Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Our Land- Found: Purpose and Joy

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Today’s Our Land was written by the lovely Kerith Stull, from Brielle and Me. I “met” Kerith a while ago and have to say that I love her outlook on life. She’s funny, smart, warm, and shares stories on her blog about her family, herself, and her daughter Brielle (more about her below). Kerith shares insights to special needs parenting, therapy, resources, and even when and how to speak to our kids about the “tough stuff” such as puberty and sex (gulp). Kerith is also a recently published author! Take a moment at the end of today’s post and check out her excellent book!

Our Land- Found: Purpose and Joy

My husband and I had plans. As grand as we thought they were at the time, they were fairly ordinary plans. Successful careers. A nice house. Travel. Hobbies. Two children. Maybe a dog. Happiness.

We were well on our way to achieving those goals when cytomegalovirus (CMV) disturbed the harmony of our little family when I was pregnant with our second child.

You’ve probably never heard of CMV, but let me tell you about this monster.

Eight out of ten of you reading this will be infected with it before your fortieth birthday. You might have cold or flu-like symptoms and won’t even know it’s CMV. There is no vaccination or currently licensed treatment. CMV is not routinely screened during pregnancy or at birth, but one child in 150 is born with the virus. About twenty percent of children born with the congenital CMV infection will develop permanent problems such as hearing or vision loss, brain damage, mental disabilities (mental retardation), developmental disabilities (cerebral palsy), sensory issues, behaviors problems, sleeping issues, feeding problems (failure to thrive), seizures, and death.

Our 18-year-old daughter, Brielle, is one of those children.

Brielle has cerebral palsy. Her right foot twists out like a ballerina in third position. This awkward angle and her weak leg muscles make her walk with a limp. The tight muscles in her right hand makes it bends down and it cannot move with much dexterity at all. The cerebral palsy affected her mouth most of all. She has trouble chewing, cannot pucker her lips to sip through a straw or give a kiss, cannot control her saliva, and cannot speak (she uses sign language).

But, oh, how Brielle can smile!

Our Land - Found-Purpose and Joy

With all that she endures throughout her day, she smiles. It’s a smile that comes from seeing only the best in life, being absent of worries, and having a pure heart. Her smile simply lights up a room and helps others forget their troubles, even my own.

My days are filled with doing things for her that she cannot do for herself. Helping her in the bathroom. Getting her dressed. Brushing her hair. Putting on her make-up. Cutting up her food for every meal. Bathing her at night. Brushing her teeth and putting in her retainer. Interpreting her sign language for everyone in her life.

With all that I do for her, bitterness or anger could worm their ways into my life. Of course, there are frustrating moments when I feel the weight and drudgery of the routine caring for her. There are times when I am saddened by what she cannot do or experience like other teenagers. Once in a while, I even have that flash of mourning for the child I lost and the life I will never have.

However, I found my purpose when she entered our lives and needed me for so much. As a special needs parenting blogger and author, I now find myself helping other special needs parents by sharing our trials and triumphs. My purpose gives me great satisfaction and joy.

Our plans for happiness were foolish because I now realize that happiness before Brielle was transient. Pizza and beers shared with friends. A visit from our parents who all lived far away. A fun day at the zoo. A quiet night in front of the fireplace.

I learned the difference about momentary happiness and enduring joy from my disabled daughter because she is not only happy but also joyful. Her joy is truly something special and quite contagious.

My days all start and end exactly the same way. With a smile. It’s not always my smile but hers. There is purpose and joy in my life because of her smile and all that it radiates from within her precious soul.

************

kerith stull

See? I told you that her outlook on life is awesome! Here’s a bit more about her:

Kerith Stull earned a Master’s Degree in communication and worked in marketing before becoming a stay-at-home mother when her children were little. She has been married to her high school sweetheart for the last 24 years and is a recent semi-empty-nester since her 20-year-old daughter moved out to go to college. Kerith blogs about special needs parenting issues at brielleandme.net with her uniquely positive perspective.  She recently published a book, Brielle and Me: Our Journey with Cytomegalovirus and Cerebral Palsy, about her experiences with their 18-year-old special needs daughter and their family’s journey of hope, determination, love, and faith.

