Saturday, January 9, 2010


This post is about Dylan's big sister Hailey. She is the best big sister he could have ever asked for.
These pics are from today - take note it is January 9th and it is 70* in So. Cal. What has happened to winter?

Dylan 8 months

Dylan 3 months

Dylan 1 month

two weeks old

4 days old

I have been reading Chicken Soup for the Soul - Caring for Children with Special Needs and it has made me think (and cry). One particular essay titled "Believe" really touched my heart. It made me think of Hailey and what a wonderful sister she is to Dylan and what a wonderful daughter she is to me.
Back to when we got Dylan's WHS diagnosis the social worker came up to me and handed me a pamphlet about a long term care facility for medically fragile children. I looked at it and thought "is Dylan so sick that he cannot come home, or will we not be able to care for him ourselves?" He just looked like a newborn to me - eating, sleeping, pooping, crying. Mitch and I had created him out of love and he was OUR baby, we loved him no matter what. The last thing we wanted to do was put him in a nursing home. I remember her saying that some parents choose not to take their babies home from the hospital with a diagnosis like this, because they want their other children and themselves to have a normal life. (Now before you get mad at this social worker she also told me that she was just giving us all of our options). But of course after hearing this my first thought was of Hailey - how would she have a "normal" life. I looked at the list of specialists that would need to see him and felt completely overwhelmed- Hailey had never seen anyone other than the Pediatrician and in her 3 years had only been sick once with an ear infection. I thought to myself, how would I be a good mother to Hailey and give her the love and attention she needed, how would I go back to work, how would I take care of my horse, how would I live life as I knew it? I will also admit that I did feel a little detached from Dylan in the beginning. It was very strange to come home after having a baby and not have your baby with you. In a way I felt like I hadn't given birth. I missed out on that initial bonding, we weren't allowed to hold him until he was 3 days old and when he was diagnosed we were told that he may not live very long. In that first week in the NICU every doctor that came to see him told us of something else that was not right inside his little body. I felt like somehow it was my fault because my body had made him and didn't make him perfect. I blamed myself- was it because I had been on birth control pills, was it where I worked, the cleaning products I used, where we lived? I know now that it was not our fault but just a fluke of chromosomes.

When we finally left the hospital with Dylan I felt like it was with a death sentence, I was so afraid that he was going to die and so afraid of what the future might hold that I had a really hard time feeling happy just holding him/loving him. I was devastated by the loss of my "perfect" baby and I cried all the time. But not Hailey. She was so excited to have a baby brother and to be a big sister. She wore her Big Sister shirt with pride and every time we went into the NICU to see him she wanted to hold him and give him lots of kisses and hugs. She didn't see that Dylan had anything wrong with him, he was just her baby brother that she had been waiting anxiously to meet and love. She was my shining light in those first few dark weeks. When we brought him home she made me realize that everything was going to be o.k. and our family was going to be "normal." She helped me see past the diagnosis and just see Dylan, the beautiful new addition to our family. She didn't care that Mommy had to take Dylan to see the doctors again and again, she just wanted them to check her too. She plays with him everyday, helps to take care of him and thinks he is just the most precious baby ever. She doesn't think there is anything different with having Dana, Dylan's therapist, come to the house every week - she just wants to help teach him too. She loves her baby brother completely and unconditionally and smiles every time he looks at her, in which she replies "aaawwwww, he smiled at me Mama". If we are out and about and someone walks by she proudly proclaims "that's my baby brother, isn't he soooooo cute!"
I love both of my babies with all of my heart. I believe that everything happens for a reason and that Dylan was given to us to teach us all about acceptance and love. When I hold him I feel more love for him than I ever though was possible. I am truly blessed with a wonderful family and life. The funny thing is that our life really isn't that much different from before Dylan was born. I still work part-time as a Labor & Delivery RN, I still go to Stroller Strides, I still get to ride my horse (Hailey and Dylan love to go to the ranch with me), we still go on camping trips and Hailey still lives a pretty charmed life. The only difference is that there are a few more appointments thrown into the mix.
Sorry to go on and on but I have had a lot of thoughts, feelings and words to tell and just had to get them out today.


  1. Kristy,

    tq for sharing your feeling and story with me. it is true what you've wrote. i was having those feeling and all sorts of things and questions across my mind when our baby was diagnosed with WHS. i was blaming myself too. i too worried about her future. the most scary part was when the doc said she can just die out of sudden without any prior notice. her brain can just suddenly shut down. i really can't stop thinking of those words. sometimes i just think that i need to be by her side all days. doing nothing, afraid to leave her alone. hope to hear from you again... tq!

  2. Kristy- I can relate to a lot of the initial feelings you had and to the incredible feelings you have now towards Dylan. It was so hard when I just gave birth, had all of those emotions, but wasn't able to enjoy my baby initially, just look at her and hold her little hand. My body was going through so much from birth that the stress of the diagnosis was a lot to handle. I think it can be a lot to handle at anytime. But we all got through it. I would not change a thing about my life today. We truly have little blessings in our midst. I think Haley is amazing. Dylan is so fortunate to have such a devoted and loving big sister and what a great reminder to you of Dylan's perfection.

  3. Awww big sisters are the best. I too was worried about Izzy and what she was missing out on because Norrah is different. But my husband always remind me that siblings of special needs children never think they had a horrible life because of the special needs instead they are stronger, more compassionate, accepting, loving and nurturing. All great and noble character traits. And I see that in Hailey just like in my oldest daughter.

    Thanks for writing this post. It is great.

  4. This blog was so helpful to read. I am still in the early stages of acceptance of Kaylee's diagnosis, but my daughter and son are unaware of Kaylee's condition and do love her unconditionally. I will try to look at my family through their eyes. Thanks for writing this. :-)


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