On July 13th at 10:39, we had a beautiful baby boy named Jameson Todd Setsma. He was greeted with excitement and joy. He has just a little hair and round cheeks. (The cutest little guy ever) He weighed 6 lbs. and 13 oz. ,and was 19 inches long.
Soon after his birth, we were told that Jameson had a rare skin disease called epidermolysis bullosa. This is a genetic condition that affects 1 and 50,000 children. We were in total shock and completely blind sided by the diagnosis. I still think, that we will wake up and this will all be a very bad dream. Well, it is not a dream it is our life. This definitely caught us off guard but it did not surprise our Lord and Savior.
There have been many ups and downs throughout this week. The "ups" are the love that our friends and family have shown to us during this most difficult time. The "downs" are many....too many to speak of but never more than we can handle. Jesus has held our hand and bottled our many tears. His presence has been felt and his grace is enough to get us through second by second. We do not understand any of this, and we have asked why us..... His answer has been to glorify HIS name.
We ask that you pray for Jameson's health while in the hospital (keep him safe from germs and infection), Jameson's pain to be minimal, nurses to come to know Jesus (as we always sing Jesus loves me to him while his dressing are being changed), wisdom in finding a specialist, and that Nicholas and Zachary do not feel the burden that we are carrying.
James 1:3-5 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him".
We will update again real soon.
We love you,
Todd and Melisa
Help! This dogs getting me.
16 comments:
Good morning,
Boys are well, excited about another day at basketball camp. I will post some pics later of them all playing. It is a joy to watch. Praying for Jameson. Praying for You.
Mark
Nicholas had a great time with us this weekend at the beach. I needed his help keeping the girls in line. Ask him about his gogles when he gets home. Hopefully he still has them. Continually lifting you up for Strength and Healing.
Jay
You guys are a great example to my daughters. Thank you for living your faith not only during the good times, but also the tough times. We are praying for you.
Todd, we missed you yesterday. Joe was on FIRE. I did not play so well; though, I did catch a bass (with Joe's help) off of the 7th tee on the New Course.
Charlie
Todd and Melisa,
Curt and I met you at Pebble Beach last year and just heard about little Jameson. You and your precious gift from the Lord are in our prayers.
Rene
Todd and Melisa,
We want you to know that you and your family are heavy on our hearts at this time. I am so glad to see pictures of your beautiful new son. We are sending lots of hugs and we are praying for God's favor for little Jameson. Our Lord is Jehovah Raphe--The Great Healer. We love you guys!
Dave and Krystal
TODD & MELISA,
OUR DEAR SWEET CHILDREN, HOW WE LOVE YOU AND OUR NEW BEAUTIFUL JAMISON. WHAT A WONDERFUL EXAMPLE OF GOD'S STRENGTH YOU HAVE BEEN TO US. YOU SHOW IN EVERY WAY THAT GOD GIVES STRENGHT IN THE MOMENT OF NEED.PLEASE KNOW THAT A MULTITUDE OF PRAYERS ARE REACHING OUR GOD OF GRACE AND MERCY AND WILL NOT COME AWAY VOID. WE ARE PRAYING CONTINUOUSLY FOR THE HEALING TOUCH OF JESUS UPON OUR PRECIOUS BABY JAMISON. WE LOVE YOU AND WE ARE ONLY A PHONE CALL AWAY.
LOVE & HUGS,
MOM (MIMI FAYE)
PS. 20
Todd and Melisa, over the years this music score has sat on my desk or dresser. It is the most beautiful verse I have ever heard regarding God's care for us.
Normally I focus on the music - this verse always makes me focus on the thought.
"He giveth more grace when the burden grows greater, He sendeth more strength when the labors increase, To added affliction He added his mercy,
To multiplied trials His multiplied peace.
When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources,
Our Father's full giving is only begun.
His love has no limit, His grace has no measure,
His power has no boundary known unto men,
For out of His infinite riches in Jesus
He giveth and giveth and giveth again!!!!!"
We Love You all deeply and will continue to pray without stopping.
hey guys! went to LU with you both. kevin huffman posted the link to here on his status on facebook, which is how i found this blog. anyway, first, want to let you know that jameson and you all are in my prayers.
second, are you in contact with the DebRA organization? they have a really great network to help families that have a child with EB. i don't know what products the doctors have given you but the mepilex, mepitel and normlgel products are known to be very gentle and have been endorsed by DebRA.
i hope that helps. let me know if i can help in any way.
