what a family looks like…
It would be almost impossible to describe what this last week has been like for our family. The last day of the Hunter’s Hope Family & Medical Symposium was yesterday. I’m not a fan of “good-byes” so this day is always bitter sweet.
We laughed.
Cried – a lot.
Hugged.
Prayed.
Ate – way too much.
Stayed up late.
Snuggled sick children.
Watched as children with disease performed at the annual talent show.
Listened.
Spoke words of encouragement, fear, frustration and hope.
We loved.
It’s hard to explain, but for the first time I felt like I actually experienced what Jesus talked about when He prayed that His followers would be ONE.
The deep heartbreak and joy that we have all experienced has unified us in such a way that we are one. We’re family. We would literally lay down our lives for each other. We work together in humility because we get it. It’s powerful. Strong. Real. Beyond human comprehension.
And what pierces my heart the most about this is the fact that our greatest loss brought us here. Our deepest pain is what continues to weave our tapestry of love. Suffering has bound our hearts unbreakable.
Even as I write this I’m reminded of this verse:
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” Isaiah 55:8
That God would choose to bring us together through suffering is beyond my comprehension. The cross – the perfect example of this – is His way – which is higher, beyond my way – our ways. He’s God. All that He is and does is far greater than our ability to grasp. It should be. If we could figure Him out, He wouldn’t be God anymore. He would be a man-made god in our image rather than the magnificent, beyond understanding, awesome, Creator that He is.
This facebook message I received today from a teenager named Zac (who has a brother named Trevor in Heaven) sums it up:
“Thank you so much!! It really means a lot. I wouldn’t trade a single thing for our “family”. Although I wish we hadn’t had to become family under these circumstances, but God works in mysterious ways and I’m so thankful to be as close to your beautiful family, especially your three amazing children.”
Yes, He works in mysterious ways and yet His ways are perfect.
For Him to bring a bunch of strangers together through suffering – making us One – a family through Him is – well…love. His for us and ours for each other.
I pray also for those who will believe in me through their message, that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me…May they be brought to complete unity to let the world know that you sent me and have loved them even as you have loved me. John 17: 20- 23
This is amazing! Its great that your family, and other families can get together, and share each others joy, and pain…
Jill,
He just never stops showing us his love…and just how powerful it is…how comforting is that !?
you are a blessing to so many children and parents
Jill– you are just amazing— I keep waiting for my time to make a big impact on others lives through Zane and my personal experiences— I pray that God continues to work through you to work and touch so many others. You are the best!
Jill you and your family are such an inspiration.
Sometimes your “family” isn’t always the family you were born into, but the people who love you unconditionally and are always there for you, in good times and in bad. Just like you and your family are for all those wonderful children you give comfort, love and hope to. You are their angel sent by God to do His will and even though you had to suffer in the process, you have not lost sight of the importance God is in our daily lives and the path He is taking you down. Thank you and your family for enriching our lives.
Jill, Your thoughts reminded me of the song The Blessing. It talks about the very desire of our hearts, deliverance or healing or joy, coming perhaps through tears or pain and suffering. While you have experienced great suffering, you have become the answer, the hope and courage to those you are loving now. And one day you will receive your greatest blessing as you meet Hunter again. I pray you can find Gods perfect peace in the waiting. You are loved so very much, and not just by me. Jude 24-25
Aw, that’s sooooooooooooooooo amazing! It sounds like you had a glorious week! Every story I’ve ever read of “your family” (I’m talking all of the precious angels who have ever had to battle the behated Krabbe’s Disease and fight the fight that all of you have fought together) has inspired we in a way i just can’t describe! My heart goes out to each and everyone of you and I thank God every day that my parents and grandparents bought my big brother that Buffalo Bills Chair because without the Hunter’s Hope New Letter that came with it when I was like 10-years-old… I wouldn’t not know anything about all of your beautiful, wonderful, courageous and living miracles of tough kid warriors out there defying their doctors orders and doing the impossible. All of you leave me wonder-struck! Your stories of trial and tribulations have brought me to believing that Heaven must be an even more cooler place that church has ever done for me… because there are such amazing angels and brave souls there already! I can’t wait to go and meet them all there someday soon… but, not two soon! This is why Hunter’s Hope will always be my favorite charity! Thank you for all that you do!
Beautiful, as always, Jill! Thank you for sharing with us. Your family continues to be a beautiful example of God’s grace and love. Keep fighting the good fight, and keep sharing with us. I know that I need to hear it. God bless!
