I Miss....

I am going to be real for a few minutes. Please bear with me. The last couple of days I have allowed myself to feel... allowed myself to grieve. What? you may say. Well, I am grieving over all the dreams that will never happen with Shaun. I grieve over the loss of his beautiful sounds... I miss them so much! I grieve over the walker being sent back to the therapists because he is not strong enough to use it. I feel the loss of my sweet baby's ability to move his arms and legs the way he was, rolling around on the floor, having to make sure everything is clean and picked up as not to have him putting things into his mouth that are dangerous for him. I miss him pulling his glasses off every two seconds. Cuddling him through the night because I can't now with all the machines. Having him sleep in my arms, they are already starting to feel empty. I miss the family pictures in the future... they are never going to be complete, they aren't complete already.

I miss him wanting~ needing his passy. His grasp of my face to give me a kiss. His beautiful smile, so vibrent and full of love. His body is getting so tired. He is a fighter, but it has been such a battle. But yet- I can not let him go. I can't stop fighting for him, crying out for a miracle for my little boy to be what he once was. And then it hits me like a slap in the face. I am thinking about myself. What must this entrapment be like for my son? Does he miss being able to talk? Does he hurt and can't tell anyone? Does he wish he could run and jump with his brothers? Does he want to grab on my face and plant a big sloppy wet kiss like he once did? Does he hear his Mommy crying and want to fix it? How must it be for him?.... And yet I cannot release him... I can't bear the hurt because of our separation.  I know the day is coming, for really we all are terminal, but it seems too soon, so much I want to do with him, show him, teach him and yet I will not be able to. I am SAD. Death has not lost its sting. But I will not stay in this place, for it is dark and ugly. I don't want to be here.
Its not fair. Its not fair that I can't have this time with my boy. That Stephen and Scottie don't get to keep their brother around. How are we supposed to share this with them? What do we say? Its not fair that they have to hurt like this, that they have to lose their brother. I don't want them to hurt but at the same time we don't tell them because I don't want their time with him to be jaded. To hold back anything. They need him just as bad as I do. As he does them. They have such a love for their brother. And Shaun for them. Forever brothers.
Then Jesus shares with me while I am in that terrible place, crying in frustration and agony of what will come on my kitchen floor, that Shaun is a gift. One that I have said, "Lord, I give him back to you to do with what you please." A gift that will keep giving long after he departs from this world. He was hand chosen for this mission. God said, "Who will do this?" and Shaun answered, "Here I am, Lord. I will go." When Shaun makes it to heaven, I can only imagine.... Jesus welcoming him with open arms saying, "Well done my good and faithful Servant. Great is your reward." And Shaun will be able to TALK, to RUN, to JUMP, to PLAY and to WATCH over us, waiting for us, and being in perfect peace with his Lord~ and his sister.
And my miracle that I spoke of earlier? Well that was reveled to me too. Shaun's miracle is his salvation; that he will not be in any more pain. That he will be in that perfect place in a glorified body that cannot hurt, get sick, be broken. His miracle is that he will be in heaven. I think in this realm. In this time. In this place. But in my heart, because of what I believe, that Jesus died, rose again and will return one day for all of us, this is my saving grace. That Shaun will have the ultimate healing, be in heaven~ what a wonderful place~ and this gives me a little peace. Enough to keep on going.
I know I will have more days like that one, more moments that I just don't know how I will keep on going, but I will. Until then, I will try to live Euchristeo~grace, thanksgiving, and joy~ finding 1000 gifts, looking for the good in the bad, lessons in the dark areas, grace in the moment and joy in the time we have. I will make memories- silly, fresh, fun memories- ones that I can hold onto, the boys can cling to. And I will continue to count the blessings.