On our way...
Today I write to you from our little living room. Paul plays, Ruby barks, and Dan’s at work. Today and for a while now being a heart mom has been tough for me. I sometimes can’t believe this is our life- the tubes, the medicine, the machine, the mickey button, the worry, the hurt, the hope… I have many friends who are heart moms and their perspective of living for today and hoping for tomorrow is one that I try hard to emulate. Sometimes I get it right and sometimes I don’t. But that’s motherhood, isn’t it? That’s how it is for all of us, most of us I think.
Tomorrow we travel to CHOP. They are 99% sure that on Friday we will do an MRI to get a good look at Paul’s heart. I am praying for a miracle and every time I say that to someone they look at me like I have six eyes. I don’t have six eyes and the two I have don’t work all that well but I have a whole heart in the physical and emotional sense and I want that for him, too.
I want him to live and to really be alive. I want him to know love like I do, to run, to play, to feel the gift of connecting to God and to others and to know what its like to accomplish something really great. Whomsoever he becomes, I will love him but I hope he gets to experience the magic of college (side bar- students- if you have yet to have your “college day” that I told you to, now would be a good month) and the wonder that sound learning communities and life long friendships formed from college provide. I want him to be alive much longer than I am and when I pass on, I hope he reads this and knows how very much I am privileged to be his mother and how very hard I am trying to have such a life in spite of his condition.
So, our CHOP schedule looks like this:
Wednesday- Arrive spend time with family
Thursday- Appointment with Dr. Rychik; testing and visiting
Friday- MRI; preliminary results, meeting with our surgeon
Saturday- family time and home (hopefully)
Keep in mind, these are all routine things that we are choosing to do for Paul. There is not an emergency (that we know of). This is a scheduled, planned and elective visit. We feel its best and so do the Docs at CHOP to get a good look at what’s happening in there and the MRI will do that.
Please pray with us:
That Paul stays healthy
That Paul’s heart and lungs look miraculously good
For healing for his heart and ours
For tremendous results all around
For us to be alive here and now
We will post back on this blog with updates. We love and appreciate each of you. Keep loving, keep believing, keep living.