We planned this for months. The girls saved and hung a paper chain countdown.
Of course, like most of us affected by disability, we are prepared to make a change of plans. History has taught us to expect the need for flexibility. I do my best to be proactive in anticipating hiccups, and work to minimize them as much as possible. I just didn’t expect this.
If you know me personally, you know that after we landed in Texas I received word that my brother unexpectedly passed away while we were en route.
Honestly, I don’t even remember how we got our rental van and arrived at the hotel. I was too shocked and busy processing that news. I was also doing google searches for flights back home and researching the cancellation policies of our hotels. By the next day family suggested we stay and come home as planned as they would take their time with planning. In some ways I hated staying and in some ways I was relieved not to deal with making travel changes on a holiday weekend.
We were already tired when we left.
Well, more than our normal tired. The night leading into the day we were flying out, I recognized the sounds and symptoms of strep throat in Ci and ran her to our favorite children’s hospital ER for a test. It was positive. It was also our 31st anniversary. As I loaded her and left Around 12:30 am I said “ happy anniversary” to my husband and I don’t think we mentioned it again for days. I know we did not comment when I finally crawled into bed at 7am for a couple hours of sleep before getting ready to leave for San Antonio.
Once we got ourselves together, we had some wonderful family times!
And I am looking forward to sharing about things that were accessible and things that were not very accessible. After our first visit I can honestly say that Texas is beautiful. Unfortunately we had more issues with Ci and her health.
An old G-tube site started acting up and it was then, as a new antibiotic was called in, that we were informed Texas doesn’t accept disability insurance from other states.
While we were reluctantly willing to pay it out of pocket, we were not eager to see how things would add up at an ER when things just kept getting worse. Ci was such a trooper as she rallied each day. But as her food and drink literally found their way out via a tube site that was theoretically no longer there, we were all a bit panicky.
Turns out I was searching for flights home on a holiday once again,
After some conversations with our doctor, seeing Ci in agony and some quick googling, we determined it was probably cheaper for she and I to quickly pack and head home to our ER. It felt like such a heart break. She was looking forward to the final day of just free time in the pool. She and I left with very very heavy hearts.
Due to a layover and delays we arrived in Philly around 2:30 am and the ER close to 3:30. And due to some things I cannot understand about our medical system, we were sent home with gauze and tape around 8:00am. It seems that the surgery she needs is not considered an emergency and can be scheduled…yup, even when your skin is blistered by stomach acid.
I wanted to share this for two reasons:
- Despite our visit to the surgical center today, we are still waiting for the procedure to be scheduled…soon! And as I write this she is sleeping fitfully on the floor with a new fever and chills. Is it this GI fistula? Her strep returning? Something sinister? We are weary from worry and appreciate prayers.
- authenticity. As social media became bigger and bigger while our kids were growing, I would try to describe people’s posts as their highlights reel. Because they typically are just that. If you look closely at our pictures of Texan adventures you will see shadows of pain, fatigue, grief and illness.
I will still capture and keep those pictures for two more reasons:
- The girls love them. The planning, the going, and the rememberIng are each really special pieces of the traveling to us! Places like Facebook are easy for them to browse back through them.
- We have had a lot of feelings this week. The girls have verbalized the anger, sadness, and frustrations they have felt….which is healthy. But it can be hard not to stay stuck in them. So our pictures help us refocus on the positive and the pleasant.
8Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.