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The Oxford dictionary defines the word birthday as “the anniversary of the day on which a person was born, typically treated as an occasion for celebration and the giving of gifts.”

My child doesn’t care about gifts or balloons.

Age isn’t the same in our world.

Society views age with progress. A 3 year old does more than a 2 year old, a 5 year old can do more than a 4 year old.

Neurotypical children can’t wait to be a “big kid” and do “grown up things.”

Although birthdays in our home are filled with joy, the birthday song and a treat she loves, they are also filled with grief. A reminder of the milestones not met, the cognitive age and the skills we never imagined we would still be working on.

The world has expectations and societal

norms as you grow older. It is expected that a baby cries in a store when they don’t get what they want. But the looks given when that individual is no longer a baby aren’t met with the same grace and compassion by most.

Gifts are another hard part.

Audrey can’t tell us if she likes a new character or wants new clothes or a game. Her interests don’t change that often and when they do, it’s usually because we have exposed her to something new over and over

again.

Do we want to celebrate her, Of course! We celebrate her every single day!

But the actual days leading up to her birthday are filled with mixed emotions. One step closer to a future that we aren’t quite sure how to prepare for.

We will continue to celebrate her in ways that work for our little family.

Next Tuesday we will shout it for all to hear that our silly, sassy, beautifully amazing girl is ✨9✨

I have been thinking a lot lately about how much I have grown as a mom these past few years. I use to focus on Audrey’s diagnosis, wanting to know all the details of her genetic makeup and how to get her to the next milestone. I have slowly come out of the deep dark place I was once in not so long ago. This was done intentionally, lots of hard work (individual therapy and group coaching), surrounding myself with moms who live a similar life and viewing as many accounts and platforms out there regarding parenting a child with a disability. There is still hard. I am a work in progress. There are still sad days and moments. But what I’m realizing is that my focus has shifted. I have more realistic expectations, I have pulled back on specialists and therapies that were causing more stress than help… And let me tell you, it is a beautiful thing.

I don’t know where this life is going to take me in the near future but I do know that I want to be that listening ear for other moms. Some days I don’t feel strong enough to help anyone else but the truth is, anyone living this rare life has a perspective someone can relate to. I hope to be that person. That is my New Year Resolution.

#DisabilityParenting

#KickingCASK

#AudreyJo

#microcephaly

#CASKGeneDisorder

#SelfGrowth

Oct 18

written by Rachel Alves

Over the last eight years I have learned that this parenting gig is not for the weak.

Leaning on others is the only way to survive. This may look different for every family but at the end of the day, “It takes a village” is a phrase I very much understand and believe to be true. My village is my community. Although I am fortunate to have a loving and supportive family, the community I have as a mom looks a bit different through the lens of a caregiver.

When I became a mom to a child with a disability, my community morphed into something I never knew existed.

Community in my case is often women I have never met in person. Women from around the world who understand my struggles, who get the grief and exhaustion. Moms that I can laugh and cry with.

They show up for me on my worst and best days and cheer my child on from across a screen. They check in on hard weeks full of appointments and meetings.

A few months back, after a particularly difficult week, there was a knock at my door. To my surprise there were sweet treats and flowers delivered. Someone who lives in a completely different state took the time out of their busy and hectic life to think of me and to simply brighten my day. I was speechless and felt so appreciative of their kindness.

These strangers who started off as being moms that I could relate and connect to over our children have become my lifeline, my best friends. Endless text message threads, inside jokes, and someone to reach out to no matter the time of day.

My community checks in when they haven’t heard from me in a while. They empathize and rally with me.

Women that gather from all walks of life nodding their heads in agreement of understanding, not pity. The ones I tell my deepest darkest fears to.

A mom retreat organized by We Are Brave last May was my first experience of this face to face interaction. It was something I longed for but didn’t fully realize how much I needed.

Hearing others struggle in similar ways was healing. My favorite part of the entire weekend was when a few of us walked for hours on the beach together. We didn’t discuss anything in particular but the ease of that afternoon gave me so much relief.

I enjoyed hearing their ways of navigating particularly challenging conversations with school staff, inventive equipment hacks for more accessibility, and genuinely enjoyed just laughing with them. I came home with a full cup and heart knowing that I truly wasn’t alone.

My community is filled with support and kindness, compassion and connection. No judgement. Only grace, words of wisdom, and solidarity.

In a world where I often feel isolated, my community lifts me up. I feel so lucky to have We Are Brave Together as part of my community

Tomorrow I will dress my beautiful 8 year old child in her Halloween costume. She didn’t pick it out or give me any clues as to what she wanted to be.

You see, my daughter loves books about holidays, loves when we talk to her

about traditions and characters and she definitely loves a good chocolate treat! The actual day of the holiday though isn’t something she quite grasps the concept of. We usually can’t participate in the “traditional” activities for many reasons. Maybe one day we will but for now we will eat our regular dinner and get ready for bed like we do any other day.

This use to wreck me. Put me in a funk for days.

I would be lying if I said it doesn’t sting to see families experience these traditions.

But this year I followed her lead. I didn’t force the carving of pumpkins or endless trunk or treats. I didn’t say yes to activities that don’t make sense for our family.

