Kaitlyn's Korner: And the greatest of these is ...

Monday, December 19, 2011

And the greatest of these is ...

Lately I have been thinking a lot about what Kaitlyn has taught us and she has certainly shown us it’s all about perspective and what’s important. And sometimes that means shifting your perspective so that you can focus on what’s important. With Christmas looming we are all in a rush to make sure we get those that matter most to us just want they want, but when thinking of Kaitlyn it seemed like a challenge to figure out what she wanted for Christmas until I really listened to her. See Kaitlyn doesn’t get excited about toys or books or movies much anymore, but deep down inside love still moves her to get so happy she squirms and wiggles, her eyes light up, and she tries her hardest until that pretty little smile is on her face. When seeing her smile I am reminded of 1 Corinthians 13:13 “And now these three remain: faith, hope and love. But the greatest of these is love.”

When a person has lost everything else, love is what matters most deep inside. Love from those around us, and God’s love. No toy or book has ever made Kaitlyn smile like she does when daddy or mommy get down next to her and tell her how much we love her. And as parents when it has felt like everything is falling apart we have been ever comforted in the hardest times by God’s love. For me that really puts life and the Christmas season in perspective. It’s about love and the gift of love, a gift we were both given and have the ability to give that doesn’t cost a thing.

John 3:16 “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”

Now I love Kaitlyn and know what it’s like to love her so much that I will let her go when she is ready, but that’s because I can’t control the outcome. I can’t even begin to fathom the level of love it would take to willingly give your child up to die for others when you know and can control their fate. Love is truly an amazing gift!

So for everyone rushing around and worrying whether they have just the right gift, listen to Kaitlyn for a hint, what they want most and what matters most is love, so don’t leave that off your list!

Pepere's love makes Kaitlyn smile too!

6 comments:

Jill FlintonDecember 19, 2011 at 11:31 AM
Love is so important, for everyone. Thank you for the reminder.
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AnonymousDecember 19, 2011 at 11:47 AM
Such a great post! Love really is truly what matters. The most important things in life aren't "things". Thanks for such a strong message! So inspiring! My family continues to have you in our thoughts daily!!

Ali Reardon
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Chris and CarlyDecember 19, 2011 at 1:28 PM
Very powerful message. Thanks, Deanna. Certainly puts things in perspective.
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Deanna LDecember 19, 2011 at 2:25 PM
Chip wrote this one- I didn't! :-)Deanna
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AnonymousDecember 19, 2011 at 10:46 PM
Chip - Jennifer Otero shared a link on FB to this post and I decided to read it since I hadn't seen your name in ages. What a great message, and an inspiring perspective...I'm so glad I happened upon your blog. You have a beautiful, beautiful family. Merry Christmas. :) - Blayke Epley Turrubiartes
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AeriskateDecember 20, 2011 at 5:45 PM
I have been following your blog and praying for your family since late September/early October (saw a link posted by Amy Cook on FB). I may not know you guys, but I love you all so much. On days when parenting gets tough, your family gives me what I need to remember to be kind, to hug my kids, and to love on them no matter what is going on. Thank you for being an inspiration to so many. Merry Christmas to your whole family, especially Kaitlyn!
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About Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease that affects metabolism and is caused by genetic mutations. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three types of Niemann-Pick Disease, Types A, B and C.

Kaitlyn had Niemann-Pick Disease, Type A, the most severe of the three types. She lacked an enzyme called acid sphingomyelinase. Since she didn't have this enzyme, her body couldn't get rid of sphingomyelin. Sphingomyelin has nowhere to go so it accumulated in her cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. There is currently no treatment or cure for the disease. When Kaitlyn was alive, she was 1 in 5 in the United States with Type A.