You can find Kerith’s book on Amazon:


by Kristi Campbell

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  • that cynking feeling - Fabulous attitude, Kerith!April 16, 2014 – 8:22 pmReplyCancel

  • Dana - Brielle has a fabulous smile – it’s contagious! Thanks for sharing a little of your story, Kerith. I hope your book is a huge success!April 16, 2014 – 8:29 pmReplyCancel

  • Tamara - I think I’ve seen Kerith’s blog before.. I know it because I would never forget Brielle’s smile. For sure.
    I want to read so much more now.April 16, 2014 – 9:16 pmReplyCancel

  • Emily - I can see how Brielle’s smile is infectious just by seeing her in these beautiful photos…Thank you for sharing this. For those of us with our own parenting challenges, I know I have moments of “why me” or “why him?” but after reading this, I am inspired by your outlook and will strive to have less of those moments and remember your very insightful observation that transient moments of happiness are quite different from eternal joy.April 16, 2014 – 9:18 pmReplyCancel

    • Kerith Stull - I am so glad to hear this post helped inspire you!April 17, 2014 – 6:36 amReplyCancel

    • Kristi Campbell - Emily, I think it can be HARD to not say “why me?” or “why him?” because it’s such a mom/parent thing to want for our kids to not have struggles above and beyond what we consider to be the norm. No kid should ever get sick. Or hurt. But they do. And we do what we do, too. You are doing it. I promise.April 17, 2014 – 7:05 pmReplyCancel

      • Emily - Thanks Kristi – it makes me feel better that I’m not alone in having those moments AND that I have your unwavering support. 🙂April 17, 2014 – 7:15 pmReplyCancel

        • Kristi Campbell - Emily, you’re not alone, although our current situations are so different and I HATE the one you’re in. But. You are doing it. And you always have my unwavering support, and peace, and prayers, and well. You know. All of it.April 17, 2014 – 8:15 pmReplyCancel

          • Emily - xoxo!!April 17, 2014 – 8:45 pm

  • Lisa @ Golden Spoons - Brielle’s smile is infectious and joyful, even in these pictures. You have a wonderful attitude and outlook. Thanks for sharing your story!April 16, 2014 – 10:32 pmReplyCancel

    • Kerith Stull - Some days it’s easier to keep that positive outlook than others. But then Brielle’s smile… and I find it again. 🙂April 17, 2014 – 6:38 amReplyCancel

    • Kristi Campbell - Thanks for commenting Lisa. I agree that Kerith has a great attitude and the Brielle has a wonderful smile!April 17, 2014 – 7:06 pmReplyCancel

  • Considerer - I had a measured, considered comment brewing, but I just love her SMILE too much to not just say that – WOW!April 17, 2014 – 1:35 amReplyCancel

    • Kerith Stull - Haha… Well, maybe if you think of that measured, considered comment you’ll share. But, for now, thanks!April 17, 2014 – 6:39 amReplyCancel

      • Considerer - The measured and considered comment starts by thanking you for your frankness, Kerith, in sharing all this. It adds to the ‘voices’ of special needs mom bloggers I’ve read, and it helps to hear it.

        It makes me wonder if you need to be a particular brand of unselfish to a)parent at all, and b)parent a child with special needs (though the latter, I guess you never know until you have one, and it becomes a necessity), and whether or not it redeems the mourning for the ‘normal’ child who was expected (I never promised that the considered comment would be easy to take).

        Because for all Brielle’s awesomely gorgeous smile and the joy which just shines out of her, you still say it’s not easy (I know – parenting PERIOD isn’t easy, but I assume (perhaps wrongly) that it is particularly complex in the instance of having a child with special needs).

        So in the end, I guess I’m keen to know, is it worth it? Because given the genetic heritage which might get passed on (if I’m ever lucky enough to manage to hang onto a baby in the first place) I worry that it would end up being disabled somehow, or damaged, and whether or not it’s fair to even pass on. Or whether there’s a good reason we’re unable to have kids, and whether that’s right and appropriate, given the child we might generate.

