Mack's Mom - Joubert Syndrome & Ocular Motor Apraxia

Sunday, July 2, 2017

A goodbye to 'Mack's Mom' and a hello to new beginnings


I began blogging (and putting videos on youtube) for 2 main reasons- to keep track of Mackenzie's progress and to update friends and family especially during her early years when we had doctor's appointments quite often. I had no idea that the blog and youtube videos would be seen by so many around the world (and that I would get messages quite often from parents going through similar journeys).

I am thankful for the connections we've made through sharing Mackenzie's story, locally and around the world. Mackenzie's story has encouraged many and many have encouraged us. I have a very close friend (we've never met but hope to meet in the near future) who contacted me this past year because she came across this blog. She has daughters similar to Mack. We text on a daily basis and talk on the phone often. This blog has also helped us become close to our Joubert Syndrome family (where I also gained close friends who I talk to often). 

But as Mackenzie gets older, BJ and I want it to be her choice to continue to share her story- not ours. And for this reason I have decided to step away from Mack's mom blog. 

We state many times how we've learned so much through parenting Mackenzie. She is on the 'mild' end of the spectrum with Joubert Syndrome so we've seen what it's like to parent a child who doesn't do things in the "typical" way, but we've also seen her hit milestones (just a little later than the norm). We've watched her never give up. We've learned that determination goes a long way. 

We've gone through many phases the past 7 years of parenting. Two years ago I felt like I hit a wall. I questioned everything. I didn't feel like I (or Mack, or we as a family) fit in with anyone. I kept searching to find someone to relate to. But over the past 2 years, I realize that God continuously places people in my life to show me that even though our family 'situation' may be unlike anyone else's, I can still relate to those closest to me. I've realized that we all have our struggles. But it's up to me as to how I handle those struggles - comparing to others will essentially get me nowhere. 

I know God allowed me to realize so much in order to help Mack realize the same as she gets older. Instead of looking at Mack as one who "struggles", who has "learning disabilities", who has "special needs"- I look at her as being unique because that's what I want her to see herself as. I want her (and others) to realize that all of us are different in our own way. But that it's never ok to look at or treat someone differently. And even though the plan for our life doesn't always turn out the way we imagined and even though we may encounter our share of struggles, it's still well worth living. Especially since those struggles end up being blessings in disguise. 

Thanks for all of the love and support. God has truly blessed us. Hopefully you'll be hearing from Mackenzie in the future. 😉

-BJ, Whitney & Mackenzie




2 comments:

  1. That is a beautiful "Good bye", Whitney.we have watched Mack grow and become her own unique person but I have watched you grow and become stronger and more confident in your role as a mother. I love you so much, and just as much I love Mack and BJ ������

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  2. That is a wonderful goodbye! i I would really hope to hear from Mack in the future, my name is joaquin, im a 16 year old boy from Argentina and as Mack i have ocular motor apraxia, and i really dont know how i ended up here but i just wanted to thank you for sharing all the experiences that you have lived across your life and really showing mack what really matters: perseverance determination and demonstrating her that if she works hard, she could reach any goal that she would want. that’s what my parrents have teached me, and thanks for that im a really happy person that lives the life that i want!

    hope to hear from you soon!!
    Joaco Larumbe

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