One Year Later

It has been exactly one year since our family received the most bittersweet information that has rocked our world. One year ago, sweet Hailey was officially diagnosed with Jordan’s Syndrome.

This diagnosis changed us and shaped who we are today.

As soon as we got the diagnosis, we were extremely proactive. We pulled Hailey from her old daycare and moved her into my husband’s hospital daycare where she is also receiving daily therapies.

The people around us also made moves without even flinching. Her current daycare immediately enrolled her, her therapists scheduled her immediately, and my husband’s colleagues and friends, all made it happen and helped wherever and whenever possible.

Our Facebook family welcomed and provided our family with information about Jordan’s Syndrome, openly shared information about their families and children, and provided love, support, and kindness.

There was no time to waste, no time to grieve, just time to get Hailey what she needed.

It didn’t fully hit me until the next morning. I remember feeling so disheartened- it felt like a ton of bricks were laying on my chest. I remember the stinging hot tears streamed down my face when I awoke. I felt paralyzed by fear, anxiety, and sadness.  However, I was grateful that we had an answer. It was an answer that raised more questions, more wondering, and more unknowns. But at least, at 8 months old, our child would not be un-diagnosed.

So many things did change in those moments. But what did not change, was our steadfast love and concern for Hailey. Our goal did not change- we wanted to ensure that she would have the best of the best.

When I reflect back on those first few days, even weeks, I think about the several roles and different hats I have played and worn; a grieving mother, a hopeful mama, a wildly enthusiastic advocate, mom to my neuro diverse and neurotypical children, wife, teacher, and friend.

It is funny though- I always talk about how crucial it is to not focus on milestones, missed milestones, or comparing Hailey to anyone but herself; yet here we are. An entire year after her diagnosis, and I am celebrating this particular milestone.

We have grown so much as a family in just a year’s time and it is so important to bring awareness to that. We have learned a great deal about this world that we have entered. Hailey has taught us what it means to be unique and accept others’ differences, and Noah has shown us what it means to love his sister unconditionally. My husband and I have learned that our relationship has only grown stronger because we have surely been tested- what we have discovered is that we can do anything together and navigate hardships, as long as we are side by side.

Sure, we have had many bumps in the road and many moments of uncertainty. Sure, there have even been times where we have felt such sorrow and sadness; but we have chosen to focus on the good. We have chosen to be present in those promising and blissful moments.

The moments when we dance around our kitchen to a song that brings us joy; the moments when Noah doesn’t know we are watching, and he is holding Hailey’s hand, singing to her, or when he is simply sharing his toys. Those are the moments that show us how blessed we are.

It is the moments when I acknowledge what an amazing father Andrew is and a supportive husband he has been throughout our lives, but especially during this wild journey.

It is in those moments that we embrace when we know how fortunate we are to have a devoted and compassionate family- our parents and siblings, who have been cheering on our Hailey the entire way.

It is the moments when our friends, our truly amazing friends, show up for us in ways that we never expected, but are so grateful for.

And without these people; Hailey’s teachers, therapists, and team of doctors, we wouldn’t be able to see the amazing progress and strides she has made this year. It is these people who we are indebted to- they have unknowingly created moments for us that show just how strong and determined our baby girl is.

So today, we celebrate a year of growth and understanding in our Hailey, our son, ourselves, and the people who we have chosen to surround us.

But today, we celebrate you, Hailey girl, for your resiliency, your beauty, the joy that you encompass, and the positivity and hope that you bring our family. Today, we celebrate how far you have come, and we cannot wait to celebrate your biggest milestones yet.

We absolutely cannot wait to celebrate the day that you are cured.

Until then, we celebrate everything else that you have achieved and continue to accomplish. Hailey Girl- continue to wow us with your progress, awe us with your beautiful spirit, and show us what it means to be happy and cheerful even when adversities are standing in your way.

Happy Diagnos-aversary to you baby girl.