My family is watching the storm roll in. Watching. Waiting. My sister learned terrible news last Monday. This is the same sister, B, that I asked for prayers weeks earlier for her baby. Now, I am begging for prayers once again. My sister's baby, baby M, has many complications, which are life threatening. One doctor used the word terminal, one did not. She currently has a bilateral cleft pallet, hand deformity and the worst of it is Hydrocephalus (water on the brain). She will probably be mentally delayed. Right after she is born, she will need a shunt put in her brain, and after that multiple surgeries to repair her pallet, and possibly more brain surgeries. We truly do not know anymore than that. We find out more in her next several appointments.
The storm is here, again. My other sister K (B's twin) had a child, James, with a genetic disorder called Menkes. He passed away at 19 months. We have been down this road before, and it's an ugly one. Of course, we loved James passionately. We were blessed beyond blessed to have him, even if it was for only 19 months. If I were to choose though, I would choose him here. That's why I say it's ugly because even though parts of the journey are breathtakingly beautiful, the end result is still the same, he was taken all too soon. I have watched one sister bury her child, and chances are, I will watch another.
Back when James was diagnosed I had written Reese a letter, I don't even remember what was in it. Probably a lot of questions that started with "why!". Since this blog is about our friendship, and because she wrote something so beautiful the other day, I wanted to give you a small glimpse of how blessed I am to have her.
Here is just a portion of her reply 5 years ago, and a portion of the email that once again I am leaning on.
The first thing I know is that God became human so he could understand us. He has felt every emotion you now feel, including anger and doubt. Whatever happens, never feel that you have to be "good" when confronting God. Wail, scream, beat your pillow up. Be honest. Tell him you feel angry and hurt and betrayed by the things you don't understand. Your ability to feel emotions is a gift (though it sometimes feels like a curse) from God. He is not above listening to your honest feelings. I read a book once about that said it's important to be angry and honest "in God's face," in the way a small child faces a parent for answers even when there are no answers to be had. To turn our backs and rail against God is a sin, to face him and present our pain, our questions, even our arguments is not.
So, at the end of the day, after crying out, "Why God? It's not fair! It's not right! I don't understand why you've allowed this destruction to touch my family. This hurts more than I think I can take, and on top of it I have to watch my family in pain. Why? Why? Why?" After the emotions are spent you curl up in Daddy God's arms and say, "Sometimes my life just don't make sense at all. When the mountains seems so big, and my faith just seems so small. So, hold me Jesus 'cause I'm shaking like a leaf. You have been King of my glory, won't you be my Prince of Peace?"
But, Heather, it's a process. Maybe the old and mature attain the perfect understanding of not understanding, but the rest of us struggle. The important thing is that you struggle against your doubt rather than giving in. Know that you won't feel good about this terrible news, ever, even if you come to accept it. Pain will never feel right, because it's not.
There is so much more to that letter, that is but a small portion. I remember the days after James was diagnosed and I was so angry. Daily I would get up and read that, and then proceed to yell at God, to tell him how I really felt! When I went to bed, I once again, would wail and scream into my pillow and sob myself to sleep, and once again, tell Him what I really felt. After awhile the anger subsided, and the peace came in.
I am angry again. Wondering how God can ask this of us twice. Wondering how I will watch my sister do this, hating watching my children grieve over the cousin that they will adore no matter what, but probably won't have the opportunity to run and play with.
I know that by the time M gets here, more questions will be answered and hopefully we will all be feeling the peace that we so desperately need but right now we are riding the winds of this storm and even though God is in control, I hate where He is taking us.
I also know that after the storm has passed, and the sun is shining, the landscape will have changed, all of us will have changed. We will have loved deeper then ever before, cried harder and prayed longer. Our family will never be the same. No matter what the outcome, we will have changed for the better, but right now it is painful and so very hard!