Friday, October 23, 2009

Another Diagnosis.....

This is not an easy post for us to share (Charlie is writing this one......I can't do it)
We have been struggling daily to make sense of why our lives seem to be filled with such hardship. Our hopes were high and still are as Boston starts his seventh week in the NICU. So many of you have ministered to us with meals, lawn mowing, money, gift cards, and numerous calls and emails. Each time we are reminded that God uses all of you to love and care for us! We will never be able to repay you but also know we will forever be grateful......Thank you!

This Thursday Kelly and her dad returned from lunch and our lives were hit with heartbreaking news......"Boston has tested positive with Down Syndrome."
The news was shocking.
It has been debilitating to Kelly and I emotionally, spiritually, and physically. Although God does not answer our questions of "why," He does continue to allow us to start each day, serve our children in love, and begin to heal our hearts.
We know many of you have been praying and will take this news incredibly hard. You might even be angry or sad (we are) Please take one piece of advice from us at this moment: Hug and kiss the ones you love and let them know how much they mean to you. Brooklyn and Boston are so wonderful - gifts of God sent to us and we know that through the comforting of God's spirit we will triumph through this.
We apologize that we are not answering our phones (this is all too much right now) but please feel free to email, facebook, or comment here on the blog! We appreciate your prayers so much and thank you for always checking in on Brooklyn and Boston!


  1. We are deeply sorry for this news. Know that ALL of your friends and family are here for you in any way possible. God will show is hand in this too (I know that is hard to believe.) We love your family. You are in our thoughts and prayers. The Blair Family

  2. Kelly and Charlie,
    Mark and I are saying prayers for your family. As we have become family through our Journey with Rett Syndrome, we are at a loss on how to give you any comfort right now. Please, know we love you.

    Mark, Jen, Sarah and Em

  3. Oh Kelly, my heart is just breaking for you guys...not because Boston has Downs (Downs kids are so wonderfully loving) but because of all the hardship you have been through and will continue to go through. I have been keeping your family in my prayers for weeks and will continue to do so. (((((HUGS)))))

  4. Kelly and Charlie,

    You are in our thoughts and prayers. Please know we are thinking about you, Charlie, Brooklyn and Boston.

    Aaron, Laura and Julia Waltz

  5. Kelly and Charlie,
    Travis and I are shedding tears right now at your news. So sad and so sorry. We will continue to pray and know that this is not your burden to bear alone. Travis says "life sucks. There isn't anything encouraging to say." Such a hard thing to understand.
    Love, Travis and Cheryl Wilhelm

  6. We love you all. We are praying for you and sending our most comforting thoughts. We are so sorry to hear the news, as you are. Boston will bring you much love to you as the down syndrome children do. I wish we could do something for you right now. We pray that God sends the comforter to wrap you in love.

    Let us know if we can do anything.

    Margie and George

  7. My family is praying for you as you deal with this new reality. That adorable Boston is so lucky to be in your family & may you find peace soon.

  8. Hello, my name is Andrea Hughes. Jen Dalton facebooked me and sent me your link. As I sit here with high anxiety as my son/and myself have the swine flu..I felt compelled to write in the midst of our sickness.
    My son Luke was born with a rare genetic disorder called CMS. 1 in 2 million. His needs are seriously high.
    Then..3 years later with high hopes and a kicking baby in the womb..we prayed for a chance to have a healthy baby. Our daughter Hannah was born with Down Syndrome on 11.19.08. I read your post and how so much it reminded me of the post we wrote last year on our blog. We were bombarded with emails as well with Godly loving people so very angry, confused and shocked.
    I write this to you today with all my might from one special needs mother x 2 to will be ok. You will shake the dust off your will get up and know that God is in control. Grieve, get mad...I so embrace it..cry. You are loved honey...and the God of all comfort will pour out His mighty grace from His throne from the hand of Jesus and wash your tears away.
    you can call me anytime..just email me: can read my spiritual perspective that I wrote about my child on my son's blog:
    (on the side will see a spiritual perspective..just click it)or
    you can go to my personal blog and read about our hannah's diagnosis..
    Andrea (mom to Luke/Hannah)
    Either way know this..some random sicky mother from Texas is laying in bed saying " that helped this momma..please". And for this I know..He will answer. He always has. By Faith, we are healed God's way., much love...A

  9. Kelly and Charlie,
    You don't know me, I was linked to your blog through a felow friends facebook page, but I just wanted to let you know that you are in my thoughts and prayers. My heart aches for you and your family, but I know that you are strong enough to face this new challenge; God never gives us more than we can handle. I will hold my son a little bit tighter as I say a prayer for yours.

