It is a serious mix of emotion....
My kids are off all week, I don't have to work...wouldn't it be fun to whisk away on a plane somewhere tropical, hot...where there are beaches or swimming pools and I could sip on some sweet fancy drinks with umbrella's. Sometimes it feels like everyone around me is doing just that...making memories with their families, feeling the sun on their skin, enjoying time off.
In my world I never get a day off...I have to get up at a certain time to make sure I keep Hudson on schedule, I can't jump on a plane, or surprise my other two kids with a fun trip to Disneyland or Hawaii or any place other than WA. We can't go farther than a drive in the car for the day. Hudson is so medically fragile, I can't take him anywhere really. Home is the best and safest place for him.
Monday was our first day of break...I spent it with Hudson at Seattle Children's Hospital. Hunter and Hailey were happy they didn't have to go when I offered to let them go to "Spring Break Awesomeness" A teacher from their school is doing a day camp throughout the week and all the money goes to their sister school in Liberia.
Day two was me making an attempt to surprise my kids with something I thought they would enjoy. It was a pretty spring sunny morning so we drove to the Harbor, parked and walked along the harbor...the air was crisp, and the sun was shining and it felt glorious!
We walked to a little diner in the Harbor and had breakfast. Hudson was with my mom that morning, so it was a little one on one time with two of my favorite little people. On our way home Hailey had said something pretty profound, and strange in a way.....
"I think we are lucky to have a sick brother with a disease because we don't have to worry about spending money on expensive trips, we can just stay home and do fun things together here."
I am not sure what exactly she meant by that. I did tell the kids it is not where we go or what we do, it is just being together that matters...because on the flip side of feeling sorry for myself that I never get a real break or that my kids have never had a real vacation in the last 5 years...is that I would never ever want those things because the price would be too high...
If I could keep Hudson forever and do what I do on a daily basis for the rest of my life, I would without hesitation sign up. He is my world, he is a living angel that I have been appointed to, to love on and care for the rest of his life.....however long that may be. Every day is a gift. Every day I am grateful for his presence on this earth....I would bask in his presence for the rest of my life and never bask in the presence of an exotic beach, or a trip to Europe, or any amazing vacation that I could dream up....
It is because I know that there will be a Spring Break that may look so much different than today, that I am able to be grateful for this spring break at home with all 3 of my kids. As sick as he is, it is with a grateful heart that I can say he fights on, and continues to go to battle each and every day as he is so strong and such a warrior. This life with mito is so uncertain, and so scary at times. I see Hudson struggling more and more with respiratory issues, my heart aches to see what he endures on a daily basis....When I think of the possibility that I may one day have to live without him... I fall apart. It may seem cold and heartless to think those things, but it is the reality of this degenerative disease. Every day is a gift....every moment, every snuggle, even the suctioning, the pushing of meds,thoe hospitalizations, the lifting and carrying, the diapering....all a gift, because one day I will mourn doing those things....and to me that seems unbearable.
So....
I imagine his legs walking one day, running....I imagine his hand grabbing mine.....I imagine the feel of his arms around my neck....I imagine what a kiss from him would feel like.....I imagine the conversations we one day will have.....
I layed my head down last night and prayed for him as I always do....I imagined Jesus touching his frail, broken body and I imagined healing....I prayed and asked for healing as I have the last almost 6 years.....and then I prayed if it is the will of our Father.....and I know in my heart this is how Hudson must live on this side of heaven. He continues to teach though he can't speak...he is one amazing little boy.
I continue to try to do my very best balancing parenting two healthy vibrant kids and one very sick child...all while doing it as a single mom. Thursday I am taking all three of my kids to Olypmic Game Farm in Sequim. Hudson can go as we stay in the car and drive through a "zoo" of sorts. Hunter and Hailey are super excited. No, its not Palm Springs or Disneyland....it is just me trying to make the best of this life we have been handed....trying to teach my kids the value in what we have and showing them how to find joy in what we have been given. Whether they ever know spring break to be different than they do today, I think Hudson continues to teach all of us how to be grateful for the simple things in life.
