Friday, March 23, 2012

Words Of Encouragement...

Corbin and I can't believe it has been a whole month since our first ultrasound at 19 weeks when we found out that there might be something wrong, and 3 weeks since we found out that our little baby has Spina Bifida. For me it feels like its been so much longer than that. I guess that is because so much has happened in such a short period of time. Our "plan" to have a baby, move to Oregon, and for Corbin to start the PA program at OHSU have been put on hold...well at least 2 of the 3. Our little baby of course is still on her way, just not as we expected. We have had time to process a lot during the last 3 weeks. Going from shock to fear and now back to the excitement of having a baby girl.

My biggest fear now is not having a baby girl with Spina Bifida, but having a baby girl that will have to go through so much during the first few hours of her life. I'm trying to take things one step at a time and not think too far beyond that. Well, last night Corbin and I went to Primary Children's Hospital to the Spina Bifida Education night. We got the opportunity to hear from some incredible people. After the speakers, there was a Q&A portion where we learned so much from the questions that other parents who had kids of all different ages asked. When the workshop was finished we talked with several other parents. I can't tell you how encouraged and inspired I was. Although I didn't make it through the night without shedding a few tears, it was a different feeling to be surrounded by other mom's who knew exactly how I was feeling and what I was going through. When I expressed my fears about having our little girl only to have her immediately taken from me to go into surgery, I knew that there were others who had experienced this as well and survived it. One cute mom told me that it is the "worst part of the best day". I know that it will be the hardest thing I have ever done as a mother. But I was given the advice to focus not on the surgeries (as there will be many) but on the outcomes. Still I can't fathom how I will cope with recovering from a c-section when I want to comfort my small and helpless infant. How does anyone do it? They do it because it is the only thing they can do. Put all of our trust in the Dr.'s and nurses to take care of our babies. And now I have peace in my heart knowing that at least Corbin will be here in Utah, instead of Oregon. I know I will get through it because others have....and have lived to tell the tale. I made some great connections and learned so much. I have learned that we will be better for it because I see it in the parents I met. They are loving, compassionate, and strong people. I only hope I can live up to the task.

I haven't had a chance to blog yet so I apologize to those who were expecting a beautifully composed "Corbin Blog". Don't worry, he'll be back!


  1. It was a beautifully composed Mackenzie Blog. We are thinking of you guys and know that all of these things are happening in God's wisdom. You are already and will be even deeper and more grateful people for having these experiences. Hugs!

  2. I just found your blog today. I am 38 yrs old and have Spina Bifida. I do not know if you are on FaceBook, but if you are, there is a wonderful group there called United by Spina Bifida. A lot of the members are parents of children with Spina Bifida or parents to be as yourselves, but there are also adults with Spina Bifida as myself there too. I'll be following your story and wish you all the best of luck wirh your baby girl.

  3. So happy that you found a support group! Knowing SB parents and especially their kiddos, helped us so much when we found out about our son (Brendan- age 5). They helped me to know that he was just a kid, who happened to have SB. Surprisingly, our life went on as normal (with a few extra appointments!) and many days I forget about the SB, because we have a "new normal"! And I love it!

  4. I just found this blog so i am playing catch up. One thing parents of children with SB can rest easy knowing is anything that happens before the age of 4 or 5 we have no memory of. I have SB myleomeningocele level L4/L5 and I hear the story of all that happened after my birth and all I went through. To me hearing it is like hearing a story about someone else. I have no memory of it and that is a blessing :) Now I am grown and have kids of my own. My son has SB Occulta the least severe form until then i didn't know what you parents went through and now I do.