January 2019

Wow. I can’t believe my baby is four years old! That means we have had four years of her smiles, giggles, cuddles and lots of good days. It also means we have had A LOT of sleepless nights, doctor visits, too many hours of therapy to count and many many hard days.

One thing I have learned these past few years is that there is no right way to heal from a traumatic situation. No magic amount of time. Moving forward, no matter how slow, is all that matters. Some people are proactive, some are in denial and others (most likely the majority), are a mixture of the two.

There are mornings I wake up confident that I have made all the right choices to making sure Audrey thrives. Other days I feel like we just received the diagnosis, unsure of what to do next.

This past month has been full of change. New school, new therapists, a whole new schedule for myself and miss Audrey Jo. It’s taken a bit to get acclimated to it all but one thing that doesn’t ever change is how amazingly resilient my child is. She rises above and continues to surprise me every day. I am so thankful for those moments because without them, I would definitely be more in that denial stage as her parent.

Finding a balance between school and all her extra therapy hasn’t been easy but we are all adjusting.

Some things I’m focusing on in 2019:

To not be afraid to say no to things. If it makes me uncomfortable or doesn’t fit my families needs, no is the only answer!

To not be too hard on myself, or Audrey! Life happens… some days are going to be better than others!

Focus on little things that need improvement. Incorporating one new goal that I do once a day with Audrey versus looking at all the things that we need to practice on. (This is a hard one!).

Continue to accept our life as it is and try my best to not compare.

As always, keep #kickingCASK the best way we know how!

Unknown's avatar

Author: Rachel Alves

Hi there! I am a special needs mom to a beautiful, sweet girl. Audrey has a mutation on her CASK Gene. This is a rare genetic disorder that effects her globally. It has caused a seizure disorder as well as gross motor, fine motor and speech delays. A Microcephaly diagnosis comes along with it as well. Our last 8 years have been filled with therapy, learning about our daughter's disorder and also learning to cope while finding joy. Thank you for taking the time to read about our journey. For more information on the CASK Gene, please visit my Instagram @alvesmomkickingCASK.

13 thoughts on “January 2019”

  1. Another insightful blog Rachel! I like your 2019 areas of focus especially the one about not being so hard on yourself and doing what is best for your family. You ARE doing all the right things! Audrey’s smile and contagious giggle is proof of this! Love you and that amazing little angel❤️❤️

    Liked by 2 people

    Reply

  3. Great post Rachel. Your family is amazing! You and Matthew are doing all you can for Audrey each and every day and she is thriving. It is always good to have goals. We love love all of you! ❤️

    Liked by 1 person

    Reply

  5. I love to read the post that you write on about the progress that Audrey is making. I love to see the happy face that she has when pictures are taken of her. I keep Audrey in my Prayers always.
    Donna Suender ( I was Claudette ‘s classroom Aide many years ago.)

    Like

    Reply

  6. Audrey chose you and Matt as her parents. There is a reason why and you two are making sure Audrey is thriving and Audrey is giving you so much more ❤️ No ones knows what direction our lives will travel but you seem to have the map to Audrey’s happiness…

    Like

    Reply

Leave a comment