you.
Where ever you are.....God is!!

Anonymous said...

HAPPY BIRTHDAY NOAH

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