Since Brenna's birth, we have been privileged to connect with so many wonderful people and families who have shared their incredible stories with us - both those living with ichthyosis and some with other varying experiences and situations.
One especially enlightening and powerful blogger is Carly from the wildly popular blog Tune Into Radio Carly, in Australia. Carly has a type of ichthyosis called Netherton's Syndrome, and she writes very candidly about her experiences and feelings about everyday life with ichthyosis. Her posts are very thought-provoking and honest and cause me to reflect on the way we are raising both our children.
Recently, Carly wrote a post about "skin hunger" and the power of touch in someone's life. As she notes, "...of the five basic senses, touch is the only one deemed essential to human life."
I think there is a tendency to shy away from touching Brenna. We don't want to cause sickness, we don't want to hurt her delicate skin...and yes, we do tend to want to minimize the invasion of Aquaphor all over our clothing, furniture, everything.
But as all babies do, Brenna loves touch. From the day she was born, with those thick plates of skin that appeared so painful (though we'll never know how much her original skin actually hurt), she has craved human touch.
We are a very "touchy" family. We snuggle up to read books, we hold hands, we hug and kiss throughout the day, we tickle and we touch. We have always been this way with Connor, and we want there to be no difference between Connor and Brenna when it comes to touch.
Only time will tell how others will treat Brenna as she grows older. Will people be nervous to shake her hands because her skin looks so different? Will other children fear "catching" her condition at the swimming pool or playground?
The only thing we know for certain is that she will never experience lack of touch in this house!
The other night, Evan and I were taking turns kissing Brenna on the lips and cheeks (which are just as smooch-able as they look, if you were wondering!) She would break out into a big gummy grin after every kiss, and it made us laugh along with her each time. I will hang onto that precious memory forever :)
I don't think there is anything that bonds parents and children together more than positive physical touch. No matter what life throws at us, or how old the kids are, I will never stop kissing and touching my kids. And now, because of Brenna and her Aquaphor-covered face, I will have the softest lips around...double bonus!
What a wonderful post Courtney
ReplyDeleteThsnk you for the mention. I'm glad I've influenced your thinking in se way. I think, from reading your blog, you and Evan do a wonderful job with Brenna - it can't have been easy to have your lives changed so dramatically by this precious little one.
I love the story about you kidding Brenna and her smiling - gorgeous. I do have pretty smooth lips, and though they look aged, my hands are quite soft.
Thsnk you again
I read Carly's post and it really hit home with me too and how we are raising Calvin (who has ichthyosis). Since reading it I have gone out of my way to make sure I am touching him enough because like you said there is a sort of concern that it could hurt, etc. I'm glad this post affected you like it did with me and thank you Carly for writing it.
ReplyDeleteI agree with you too about the importance of touch and was deeply moved by Carly's post as well. Luckily my husband and I are big fans of cuddling, snuggling and giving that loving touch to Evan. I honestly don't even think about or 'feel' those aquaphor smears to the cheek and neck when we cuddle. And it's definitely a win win, getting 'free chapstick'!
ReplyDeleteWhat a wonderful reminder, for me to be sure to touch all those that I love, whenever I have the opportunity. It really is so important, thank you Carly, and thank you, Courtney and Westlake gang! Prayers are always headed your way!
ReplyDeleteI have followed your blog since almost the beginning and have never posted since today. As a very touchy-feely person I understand the need for connection with people and I loved this post and I think there is NO QUESTION that God put Brenna in the right family. What a blessing to everyone. I love your positive outlook on life. What a gift you have in Brenna and Conner. God Bless.
ReplyDeleteI follow your blog and I always walk away from reading your blog feeling like I have learned something special about motherhood. Thank you. I heard of your blog from someone you know I think that has a child with the same rare condition as my child. My son's blog is www.isaacsinspiration.blogspot.com. I wanted to ask if I could add Brenna's blog to my 30 days of prayer. I know you dont know me, but Brenna's story has touched my heart and I would like others to pray for her, only if you are ok with that. (Sorry I would have emailed you this strange request but I wasnt sure how) Thanks!
ReplyDelete