As I typed part of this, I was sitting on a screened in porch with the perfect night temperature, listening to music in the background and fountains splashing. It was indeed a perfect night to sit outside.
We have known for awhile that we were making a trip. But we didn’t talk much about it. We knew that if we shared, we would get unsolicited advice. Some would say that’s the dumbest thing you could do! Others would have encouraged us to go. And to be honest, we had very mixed emotions about going. So the advice would have made us question and second guess ourselves and that was stress we chose to avoid. We are super sad that our sweet friends were not able to take their vacation but we are super grateful they offered their condo to us!
The trip to Florida was killer for Zine. We knew it would be difficult but neither of us realized how difficult it would be. You never know how much you use your core muscles until they don’t hold you vertical when you go around a curve or hit the brakes. And that’s exactly what happened. Neither of us could have predicted how incredibly hard it would be. It will indeed be a LONG time before we go anywhere again. In many ways, the time away was very bittersweet recognizing that going was becoming way too difficult.
When you have been under the stress we have been under, it affects the dynamics of relationships. So it has been good to be away together. We were very intentional about entering each other’s worlds and enjoying one another. For just a few days, there were no home health nurses, there were no doctors, there was an escape from the reality and details of normal life. We did a lot of resting. And each child we planned something special for while we were away.
—Chloe was the first child to get her special day. We painted together red, white, and blue paintings. We tie dyed shirts together. And I introduced her to the spa! That last adventure definitely took her out of her comfort zone. The last words we would use to describe Chloe would be a girly girl.
–There was something we desperately wanted to do. We wanted to take Krisann to Disney to see the Princesses. Zine was simply not able to actually go but I took Krisann one day to Disney and we enjoyed it together. It was only 97 degrees in a park with thousands of people. But she finally got to meet some princesses which will be priceless memories. Sad her daddy didn’t get to go but at least he was ready to listen when she got back to condo! So glad that he at least got to see the joy in her eyes!
–We wanted to do something special with Conner as well. His time with us is short! He’s about to fly from the nest! But God gave me the perfect idea. You see Conner has always been a Stitch fan. So what better fun than to have breakfast with Stitch. And to get your very own Stitch ukulele and to watch Stitch take your ukulele and lead a parade of big and little kids around the room. He was so surprised. He had no idea what was going to happen! But I think it was pretty special to him. Zine did go to breakfast with us but it wiped him out!
It was good for Zine and I to be away from home. Our emotional states have been a bit on the emotional side. We have had some big arguments, lots of questions about the future, etc. Our relationship struggles at times and it’s been good to get away and remember we really do still like each other.
It has brought heartache as well.
–When you realize that you don’t have the core muscle strength to keep yourself upright in the car seat or upright in your wheelchair with bumps and turns, that is heartache.
–When your hands become significantly affected by the disease, it brings heartache.
–When you can’t go to Disney or even the pool, it brings heartache.
–When something as simple as going out to eat wears one out, it brings heartache.
But we have a choice to make…we can focus on the heartache or we can focus on the happies. So we will for today focus on the sweet memories we have made. Fourth of July paintings, mom learning to play Smash Up and ruining a win for dad, catapult building and catapult wars, smoke alarm going off because every oven is different of course, Chloe coming up with a pun for Krisann being a dressmaker in a play with Belle “that’s fitting for her”, Ohana breakfast, princesses, brownies at midnight, pizza at almost 1 am, photo scavenger hunt with two wheelchairs, a lizard making Krisann scream, a bat scaring Chloe, and the list could go on. There may never be another family trip but there will be memories from this one. And the impact it had on our family dynamics, we are especially grateful.
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| After a scavenger hunt! |
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| Zine’s reading spot! |
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| Mom learns to play Smash Up! |
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| Beautiful children! |
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| Just a little fun at the pool. |
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| Crazy kids! |
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| One of our last projects that we did together! |
So glad you went wild and went on a vacation! Despite the difficulties, it's obvious you made great memories while there
Memories are forever and this is something your children will always remember. I'm so glad that you were able to go despite all the hardships. Your family is amazing in having adapted to life with the hardships and just going on. I admire you all.
I had put a lot of thought and planning into this trip! I was so glad it turned out to be sweet time together!
Nothing to admire! Just putting one foot in front of the other and making the best of the situation we have been given! But thank you for your sweet words of encouragement! I pray that my children will always remember!!