This post is written as though you read my mind and spoke what is in my heart of hearts. We so desire to create the same kind of experience for families, widow/widowers who have lost loved ones here in the Rochester area and vicinity through an outreach of Benjamin Ministries. I shared this post with my pastor and his wife as you described so beautifully what we would like to allow those who are grieving the loss of a loved one to experience through our first bereavement respite/conference. This came at the perfect time as our ministry is praying we can invite others to catch this vision. So happy your week was a success and for the many blessings so many reaped…for a lifetime. What a beautiful light you are sharing to a very troubled world! Selah.
Amen! Amen! Amen!
Thank You, Lord!
Yes the Lord works in mysterious ways! I learn more the more I read in your posts and on your website and I am beginning to understand more and more why you do what you do. “We” on earth are so blessed to have angels here like the Kelly Family. Thank you :)
Dear JILL,
Someone gave me a copy of your book for Christmas and what an inspiration it was. I am thankful for your comments and honesty. I have been a pastors wife/pastor for 34 years now, I have had my share of heartbreak and loneliness, sometimes people are mean and cruel and don’t want to take time to listen to me, they want me to do all the giving but sometimes I need a shoulder. This year my sister died after battling colon cancer for 2 years, I am so thankful I got to take care of her the last two weeks of her life, but truth is I still feel empty and miss her terrible, I know she is with the LORD, my other sister had passed away suddenly 16 years ago, I know she is with the LORD, but my sisters were my best friends, I could talk with them, be honest with them, they loved me for me….I feel so lonely now, you speak what I feel at times, I so appreciate you. I pray for you and your family. By the way I was a great fan of the Buffalo Bills when your husband played, my sister had even made a snowman and put the Bills emblem on it at that time and sent me the picture. Thanks for being you, may God continue to use you in a mighty way for His Kingdom, His glory
Jill, I wanted to say thank you for sharing all of your families ups and downs. It has shown someone in my life that when things go wrong,not to turn to the “dark side”. There is always a light if you look for it. It has also shown my son (who is a QB) that praying and not hiding his faith is cool. Blessings to you and your family. Thank you
I think that God brings us together in our suffering so that we truly know we are not alone. We always try to feel God in our hearts in our times of pain and suffering, but I think he brings us together with others just in case we forget that he is there with us walking the same journey.
It’s bittersweet, as you said, to be brought together under those circumstances. But I know it’s a comfort to have someone who truly knows what you have gone through. I think that’s how the family bond grows so tight.
God bless you and all of the symposium families. :)
I’m learning every day how powerful my faith is…Thank you Jill!
Your entry reminds me of the scripture in Genesis 50:20. Joseph is speaking to his brothers here, but as we know, the enemy uses people to accomplish his purposes. “But as for you, you meant evil against me; but God meant it for good, in order to bring it about as it is this day, to save many people alive.” The enemy meant for the destruction of your family, but God turned the circumstances around and used your pain and suffering to bring good into the lives of so many! What a happy reunion awaits you in Heaven one day!
Sending love your way…
jill,
your family is a blessing for so many families.
thank you for everything you do.
god bless
elisabeth
1Jo 3:16 Hereby perceive we the love of God, because he laid down his life for us: and we ought to lay down our lives for the brethren. KJV
Jill, yours and your family’s unselfish desire to share the Lord with those around you through the story and testimony of your son Hunter, is truly an inspiration to the rest of us. When I grow weary of the race, so many times your story is before me and I push on because your road was much more difficult than mine. Your love for the brethren, your love for LIFE is a Godsend to us.
1Jo 3:11 For this is the message that ye heard from the beginning, that we should love one another. KJV
amazing input – thank you all so much for sharing:)
I know I’ve said this before but I thank God that we all get to share like this!!
Hi Jill,
Thank you so much for your honest sharing. Circumstances can be so difficult to our families, both blood families and Christian families. I just experienced one of the hardest moments of my life as a parent and I remembered your statement at Penn York Camp that you had to hang on to Jesus’s shirt tails and that is what I did. My son is a medic in the US Army and I received a telephone call on Thursday, July 14th telling me he had been injured in a blast (you may have seen this in the news in Buffalo) and because of so many ways God prepared me for this, I was able to stay calm while awaiting his phone call. It did come on Friday at 8:30am and Praise God, he was protected. There are many details but the basics are, there was a 2000 lb explosion 50 feet away from him, he was thrown approximately 150-200 feet in the air and did not hit anything but the ground and was knocked out for a day or two and has bruised ribs. God certainly answered our prayers. I was overwhelmed with the amount of prayers and encouragement I received from both those I know and don’t know. I am not sure that this comment is pertinent to this article, but I just had to share with you how God used you to help prepare me for this. Your words came to me when I didn’t think I could handle the fear and uncertainty of my child’s condition. I grabbed on to Jesus’s shirt tail and hung on! God is in control!
