The Care Project: A Beacon of Hope

This weekend, we had the opportunity to attend a workshop with professionals and parents of children who are deaf and hard of hearing.

It was called The Care Project. Quoted from their website, what it is all about.

"Undeniably, life’s journey is full of challenges. Arriving with those hurdles are different emotions, dependent upon circumstances. An individual facing the challenge of hearing loss needs to be able to rely on a strong support system within the family and community. The CARE Project has a number of components designed to bring families and professionals together for sharing and processing emotions, with the ultimate goal being acceptance and advocating for the best life possible."

I really love this idea on so many levels.

I think having workshops for parents about grief and helping them accept and cope with hearing loss is wonderful. I believe Johnnie Sexton, the developer is really onto something. I wish every parent and professional could have a workshop like this geared for their child who is dealing with a disease or disability.

I find from living with cystic fibrosis and now being a parent of a child with some disabilities; support for understanding, accepting, and coping with daily difficulties is essential. Without it, life would be very challenging and depressing.

Parents want emotional support. Parents need emotional support. This is vital for the special needs community. If you have experienced any kind of disability or disease, you remember clearly when you heard the news for the first time. Your daughter has a genetic lung disease called cystic fibrosis. You have cancer. Your son is deaf. Your child has autism. Your husband is paralyzed.

Accepting this information comes with it, grief. This will come in all different forms, and it will come and go with everyone experiencing it. Grief leaves no one behind. How we deal with it, is up to us. We watched video of parents and children, speaking about how they have dealt with their hearing loss. What it means to them. How they have moved on and learned from it. We watched a video of a professional talk about the lesson she has learned in her lifetime. It was all so moving, very touching. It taught me so much about the hard of hearing and deaf community. It gave me an appreciation for those who have been where we have been. What lessons they have learned, and what they can teach us. This is what makes the world go round.

My husband and I were also able to meet a family within our community who have children who are also hard of hearing. This meant the world to me, to be able to connect with other families. I have a wonderful connection with so many people who are like me, with cystic fibrosis. These connections are very meaningful and full of blessing. But the hard of hearing world is new to us. Gwyneth was just diagnosed 1 year ago. Before this meeting, we hadn't met one other deaf or hard of hearing young family within our community. Now we have, and I feel excited to know we are not the only ones out there.

So, thank you to people like Johnnie who have a vision of how to help others and for starting such an innovative idea like The Care Project!

The Care Project


  1. Praise God for community! I love the comfort that comes from it. Like God's arms for us, in person, through others.

  2. Great post. Love this information and also how wonderful to have " ommunity".

  3. Great blog! I am so glad you are doing this. I followed Nate's blog for many months during the difficult times after sweet Gwyneth's birth. I prayed for all of you and I am so thrilled to see that you are doing well and sweet girl is growing up so well. I don't comment much, but I do read blogs and have one of my own....mostly about my grandkids. Keep up the great writing and I will be reading. Much love to you and your beautiful family.

    LaNell in Oklahoma

  4. My 4.5-year-old niece has cerebral palsy and you're right - just knowing the challenges and having other people to identify with is life changing.

    And I love what you said about grief. My family's love for Evalyn has never one time wavered or diminished because of her disabilities. There was, however, grief and transition when the doctors first spelled out how severe her handicaps were and how little they expected of her life. She's proved them wrong in many regards, but grief was certainly there.

    Thank you!

  5. Came here from your hubby's blog which I've been following for about 3.5 years. Just wanted to say hi and let you know what a pleasure it's been seeing how God has blessed your life over these last few years. Gwyneth one little cutie pie and it's been wonderful to see her grow and develop. All the best, Louise x

  6. How wonderful! I'm so glad to know that you've connected with this group. I hope that they will be a source of hope for you as your family moves forward.

  7. What a sweet blog ! I have been following your life on CF husband since before the baby came along.

    I'm old enough to be your mommy and have a son who is a heart transplant recipient and stroked when he crashed and is now disabled. He turned 20 in December. I know grief, and fear and sadness and yes, anger.

    Maybe that's why I admire you so very much. You and your sweet man -always so positive and uplifting and strong.

    That gorgeous child is a very, very lucky one indeed.

    Please know that you are always in my prayers....

    a stalker/reader from good ol' NJ !


  8. I'm so excited to hear from YOU! I've followed your family via Nate's blog for several years (though I haven't commented). I just love you guys. You are so fun and positive!

    I'm also so glad that you have found a community of support. It's truly daunting and overwhelming dealing with all the therapies, education options, school struggles, etc., etc. with a special needs child. I hope this group will cheer you through.

    My husband is profoundly deaf and my 2nd son (age 5) is hard-of-hearing. His hearing loss was a big surprise to us, even with my husband's deafness. Of course, it's not too big a deal in our home as it's our norm.

    As you might have guessed, I worked in the field of deafness (and disabilities) prior to meeting my husband. I know that you and Nate will have many decisions to make, language options, educational decisions, therapy avenues, etc. etc. We in the field tend to have strong opinions on the best avenues to teach a child. But I want to encourage you with this: Having worked with adults with hearing loss for many years, I can tell you that, more important that any choice you will ever make regarding anything, is parental involvement. Don't feel that if you try a certain path that you have to hang all your hopes on this method or even that this method has to be permanent. I've seen individuals from all ranges of the spectrum and those that have had the most "success" and are the best adjusted are those who have parents that were involved and worked with them and that shared their life journey deeply with them. So, know that you and Nate are amazing parents and I know you are already doing these things. Gwyneth is a blessed little girl! And I know she blesses you more than words. In being involved as you are, you are already doing the best for her!

    I know I'm a strange lurker you've never heard of before, but I'd love to encourage you or discuss any thoughts you have regarding deafness or anything else! I certainly don't know everything but I have a lot of resources.


  9. Just read my own comment and I think I come across as a little convoluted or a "know-it-all." I don't and I'm not! Please know I just wanted to encourage you to say that if you are involved with Gwyneth (and I know you are)then you are already doing the best thing for her! You will come out alright! I know God is guiding you every step of the way. And I know you don't need my input. I just happen to love your little family from afar!

    Much love,
    Lisa, again

  10. I am so glad to see you started a blog! I've been following Nathan's blog since little Gwyneth was born and I was pregnant...and had a preemie a month after Gwyneth was born. His blog and your story have given me so much hope and encouragement over the years. My little preemie is now an almost 3-year old with a form of CP and a little brother (14 mos) who also has CP. I am also hard-of-hearing (since infancy).

    Support groups and communities are essential. Glad you found this one.