On Monday, Independence Day, we drove to Santa Cruz for the day. If you are on Facebook you might have seen the little video that Facebook automatically made from a few of the pictures on the beach. It does not even tell half the story. Let me tell you the rest of it. But first I just want to plant a seed in your head because its been growing in my mine – its about embracing every moment, there are best days and there are worst day and there are good days and there are bad days and for some of us, our “bad day” is someone else’s good day. But more on that later.
We had fun on Monday seeing the redwood trees and walking downtown Santa Cruz while Hana stuffed her mouth with chocolate covered biscuit that she wouldn’t swallow. Eventually half of it was spit out and the rest was swallowed. Then we went to a tiny little beach near Pleasure Point, about a block from a house that Paul and I rented when we got married in Santa Cruz (well technically Pescadero). To say Hana loved the ocean is an understatement. She was kind of scared and intrigued by the waves at first. Before we even got to the beach she kept going to the railing over the cliff that went down to the ocean. Then, after witnessing the waves for a few minutes she decided it was the greatest thing EVER. She clapped every time a wave crashed. She squealed with delight when the waves rushed over to us. I’ve never seen her so excited and happy. My parents got to witness a slice of this when we FaceTimed with them for a few minutes. (Too bad I didn’t really capture it on video.) She got pretty wet from her diaper on down but was very excited. When we left she kept running back to the stairs down to the sand because she did not want to leave. It was so heartwarming and joyful to witness! It was a good day, maybe even a best day!
Hana had another clinic visit on Tuesday. It went well. Things seem to be going very well. She doesn’t have another cath/biopsy until late July and then the next one is late August. Maybe after that we can move home. We shall see. In the meantime, we can do some day trips to our house in San Francisco! I am excited to get some things done around the house so that we can live there again! The other news from the clinic visit is that Hana’s blood pressure is still too high. We are working on meds to get that down, they increased her diltiazem again. She is continuing to wean off of the sildenafil and the prednisolone. I worry a bit that her appetite hasn’t taken off that much while on the steroid. I’ve heard that its supposed to and it did get better but has now plateaued. I really want to get rid of this NG tube. I want Hana to be eating!
When you spend enough time living in a hospital and then living at a place like the Ronald McDonald House, especially at a place that serves very severe and complicated medical conditions, you get to hear a lot of stories. In some ways it is a comfort to feel “normal” amongst all these families that have experienced very tough times with their children. You see a kid wearing a mask or has a feeding tube or oxygen? No big deal. My kid’s been there. There is less explaining.
After hearing so many stories over the long months I realized that we have it easy. Now, many people reading this might think that’s crazy, that this has been tough and incredibly hard. It has, but its all perspective. Someone’s “bad day” might be my “good day” and my “bad day” may be someone else’s “good day”! I’ve also realized that this does not matter too much. Stress and suffering is still stress and suffering. I’m not saying that all stress and suffering is equal. Life threatening situations are indeed stressful. This has been hard and stressful for us. Paul and I laugh, actually laugh out loud, about the things we used to stress over. I think what I am trying to say is, lets be kind and gentle with one another because almost all of us are experiencing some kind of suffering or stress. Maybe I’m saying it because I haven’t always been kind or gentle. Or I could have done better. I could do better. Maybe I’m saying this because I’d like people to be kind and gentle with me. People have been kind and gentle with me, thank you.
This (hospital, Ronald McDonald House) is a very hard and inspiring place to be. There is both a lot of suffering and a lot of hope. There is a lot of heartache and joy. You see it on the faces of the kids. You see it on the faces of the parents. Thank you for reading and loving and praying and commenting and gifting and sharing it helps bring on the inspiration and hope and joy, and the good days! We need it!
7 thoughts on “The Most Fun, Ever.”
What a great entry. So happy about Hana’s introduction to the ocean. How great is this time for you three? !!!!!!!!!!! Enjoy it all and thanks for sharing your wonderful thoughts. KB
Any day at the beach is a good day. and if the surf is up, it’s a better day.
Hana looks terrific! It is so heartwarming to see her be a “normal” little girl and do everyday things with wonder and joy.
WOW look at the smiles!
I’m talking about Kathleen and Paul.
So, so thrilled to read this and see these pics. Shedding a few tears of joy for sweet Hana. I am so glad she is the experiencing all these joys. 🙂
Love seeing that big smile and the joy in her experiencing the beach and the waves is pure delight. You and Paul have a very different perspective than many people now. Thanks for sharing that piece with us all.
It amazes me how strong you both are and come up smiling like you do. I really wonder if I could be as strong as you are. I met your Mom at PFC on 4th of July and now I see where you get this strength. I’m praying for you.