You are truly a blessing and a inspiration to all! GOD bless.
Love from Canada
Jill,
I loved this entry. My family is huge, as my grandmother was one of 19! As a family we have learned to appreciate each other, be there for each other unconditionally.
God has blessed our family, and thru our trials & tribulations has made us stronger.
Last night after reading your facebook message, I typed Hunters Hope Symposium in the search engine on my computer…I wanted to learn more…lots more of what its all about! (A little bit about me…I’m VERY detail oriented, when something interests me I want to know more and more and sooo much more about it…sometimes I drive people ‘nuts’ by asking ALOT of questions, certainly not to be noisy but because I like detail, I like learning, I like to know all I can know about a subject that intersts me!) So the search engine took me to a link that told me all about what the Symposium is all about, I think I clicked on every ‘button’ there was to click on…then I came across Judson’s page…I spent over an hour there reading his Mom and Dad’s blogs, looking at pictures and videos…one thing I didn’t know was that Krabbe can ‘kick’ in at any time so to speak, in my not knowing, I thought Krabbe hit from birth…
I cried and prayed for Judson’s Mom, Dad and sister…what a beautiful story.
So, I say all this to say, Jill, thank you sooo much for all you do! In your suffering you have been a light to a hurting world and you are making a difference…God is sooo good and He’s using you! THANK YOU! Hugs and prayers are with you and your family xox *Sherry*
Jill, how beautiful! You and your family have truly experienced the true essense of life and just about every emotion that God has gifted us all with, as you all came together for His children. Jim Valvono said it so well when he said in his last speech at the ESPY awareds just before he died, that we should be moved to laughter and tears each day to experience life and you all did that. God sees us as one big family of His and yours is a very special entity of it as you embrace the joys and sufferings that are yours. God bless you all and thank you for sharing. My prayers are always with you:)
Jill..everytime I read anything you have written, a book, a blog, journal..anything, I am amazed and strenghthened by your words. You have found a way to express & share your blessings with EVERYONE! When I read your books, I cried, laughed and prayed with you and your family. Through your children, your marriage & Hunter’s illness, God has shown so many of us a way to cope through your words. You are an inspiration and truly a gift for all women:)
Jill,
I’m reminded over and over that God set up the family unit. It begins with the love between a husband and wife (symbolic of Christ’s love for his church). But a family is truly born when God blesses with children. He gives us these precious little ones to love. Our children bring far more joy and happiness to us then we could have ever known. Even in the hardest and most painful times, God’s grace is evident through the blessings of our children. We become more like Christ as we love our kids, cry with them, and even as we discipline them. Sometimes we even have to say, “Good Bye” to them.
I believe God is showing me a little bit of Heaven every time I have the privilege of spending time with my family. Teaching my little girls to ride a bike, play dress up, or just reading a bedtime story. Each of those joys give me a glimpse of what Heaven will be like. The complete joy and happiness that only the family unit, which God ordained, can bring.
Thank you for putting forth the example of a Godly family surrounded by true love and dedication. May God continue to bless you!
God bless you and your family!!! God has a plan for us all, yours is a beautiful gift to help others!!!
I am not a fan of “good-byes” either but in my calling as a Chaplain, working in hospice, it is something that happens every week almost. I have become a part of many families over the years and it is awesome the bond you develop with the patients who are dying and their families. I feel so privileged to have shared these precious last days with so many wonderful people and their families. They have taught me how to live and to enjoy life and appreciate the days we have together. I have many precious memories and my life is so rich from having met and learned from every family how unique and special God has created each one of us.
You and your family are truly a blessing as you have taken a tragedy in your life and allowed your experience to help other families going through similar experiences.
Your gift of writing is truly amazing. I have come to look daily for your messages as they are truly inspiring. You have made the world of believers your family and we have all been blessed because of your love of family. Thank you for sharing your gift!