New year's has always been my favorite holiday. To me there was something refreshing and truly reflective about starting a new year. I used to have insomnia for nearly two weeks in January deciding on whether I was happy with my life and my decisions and the efforts I would make to point myself in the right directions.
Five years ago I fell in love with Jeffrey and some other very devastating things happened within my family; four years ago we were in a difficult place but we were together and expecting our first child, and so it went. Last year all our holidays were spent in confusing, desperate emotions as we had not a clue what was going on and what to expect with Madeleine's newly found health condition that was still a huge mystery (she was admitted 12/22/11 and spent every holiday in the hospital). And then of course, this New Year's. I'm just not sure I enjoy it anymore or that it has the same meaning for me. Now that I have reached a place in my life where I make a lot better choices and put my children before myself, nothing seems fair, or just, or appropriate in terms of a personal threshold. Jeff and I have never felt more pushed, more exhausted, more emotionally spent and wasted, and stressed, and anxious, and depressed, and at the same time, blessed. The hardest thing we have ever had to do has been this year; and yet, that still isn't enough. Because by far the hardest thing will be to let go and let Madeleine become an angel. I hate this New Year's. Please pray for us, for me- I feel like I'm gonna lose it anytime.
Because of how sleepy Madeleine was yesterday we made adjustments to her medication under the advisement of the hospice doc. She paid greatly for it, and so did we, as all night long it was screaming in pain and us feeling desperate that we weren't sure how to catch her up and make her comfortable again. We were on the phone with the hospice nurse at 5am, 8am, again at 3pm when we had finally caught her up and we slept. Such a difficult balance for us as her parents: to keep her awake and not sedated from her medication to enjoy what she can while controlling her pain. Yesterday we felt like maybe she was slightly over-medicated, making her too sleepy. We know now she's exactly where she should be for pain control. For personality, it could still be not enough. Madeleine stays relatively quiet during the day, unless she's completely comfortable and we get a couple of her little words. However this morning when she had had two doses of her morphine and was completely knocked out, she was TALKING in her sleep. Really talking, like she used to before the hospital stay, all the words she hasn't been saying since being home. This leads us to believe that she has the ability to still talk, just for some reason she isn't, and could that be because she's quiet while compensating for her pain. Praying for the right answers.
We are not well emotionally. Every day could be the day, and trying to share her with people who love her is difficult, not for the sharing part exactly, but our little nurtured, cultured, small space for her and talking about her. We have tried for a very long time to establish boundaries for our emotional health; as hard as it is for any other one person, it is exponentially harder for us, her parents.
Jeff is looking forward to 2013. Me, I'm trying; that's the best I can do tonight. December 31st brought the newest baby cousin, little Julian, bringing hope and beautiful life to the New Year. Hoping to remember the beauty in 2013.
My dearest friend. The strength and courage, the wisdom and commitment that you are showing is incredible. Your honesty and transparency is so unselfish of you at a time when we would only think of ourselves, you continue to reach out. Although I want more than anything to be there with you, the girls, and Jeff, I know that you are on this very personal road as a family and the rest of us are now called to be prayer angels from the outside for the four of you. You need your privacy. It is now our time to stand in the gap for you. We must call on our rest... to give you strength, on our sanity... to help with your decisions and to find the words that only God can supply to explain all of this to little Annalise, on our faith... to hold fast to your confidence and trust that God has all things under His control, on our love... to bind you and Jeff together to get you through all of this and onto the other side, restored. I have two favorite passages that I have often called on throughout my life. As we go into the new year that you say Jeff is anxious to enter into I remember that "this to shall pass" and as for what is in store for your family, "but by the grace of God go I". He will bring you through and on to a new life with wonderful memories that you will grow to cherish. God's grace be with you and your family, my dearest friend. Call on Him for even your smallest need, watch and see, He will supply, and in that, you will be lifted up to see that He wants to love and comfort you at this time. Ask Him to. Love, Cynthia
ReplyDeleteThere are no words that can express my sorrow in finding out over the holiday- back in our hometown, what has happened for Madeleine and for you. It broke my heart to hear, and to think of your breaking heart after everything you have all been through is just too much. I went to church (something I haven't done in years) to pray for Madeleine. I asked the pastor to pray for her and for her dear family who loves and supports her in the most admirable way I have ever seen. My own tears, as selfish as I know they are, did not even slightly subside until I spoke with my own mother who reminded me of the glories of heaven, and the end of pain that this poor baby girl will know when it is all over. I know that does not mean the end of yours, but I have hope that Madeleine will bless her mother, father and sister, and all the family, friends and strangers who love her, with the strength and beauty that she herself was blessed with. I remember my mom always telling me that god takes the best ones first… maybe that thinking is simply a way to cope, but I have to believe that god or whatever spirit blesses this earth would not inflict such a disease on a child without some higher reason. Perhaps Madeleine is an angel who does not know such pain, who lives above us- reaching down to us to teach us the value of life, the value of love and family and so many more things. I have learned so much from her- a little baby teaching an adult how to better live life. It is not what I (or anyone) would have chosen for your little angel, but in looking at her face- her beautiful, sweet cherub face, I am reminded of beauty and of good. I will take that with me and hold onto it forever, as I’m sure you will. I would do anything in the world to take away her pain and yours. My heart is with you.
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