Traveling with any baby is a challenge, but traveling with medically fragile children is even more difficult. The amount of supplies we must bring is daunting and it isn’t the easy thing to do.
Both Brennan and I love to see new places and experience new things, and this is something we always imagined that we would do as a family.
Now that our time with Tori may be short here on earth, we decided to allow her to experience as much as we can while she is still doing so well.
So, what does it look like?
First, everything we do is based on how she is doing and what she can tolerate.
We do not pack our schedule – we allow for plenty of rest times.
Our trip to the Jersey Shore is a perfect example. We did one big thing a day, and if we went out to do something else it was only after several hours of relaxing at the condo. We do not push her and we allow for plenty of downtime to ensure that she is content.
She does so well no matter where she is, and we can attribute that to how much she has traveled since birth.
Second, each experience we choose is something that will stimulate her and that she will enjoy.
We know she enjoys looking at colors and lights. We know she enjoys music. She likes being outside (unless it is too windy). We avoid situations where it may be overstimulating for her, and we always take the weather into consideration.
Third, the Bucket List is just as much for Brennan and me as it is for Tori, but it is still all about her.
If she were not able to travel well and experience these things, we wouldn’t do them. She does SO well in the van now – most of the time – and we think through each travel experience to ensure her comfort and enjoyment.
Without a miracle, there will come a day when it is too difficult on her to travel, so we are doing as much as we can now. If we complete the Bucket List and she is still healthy, we will add more!
Having this list has reminded us to focus on living with her and making memories.
It is so easy when you have a sick child to want to stay at home and never do anything fun – this forces us to pack up all of her supplies and equipment and DO things as a family, to create memories and live life together.
The Bucket List has made the past six weeks so much fun and we can’t wait for what’s to come in the next six. ❤️