I WILL dress her up for school and talk to her all about the fun she will have with her friends in her class. I will read her stories like always and then kiss her goodnight. As I watch her on the monitor until she falls asleep, I will think about the kids trick or treating with neighbors, then I will turn off our porch light and go to bed myself.

My precious girl. My unicorn.

You are so loved and every night I get to tuck you in, I will count that as a good day.

Audrey has two days of the new school under her belt. We survived them but I can’t shake the feelings of the unknown as I drop off and pick up my girl each day. Is she getting enough food and water? Are they making sure she’s getting enough movement? Are they able to connect the dots of her frustration? Is she making friends? Did she get that bruise from equipment she was in? What does she love and maybe even hate about her new routine?

I did all the things to set her up for success. I filled out an “about me” sheet for her staff, I write notes and emails with questions and clues into Audrey’s world. But the truth is, it will never be enough. I may never know the happenings of her days and this stings. I have learned to sit in that sadness and then move on but sometimes the sting feels really unfair.

These worries and thoughts consumed me this week. They will continue to for quite some time if I’m being honest.

I know the school is doing the best they can and I’m sure I will grow to adore this staff and community. But being a mom to a child with a disability is filled with a longing for answers and a strong hope that you end up with people in their life that adore her almost as much as you do. You trust that they care for her and see her for all she really is.

Life comes with so many highs and lows that sometimes happen simultaneously. This weekend we watched our good friends get married. It was a day full of laughter and joy. While getting ready for this blissful occasion, I read the horrible news that another one of our CASK warriors lost her fight in this world. I have nothing but love in my heart for this mom and sweet girl. It is an unbearable thing to imagine as a parent. It’s not supposed to be this way. But yet in our community and in the disability bubble we live in, I see it much too often.

I’m sending all my love to this family as they navigate their new way of living. I wish I could help to ease the pain but the only thing we can do is honor our warriors in the best way possible. Keep fighting for the life they deserve. Celebrate any win no matter how small and never take for granted that this life can change in an instant.

I’m going to continue to advocate the best I can for Audrey, hug her even more than I already do and make sure she feels my love daily.

We will keep #KickingCASK one smile at a time.

This holiday season I can honestly say that I had the biggest mindset shift. It took me 7 years to get here but I’m so glad to be in this place in our journey. My expectations were realistic going in to the holidays and that made such a difference. I brought the iPad, didn’t force food Audrey wasn’t comfortable with and didn’t push for her to open gifts this year. It brought a great sense of ease. Although the days still sting a bit, I was able to appreciate Audrey for exactly who she is in this moment. I am beyond grateful for a family who loves hard and helps when they can. Most of all I am feeling so fortunate to have a medically healthy child. Seeing our CASK warriors in and out of the hospital hits hard and I’m wishing them all peace and love through these difficult times. Feeling extra grateful for the simple things. Audrey is non stop and especially during school breaks it’s hard to feel positive when we are taken away from our routine. But we get through it one day and laugh at a time.

This year has been a huge year of growth for me personally. I have met amazing moms across the globe that inspire me daily. The friendships I have made even though it’s mostly through text threads and social media have saved me on the hard days and help celebrate the good days as well.

Some new things Audrey tried this year:

-Her first ride on a bus to a field trip with her class!

-Found a love for cheeseburgers.

-Getting better and more advanced on her AAC device every day!

-Expanded her movie choice selection.

My Goals for the new year:

-Embrace the joy.

-Find more local help that I can train to be with Audrey for occasional babysitting needs.

-Continue to work on myself so I can be the best mom for her.

-Turn my focus onto local advocacy. Our schools, parks and grocery stores need more accommodations. I am hoping to advocate for progression in this area!

We are in the last stage of getting a therapy dog so we may have a new addition to our family in 2023!

And also not so patiently waiting for the referral to go through for Audrey’s very first wheelchair. Her mobility continues to progress slowly but we have noticed her stamina is not quite there. We are hoping that a wheelchair can give her body the rest it needs while still being able to be out and about.

Wishing everyone a healthy start to 2023.

#KickingCASK

About a month ago I found out that Global Genes was hosting an in person conference in San Diego. I was just going to sign up to learn virtually but after discussing with my husband and checking flights, we both decided I would just go for it! I am so glad I didn’t let my fear hold me back because this experience has been something that will forever change me as a mom and advocate.

Meeting contacts that are so very generous in sharing their resources and experiences has been the most overwhelming gift. To say I have never felt more seen would be an understatement.

What I have learned most from this experience is that I truly feel like I am meant to bring awareness to this rare journey we are on. Some of these individuals started out just like me, a mom lost and a bit frazzled by a life situation nobody chooses to be in.

What was most amazing is the theme of kindness and compassion. I am certain I have created life long relationships during the last 2.5 days.

I’m so grateful I came and thankful my husband encouraged me to go even though I was a bit nervous to leave Audrey and step out of my comfort zone.

This evening I am going home with a stack full of business cards and resources to help not only my family personally but also our CASK Gene community.

Global Genes did an outstanding job providing seasoned speakers that reach this rare community in ways I never thought possible.

I can’t wait to keep #KickingCASK for Audrey and continue to connect with these individuals to help me navigate this rare journey we are on.

I was surround by so many wise words but something that really hit me today was my favorite quote from the preventing caregiver burnout panel:

“Your worth is not measured by how well your child is doing” -Jessica Patay