What if?

What if you just need to cry? What if you just need to write? “But what will I say when I’m held to the flame?”

What if everyone who meets your daughter has been left with a question mark? What if you’re not only navigating new jargon, but realizing you’re navigating a new life? What if on one of the most darkest days you were given some light? What if you didn’t even realize the light was present? What if everyone that came through your path that week knew your troubles because you couldn’t help but speak frustration and anxiety?

What if that day was the day your daughter was diagnosed with cerebral palsy? What if that same week you opened the letter that her Medicaid renewal application was denied? And what if you were less than 3 weeks away from closing on a new home all while your budget just went to flames right in front of you? What if you truly don’t know how you’re going to pay for outpatient therapy, the very reason you put the plan in motion to move? How? How do you pay for the equipment, the prescriptions, the specialists, the MRIs? How do you move forward in the fog of the unknown?

What if all you have left is your faith? To just believe? You have fallen to your knees, but instead of giving up, you pray and continue treading forward. And what if God proves that once again he has been watching over all along? That looking back everything was always aligned. Being honest with your hometown employers why you need to go. The applications of mine that went unanswered, the remote opportunity that fell into place that included a direct transfer of benefits & time off balances. The timing of the Olathe Fire Department offering Talon to join their February 2024 academy, allowing him the time needed to finish the basement in Hays. The house selling, family available to take our split household in for 10-12 weeks. The houses our offer couldn’t compete with, the one that said yes. The fact that we even knew what direction we were heading on the day Emersyn was diagnosed with cerebral palsy, as that direction connected us to Ability KC. The stars were always aligning. Aligning us here. And here is our new home.

If you think you have nothing left, I beg you to believe. Believe in your why. We were this close to the move and all the fear crept in. It takes strength and courage to keep going. I will even go a step more personal and say it’s okay to admit that you need help. I can tell you that you cannot do it alone, so lean on your help. Through it all, do not forget to accept the kindness offered along the way, as it can so easily be overlooked in trying times. It has been beyond beautiful to see the blessings that have fallen Emersyn’s way, our way. Making medical calls and learning her bills are interest free, that payment plans are available feels like grace. Thinking a bill got lost in the mail with the move, but finding out NuMotion was attesting the unpaid amount by insurance. I recently said in a thank you to a dear family friend that their contribution/gift felt like we could catch our breath. They’re acknowledging this mountain range, the ones we’ve conquered and the ones still ahead. I think about the goodbye hugs in Hays – filled with tears by best friends but full support of this move. The surprise care packages we’ve received, the encouraging texts. I think about how Emersyn was able to experience a pre-season Chiefs game at Arrowhead all because sweet Carissa thought of our family & passed along their available tickets. They could’ve sold them, but they gifted them on and we enjoyed the heck out of them! A total dream day experience that will never be forgotten. Seeing and feeling how many believe in us has been magical.

That diagnosis day in April I will always remember so vividly. It was my last post on this blog. And as you can read from above, that week did not get any better. I broke down. I shut down. I doubted and worried. I didn’t read your comments because I couldn’t face it, I was drowning in my own fears and self-pity. But God was busy building. It was that April appointment with Children’s Mercy Rehab Medicine team who guided Emersyn, who guided us to Ability KC. In the midst of our biggest move with even greater stress now added, we were blessed with direction.

Ability KC has been the greatest answer to our prayers. All of the therapies prior have been beautiful stepping stones to land us here, where we are experiencing so much peace and gratitude. Each and every therapist along the way – Becky, Heather, Lisa, Jan, Chloe – had a special reason to be a part of Emersyn’s journey. In January 2023, we started driving every other week nearly 3 hours one-way for Emersyn to start Physical Therapy in Wichita. Her PT was also a special needs mama who dove into Emersyn’s medical journey, helped us form questions back to Neurology and was one of the first to teach us about advocating for Emersyn. By March it was clear between Neurology & her therapist that Emersyn needed more, so we increased her physical therapy in Wichita to weekly sessions. Not even one month later and Emersyn was approved for Speech Therapy in Wichita so we extended those travel days by adding on another out-of-town therapy session. A therapy day for Emersyn led to full, full days, being gone from Hays over 8 hours. So yes, her caregiver team felt the feeling of luxury when PT could be scheduled in back-to-back appointments at the same facility as Speech later that summer. It taught us early on that that therapists will come and go, that kindness continues. When Occupational Therapy was added to Emersyn’s schedule and was available in Hays, we experienced even more gratitude allowing one weekly session without travel. During a time of chaos and constant rotation, these therapists welcomed Emersyn and her involved team. They understood why Mom or Dad weren’t present with our work schedules. The caregivers present were allowed in on sessions so the work could be taken back home. It was a hectic time and I can’t believe the miles my mom & Emersyn tracked, but we’ll always have fond memories of those crazy Wichita therapy days.

So now, almost four months following our move to Eastern Kansas, it’s been the most incredible reward to have been referred to Ability KC – a one-stop shop like we’ve never seen before and we’re hardly 35 minutes away. By being connected to Ability KC, Emersyn has a primary Physical Therapist, Occupational Therapist & Speech Language Therapist. We have help through a social worker and a nurse on staff. Emersyn has a rotation of therapists & technicians giving her greater exposure of trust building. Through Ability KC, she has been linked with AAC training and they are leading us through the process of obtaining Emersyn’s own designated AAC device. When we bring up concerns, her therapists are right there exploring ideas to take back home or helping us navigate. They validate those concerns. They are right there advocating for us, with us. They’ve become friends to our family, similar to the primary nurses during Em’s NICU journey. They’re a part of Em’s constant. Her PT has been able to connect us with Hanger Clinic (on the floor above) to get fitted for new AFOs and available for day-of questions – it’s common for us to wave hello to Richard on the therapy floor! They’re connected with NuMotion who has already come TO US while at Ability KC to fit Emersyn for a collapsible stroller. It’s unbelievable to be taken care of by so many. It might not make sense to most, but to have these fittings while at therapies is such a blessing. Having someone come to you? I didn’t know it could be like this. It’s one less call I’m making. One less appointment I’m scheduling, we’re traveling to. That is a wonderful gift for the never ending demands of a special needs caregiver. Emersyn soon will be going through serial casting, something we have never heard of prior, but only look forward to expanding on through her experience. We trust Ability KC. Hundreds have seen the video of Emersyn walking on a treadmill while harnessed. The equipment, all that Emersyn has access to, it’s been unbelievable. Have I said that already?

So much of this is new to us, well all of it feels new to us, but we have felt absolutely blessed with Ability KC. This is everything we prayed for and more. Direction. Understanding. Acceptance. Every day we’re there we see families that have endured far more medical hardship than we’ve ever known, but it is incredible to be around such an inspiring place. We didn’t know Ability KC was going to be a godsend, the light from a very dark day, but they have been instrumental and monumental in Emersyn’s journey. Ability KC, thank you for being a game changer. We will always, always shine the light on what your team has done for our family.

And to you, Emersyn Charlotte, keep shining.