-jaymi rosano
Dear Todd and Melissa,
I was so saddened to hear about all the heartache surrounding the JT's health-- there is nothing more awful as a parent, than to see your child suffer and not be able to ease their pain. It took me a long time to realize, but the Lord looks at you with the same love and compassion as you look at Jameson. He wants to heal the wounds on our hearts more than you want to heal Jameson's wounds-- which is beyond human understanding. I grieve for you as you grapple to understand all that you have been given-- how dreams change and hearts seem to be broken again and again. There are no words at time like these- and on days when even prayers seem impossible I would encourage you to just be still and let the grace of the Lord cover you. This time will be a time of unimaginable hurt and disbelief- but will also be a time where you will see the Lord working in ways that you have never experienced or imagined. You will see him tangibly meeting your needs, picking you up and giving you strength that is not your own. There will be so many times that you would give anything to pick JT up and just hold him, to stroke him, and to press his face against yours-- it is these moments that I will be on my knees about... that the Lord would impress your Love on Jameson and the physical hugs that you long to give him can be given to your other boys until the time comes when you can hold him like you so desire. I am so, so sorry that you have to endure such suffering-- I pray that you will continue to seek the Lord during these dark days-- and that His mercy and grace will cover your entire family. I'm praying for miracles.
Love,
Jill Herweyer
Todd & Melisa ~ We havent't seen you guys for awhile but I read about little Jameson on the Mustaine's blog, and talked to Mark for a few minutes at basketball camp yesterday. I just wanted to let you know the Ward Family is praying for Jameson's healing and for your strength. I cannot even begin to imagine the emotions you all are experiencing during this difficult time, but your strong faith is evident and is an inspiration. May the Lord wrap you tightly in his love.
Colton has had fun seeing Nicholas & Zachary at basketball camp this week. He is praying for Jameson, too!
Suzanne Ward
Dear Todd,Melisa, and "The Boys",
Congrats on the new baby. He's a beautiful baby and has touched our hearts in a special way. I can't begin to know what you're going
through. I know the Lord knows, He feels your pain and knows your fears. He will see you through this. He loves us more than we can possibly imagine. It is hard to imagine that anyone could love our children more than we do as parents. I don't understand it at
all, but I believe it.
We will continue to lift him up in prayer. We wish we could do something to help. Please continue to keep us updated. Thanks so much for the post.
We love you,
Dianne and Danny Snead
PS Mom said tell you she is praying for you.
Todd & Melisa,
You two are some amazing people! I am truly blessed that God allowed our paths to cross on this journey of life. To see/hear about little Jameson has weighed heavily on my heart the past week. You all have been in my prayers constantly. I realize there's nothing I could say that hasn't been said already, but I want you (and all the Setsma's) to know how much I love you! There's no way I can begin to imagine what standing in your shoes may be like, but I know you're trusting in God daily.
A passage I've found to be refreshing and something firm to stand on is John 16. This takes place as Jesus is preparing the disciples for what is about to rock their world (actually all mankind)...his death, burial and resurrection.
The Message begins like this...“I’ve told you these things to prepare you for rough times ahead.....and ends it with this...”I’ve told you all this so that trusting me, you will be unshakable and assured, deeply at peace. In this godless world you will continue to experience difficulties. But take
heart! I’VE CONQUERED THE WORLD.”
Lean on that promise...He’s conquered what you’re dealing with and you win!!!
Kevin
Hello,
This page is a wonderful testimony to your faith in Christ. I cannot imagine going through what you are going through right now, but I do know that the knows every trial that comes our and the result will always be for His glory, His honor and for our good (even when we can't see it). I will be praying for you guys and I know that the Lord's words to the apostle Paul in 2 Cor. 12:9 "My grace is sufficient for you, for My strength is made perfect in weakness." is also meant for your family as you go through this difficult time with Him always covering you with grace and mercy. I will continue to hold you up in prayer in SC.
-Joey Parker
Hello,
This page is a wonderful testimony to your faith in Christ. I cannot imagine going through what you are going through right now, but I do know that the Lord knows every trial that comes our and the result will always be for His glory, His honor and for our good (even when we can't see it). I will be praying for you guys and I know that the Lord's words to the apostle Paul in 2 Cor. 12:9 "My grace is sufficient for you, for My strength is made perfect in weakness." is also meant for your family as you go through this difficult time with Him always covering you with grace and mercy. I will continue to hold you up in prayer in SC.
-Joey Parker
Todd and Melissa,
I don't know if you remember me but I am friends with your mom and dad at church.
I have been faithfully praying for little Jameson. I know personally that He is the great physician. I am praying for His touch on this precious little one. I pray as you walk through these days that you will feel the arms of Jesus around you.
With a humbled heart and many prayers,
Cathy Walton
Melissa and Todd,
Please know that we are praying for your family and think of Jameson every day. I wanted to share some info my dad gave me to give to you. You may already have the info but its a good resource.
Please feel free to call her she is great.
Geraldine Kelly-Mancuso, R.N., BSN
DebRA EB Nurse Educator
Cincinnati Children's Hospital Medical Center
333 Burnet Avenue, MLC: 3004
Cincinnati, Ohio 45229-3039
Office: (513) 636-7931
Fax: (513) 636-5867
Check out www.Debra.org if you havent already, it gives alot of info as well.
I hope Geri will be able to help out and give you support for what you are going through.
We love you guys!
Janeen and George Livings
Post a Comment