    "the Light shines in the darkness, and the darkness cannot overcome it." John 1:5

  10. Kelly and Charlie

    How can i find the words to express how i feel for you know. I remember the pain of Livvy's diagnoses so well as you propably do with Brooklyn. Then as that pain passes I remember the joy she brought into my life and how i miss that cheeky smile which could light up a room.

    I know life may not be easy for you, but both of your children are wonderous gifts that i know you will cherish. I dont feel anger as i have had to learn that God has his reasons a hard lesson for me to learn. God has faith in you to have blessed you with both your beautiful children so please have faith in yourselves as you carry on being the amazing parents you are.

    You never walk alone. God bless and so much love xxx

  11. Kelly and Charlie,
    Kirk and I have just wept since we heard your news. We are so sorry you have such burdens to bear right now. Know you are not alone and do not have to carry this burden on your own. We are here if you need us.Love, Kirk and Janet

  12. Kelly and Charlie,
    My heart aches for you as you deal with this new reality. My prayers have been and will be with you and baby Boston! What amazing examples of strength and faithfulness you both have been to those in our community. May God wrap his arms around you!!

  13. I've been reading Brooklyn's blog for some time now, I found it when Kelly commented on my old yearbook teacher's blog post about a Rett event she had attended. Your children are both beatiful, and my heart is breaking after reading about little, little Boston. I'm so sorry to hear the news, but your family is one of the strongest I know of, and I know that you will be able to get through this. I'm thinking about you, and your two beatiful, special children.

    --Amanda Tomaszewski
    San Francisco

  14. We love you. We love you. We love the four of you.
    Kelly, Steve, and Kaelyn

  15. I am so touched by the love I read above here Kelly and Charlie. Look at your support and the love the world has for you. Incredible. I love you
    Terri and Abby

  16. It's going to be alright. His sweetness shines through in all the pictures. He is meant to be. With you.

  17. I just can't reiterate enough what everyone else has said. God will be there, you guys are strong, and you now have two angels in your midst. We are all praying for your family!

  18. We love you and are praying for all four of you.

  19. Kelly,

    I have watched your journey from my perch, thousands of miles away, watched as you grew into the best mother Brooklyn could have, and watched too, as you filled up with grace and love, so much more than a thousand people standing next to you. I know you will step into these shoes too. I applaud your honesty and your bravery and your willingness to be 100% present in your life. Let us know if there is anything, anything we can do.

  20. Charlie & Kelly,
    Brooke, Breckin, and I praying for your family. I pray that God will help bring you to a place of peace about being the best parents there are to two special needs children. Be encouraged that you have people all over the country, some whom you have never and will never meet, praying for your family. It is obvious you have touched so many people by being great parents for Brooklyn and I know you will continue to touch more families.

    My prayer for you is that God will guide you through your thoughts, emotions, and feelings right now.

  21. We just wanted to remind you that you are in the hearts and prayers of many people as you learn about Boston's diagnosis. You are an incredible family with much strength. There is no doubt that you will rise above this and grow to be even stronger, as a result of your faith and love for your children. God has blessed you with two beautiful children and likewise, has blessed them with two amazing parents that will love and provide for them just like any other parents. You guys are an inspiration to all of us. If you get the opportunity, check out Jeremiah 29:11, 12. This has provided great comfort to me during some difficult times. I hope it will do the same for you! We love all of you, and we lift you up in prayer! Marissa & Randy & kids

  22. Charlie, Kelly, Brooklyn and Boston:
    We love you all and you are continually in our prayers. Joni,her Mom and sister and family

