You never get used to it. The reality that is ours every day when we wake.
It's not a sight that I thought I would ever have to see.
It's not a life I envisioned I would be living.
But you do adjust to it. You do learn to cope in it. You do learn to rise up and sort of persevere through it. You do learn to love differently. You do learn to accept things more naturally. You do learn to let go and live in it instead of fighting so hard against it.
I'm sad far less often, although the days and moments do come. They don't overtake me, as I can now experience them swiftly and with some ability to cope with the sadness.
For the most part, though, I have found that this is truly a joy that is unspeakable.
It's a love journey.
It's a love journey.
Between two parents who are desperately fighting for their child every day and for their marriage in the midst.
Between siblings who love deeply, but know more than they should.
Between mom and baby; an affair like none other. An intimate knowing that goes beyond words that have never once been spoken.
Between daddy and daughter; a precious bond that has grown and changed a man into someone he never dreamed he'd have to be.
This love journey has expanded us. It has shredded us from the inside of who we are and removed things that don't quite matter anymore. It has enhanced us, made us aware of people, circumstances, and things around us. It has quickened us to a life that is enriched with simple things. A charming reminder that in it all, this is all we have.
This is typically the time of year when I enjoy unplugging from the world. I turn the computer off, check my cell phone less and tune in to the great gifts I have been given.
This year is no different. I see the vibrant colors surrounding our home and inside I feel a warmth that is irreplaceable. It's a time in which I reflect on family, home and all that matters intertwined within them.
I have been sick for the past two days and have been in bed. I have been sleeping and having terrible nightmares. But in reality, they reveal things that could actually happen and may some day be said. It's an awful thing to try and rest but not to find it.
I am so proud of this body of mine and I never take one day for granted. It's capable of such great and powerful things. I can keep a home, take care of my children, exercise, sing, dance, and live with little restrictions. That is a true privilege to some and I won't ever forget it.
So I'm fighting sickness. And I feel awful.
I signed up for therapy and went.
It's going to be good. It is something I have to do.
I feel great about it and honored that I can do it.-one hour every couple of weeks that I can unload and regroup.
I went to the grocery store this week, after making a meal plan and I didn't feel anxious.
I even spoke to familiar people as they asked how we were and smiled kindly.
I plan to cook for our family this weekend. This is something that I haven't done in so long because of so many different things. But I'm so ready and I can't wait to bake with the kids.
Sometimes the sadness comes but it is no longer stealing my joy.
My joy and the sadness have united in many ways and I can now find a kind of peace between them.
It's a beautiful thing.
Please pray that no one else gets my sickness. Please pray for several families experiencing loss in the rare disease community. Please pray for a cure so that children in the future can have a life unaffected by disease. Please continue to love on us as you always do because you truly keep us going.
"So with you: Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy."