A New Season of Support
In support of
The Burkett Family
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The Burkett Family
With David's job being so intense (managing a big house lift/foundation restoration project) this month, we've decided to have Braven and I fly to stay with my parents in Colorado through the end of September.
It's a big risk, being away from our Children's Hospital team, the comfort of our home and not getting to hug David/Daddy when he gets home at night.
But the trade off of being with Nana and Papa and Aunty/Uncle/cousin and having their daily support (allowing David to take whatever overtime he needs to complete the project without stressing about us being alone at home) is something we decided to pursue.
We are feeling nervous about how Braven's head will do with the travel overstimulation as well as the very intense humidity and elevation change (from our sea level townhouse to Nana and Papa's Colorado home at 6000 ft). I have special medication we have found works well for this change but Braven does not. We will be 10 minutes from a large Children's Hospital thankfully. I am working this week to get extra meds filled, our emergency room folders update and care plans laid out with our care teams incase we need out of state care.
Finally, I have a lot of nerves around traveling with Braven alone. Thankfully my parents will make the return trip with us, but flying down is on me. We will utilize the Sunflower Program in each airport to access extra support for invisible disabilities and I have created a request for assistance through TSA Cares. We may be able to get an Gate Escort Pass for David as well, but won't know that till day of.
There is soooo much to traveling with invisible disabilities. It's a time you want to make your disability visible so you don't have to fight as hard for support and so others may have more patience with you. I ordered us Traumatic Brain Injury Survivor shirts and we will both wear the sunflower lanyards for the Sunflower Program in the airports as well as yellow Fall Risk alerts.
It would be nice if all my brain had to think about was entertaining a 3 year old in the airport and on a plane. Haha. I can't fathom how luxurious that would be! Even with the overwhelm, nerves, sadness and worry about being away from David, we are feeling excited and hopeful for this next little season ofbunique support.
And hopefully David gets some rest, a break from the weight of constant caregiving, and some fun social opportunities while he is home. He deserves some much needed introverted TLC!
It's a big risk, being away from our Children's Hospital team, the comfort of our home and not getting to hug David/Daddy when he gets home at night.
But the trade off of being with Nana and Papa and Aunty/Uncle/cousin and having their daily support (allowing David to take whatever overtime he needs to complete the project without stressing about us being alone at home) is something we decided to pursue.
We are feeling nervous about how Braven's head will do with the travel overstimulation as well as the very intense humidity and elevation change (from our sea level townhouse to Nana and Papa's Colorado home at 6000 ft). I have special medication we have found works well for this change but Braven does not. We will be 10 minutes from a large Children's Hospital thankfully. I am working this week to get extra meds filled, our emergency room folders update and care plans laid out with our care teams incase we need out of state care.
Finally, I have a lot of nerves around traveling with Braven alone. Thankfully my parents will make the return trip with us, but flying down is on me. We will utilize the Sunflower Program in each airport to access extra support for invisible disabilities and I have created a request for assistance through TSA Cares. We may be able to get an Gate Escort Pass for David as well, but won't know that till day of.
There is soooo much to traveling with invisible disabilities. It's a time you want to make your disability visible so you don't have to fight as hard for support and so others may have more patience with you. I ordered us Traumatic Brain Injury Survivor shirts and we will both wear the sunflower lanyards for the Sunflower Program in the airports as well as yellow Fall Risk alerts.
It would be nice if all my brain had to think about was entertaining a 3 year old in the airport and on a plane. Haha. I can't fathom how luxurious that would be! Even with the overwhelm, nerves, sadness and worry about being away from David, we are feeling excited and hopeful for this next little season ofbunique support.
And hopefully David gets some rest, a break from the weight of constant caregiving, and some fun social opportunities while he is home. He deserves some much needed introverted TLC!
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Dahlwendy