        Sorry – quite a lot here, but I’ve been mulling.April 17, 2014 – 7:22 pmReplyCancel

        • Kristi Campbell - Lizzi.
          It is always worth it. Even when we grieve and worry and consider and feel bitter and horrible and life isn’t fair, and it’s HARD and it wasn’t supposed to be this HARD and it’s not FAIR and “why me?” and why why why and and and… (deep breath)…
          it is always worth it. There is nothing like it. You do NOT need to be a particular brand of unselfish. It comes with the job and trust me, I was selfish for 40 years before being blessed with Tucker.
          We do mourn the kids we’d dreamed of. We do. For me, how can I not mourn an almost 5 year old who can’t properly say his own name? How can I not feel bitter and sad and and and and and…
          and yet. it’s SO much more than worth it. It’s everything. It’s everything that matters. These kids, they are everything that matters. all of us, are everything that matters, and they are in the all of us.
          Nobody is damaged until the world damages them. And the world damages all of us by not accepting us. Our differences, our needs, our fears, and our import.

          That’s my 2cents. I’ll be interested to see how Kerith chimes in. But it’s so worth it. Every day.April 17, 2014 – 8:21 pmReplyCancel

          • Considerer - Thank you – that helps.

            And now, the slightly Bigger Badder ask…

            …what if you thought they probably might be born with something wrong with them, due to inheritance, and you had them in purpose, anyway. And they were.

            What if it was your own fault, rather than just an accident of birth or a virus or whatever it is which makes these things happen?

            What if you were concerned that your child probably would have some kind of additional needs at some point – would be genetically predisposed to be broken in some way…would you still have them?

            That’s my current sticking point.April 17, 2014 – 8:32 pm

        • Kristi Campbell - Lizzi – to your question on whether to have a child knowing something may be passed to him or her, I suppose that’s up to each individual.

          First, though, I think it’s important to say that none of us are perfect or remotely close to it. All of us have challenges – big and small and most of them are not our fault. If it were me, and I knew that Tucker may be more likely to have delays, I’d have still had him. If I knew he’d have other issues, I’d still have had him. He’s amazing, in his way, as are all of us. I don’t think anybody is genetically broken. Ever. But, that’s me. We’re all just different. Does that help at all?April 19, 2014 – 4:57 pmReplyCancel

          • Considerer - Helps a bit. Thank you 🙂

            I worry. With this stuff in particular. Could I hold down my child and stick needles in him multiple times a day, knowing it was all because of our choice that he was like it? Dunno.

            Tucker doesn’t need to be hurt to be helped.

            Ack.April 19, 2014 – 6:10 pm

    • Kristi Campbell - I want to hear the measured, considered comment too 😀April 17, 2014 – 7:06 pmReplyCancel

  • ALlie - Kerith,

    What a beautiful piece! I strive to have a similar attitude, and as the years progress, I’m happy that I managed to do so most of the time. My special needs child is 13, and I have to provide a similar level of care for him. You are doing an amazing job – it’s evident from the beautiful smile on your daughter’s face.April 17, 2014 – 7:04 amReplyCancel

    • Kristi Campbell - Allie, I think that some days, it’s easier than others to have a great attitude. It’s hard to watch our kids struggle with things that aren’t “fair” or expected, I think. And I agree that Kerith is doing a great job!April 17, 2014 – 7:07 pmReplyCancel

  • Michelle @ A Dish of Daily Life - What an inspirational post and Brielle has a beautiful smile. I can’t pretend to know what you go through, Kerith, but I found your post touching. I think having children draw a level of love out of us that we never knew we had…we would do anything for them. Brielle sounds like an amazing kid.April 18, 2014 – 3:06 amReplyCancel

  • The Dose of Reality - What a beautiful post. Thank you for sharing Brielle and her gorgeous smile with us!!April 18, 2014 – 2:48 pmReplyCancel

  • Out One Ear - Linda Atwell - She does have an awesome outlook on life. And Brielle’s smile does light up a room…and a computer monitor too. Thanks so much for sharing this. I love how you introduce us all to people we may never encounter otherwise. You are all so lucky to have this thing called internet while your kids are young. There is just so much support. I’m a bit jealous that this wasn’t available when Lindsey was young. I felt so alone…but now I don’t.April 18, 2014 – 8:18 pmReplyCancel

  • marcia @ Menopausal Mother - This is so achingly beautiful. Brielle has a gorgeous smile—she is very fortunate to have such an amazing mother!April 18, 2014 – 8:41 pmReplyCancel

  • Kimberly - Life before her was transient….yes…yes…
    I had no idea that it affected so many women. I can tell you that you are a wonderful mom. I love that through your struggles, you’re able to find so much beauty, laughter, happiness, blessings…and that the both of you are helping so many others.
    Absolutely wonderful post.April 23, 2014 – 1:27 pmReplyCancel

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