  23. Kelly and Charlie, and Brookie,
    Mike and I were terribly sad to hear about Boston....He is a beautiful little baby....
    And we can tell how much you all love him already...This doesn't change anything. You still love this little guy, and he will be one of the family from here on...We will all love him because he is special..God gave us a special gift so take care of him just like you do Brooklyn...
    We will continue to pray for him and for you and Grandma and Grandpa....
    Mike and Cindy Clark

  24. The Lord is close to the brokenhearted and saves those who are crushed in spirit.
    --Psalm 34:18

  25. Kelly and Charlie,

    Just wanted to let you know that Adam and I love you and are praying for you so much right now! I wish I had something magical to say to take the hurt away, but know that God is good and that if you need anything at all...we are here! I love you both very much!

  26. I know all too well what you much be going though. It was VERY hard for my husband. But nearly 4 years later (his birthday is in December) we have a wonderful, funny and loving little man in our house with Down Syndrome. It is easy for me to say that it will get better but belive me it will. You will find love for your wonderful son. He will bring you such joy. My son is the light of my life. He is the bright spot in my day when things are not going well. You will find that too. Give it time. In the mean time if no one has posted it yet check out some of us are on facebook book. Your thought fears and dreams can be suported there and we would love to have you.

  27. I Know for right now a diagnosis of Down Syndrome must seem like the end of the world, but please believe me when I say it really isn't. When and If your ready there will be lots of parents of down syndrome out there who are ready and willing to help you find your path to knowing and understanding what this means for your child. My daughter has down syndrome and is now 4.5 there are speed bumps and we have had our fair share believe me, but I say this with total conviction and love... given the opportunity I wouldn't change a thing. She brings our family such joy, love and understand and peace and my hope for you is that you see past the label to the beautiful child who is waiting to show you who he is.
    Melanie Kent ( I read about you on facebook)

  28. All I want to do is get in my car, drive to your side and hug you. Right now, I am sending hugs to you from my heart through prayer. There are no words to take the pain away from another diagnosis...

    Right now during the time of pain, hurt and the "whys" the Holy Spirit is interceeding. When we don't have the energy but to only sob and groan from the depths of our human souls, the Holy Spirit is at work.

    We love your sweet family, we are praying, and hurting with you. One day at a time, one second at a time.

    All of our LOVE and HUGS,
    Kelly, Kevin and Owen

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  30. I read about you from the Carr's site. I want you to know you are in my thoughts and prayers! I pray that you can feel God's presence and that you feel the peace He is surrounding you with right now.

    As many times as you may ask "why".. just know that all the children I have worked with and taught who have Down Syndrome are the most precious, loving and happy kids I know! Just know that you have Boston who happens to have Down Syndrome....but IT does not have HIM! :)

  31. Hello! You don't know me, I found your blog through a friend on Facebook. Your little boy is beautiful! We also have a son with DS. We actually adopted our son when he was ten weeks old. He is five now and is the light of our lives. I know you must have a million questions, fears, concerns, etc. What I can tell you is that Boston is a precious gift from God. He chose to send Boston to you not to test you, but because you are incredibly strong and He knows that you are meant to be Boston's parents. I can only imagine the shock you must feel. I can tell you that Boston is going to bring you more joy, more love and more strength than you ever thought possible. There are many of us out here who are thinking of you and praying for you and your sweet little boy. Please feel free to contact me at any time. I will keep you all in my thoughts and prayers.

  32. Hello there,

    I found you through a friend on FB. Congratulations of the birth of your son. Doing time in NICU is tough, and then hearing an unexpected diagnosis of Ds must have been really difficult. You probably have no idea what to expect for him, but I can assure you he will light up your lives.

    There is quite a community out here on the web. Please visit... we look forward to getting to know you and your beautiful children.

  33. Kelly & Charlie my heart goes to you, a Big hug for all of you and Thank you for honoring us by sharing your journey of Love with Us....Please hang in there and give a big hug to beautiful Boston we are cheering for him as well for all your beautiful family

    All my Love

    Zenaida Jimenez

  34. Hi, I found your blog through a friend on Facebook. When you are ready, there's a ton of support from fellow bloggy mamas (and dadas!) who have kids with Down syndrome. My daughter is 5 and is the light of our lives! Big hugs.