I miss Mallorie so much today, but the fact that it's been one year doesn't mean I miss her any more today than any other day. There is just no day when the missing isn't profound and doesn't catch in my throat. My friend Linda, who has also lost a child, emailed me today and said this:
Bradley passed away July 9, 2009. It is STILL so hard for me. I've realized that this is not something I'm just going to "get over" - a part of me is gone and I'm different now.
She tried to tell me this almost a year ago, that it might be a little less sharp, but the pain would never really go away, and although I suspected she was telling the truth, I wondered why she was sharing that with me. But her words rang true, and she was very careful with her words, because she said she knew I was so fragile and that almost anything said at that time could be painful, but still, she needed me to know I was never alone, and she was always there. Today, the only, and I mean ONLY (though I find it so hard to write this down) thing I "might" just be able to call a blessing about having lived through the loss of my child is that today I can read something like what my friend wrote and weep, because I know what Linda is saying. A part of her is gone, and she is not the same Linda I went to nursing school with. Do I wish I were ignorant of this pain? YES.
It is impossible to make this pain make any sense in my own mind, because every time I try to give myself a reason why there could possibly be some purpose or blessing (for someone else) in this loss, my heart breaks, and the reasons I come up with seem limp. Just being able to tell myself that I would not have felt able to drive out to see Cathy at the hospital if Mallorie were still here is simply not enough to ease my heart. It doesn't feel like a good enough reason at all, but this endless exercise seems to be what my heart feels it needs to do. To find some meaning for the pain. Because at least I've discovered this: the only thing that helps (me) at all is to reach out to someone else suffering, because finally, I understand a little bit. I understand the pain Cathy feels as she tries to hold onto hope when daily the news from the doctors is grim, because they can't speak hope aloud in that room because they believe it is wrong to give a family "false hope." Annabel is in the very same bed where Mallorie began her struggle, on February 11, 2010. Cathy is sleep deprived, probably not able to eat much, and so, so afraid, even though she knows that God has always loved Annabel and shown His amazing power of healing through her. Because she knows that sometimes God simply says that what we are asking for is not the best right now. It's that part that the enemy uses all the time to tear at my heart, because it works, now.
But Cathy and I also know the true part is that He has ALWAYS loved Annabel (and Mallorie). And because He gave those girls to us, we know He loves US. That doesn't ever, ever change. It's what I cling to, because I can never be tricked into believing that He hasn't always adored Mallorie. I (thankfully) saw Him sustain her in far too many situations to forget, when only He was able to make the predictions a lie. So if one example of His care and His power can temporarily seem to be explained away by the enemy, there is no way my heart or my mind can be manipulated to forget all those other times.
When she was born with a large opening in her spine that was leaking spinal fluid, and did not die within moments (as happened to another child whose mom I met). When she was not given immediate surgery, as we were believing would happen after having her transferred to a hospital a couple of hours away specifically FOR that surgery, and no plans were being made to do anything for her beyond "comfort measures" (whatever those were), yet He sustained her, and temporarily stopped all apnea episodes. When her neurosurgeon months later told us he felt she "could handle the increasing head size," so he saw no reason to give her a shunt (the very same shunt he had told us when she was not yet one day old that she would likely eventually need, so maybe we shouldn't bother closing her back, to spare us and her all of the inevitable complications that usually arise). When we all forgot to notice how many days had passed without her being able to be fed after she had a complication from a surgery, and so she survived on some simple IV fluids and the power of the God who created her. When she stopped breathing in my arms and I begged God to not take her from me, especially not while I was alone and at home, and He answered my prayer with a resounding yes.
He sustained her. Good medical care and breastmilk and all the quirky supplements in the world were not enough to explain how she thrived. He wanted her here, and gave me dreams before she was born to show me how she would be born alive, and survive, but I couldn't dare to believe them, after the things the perinatologist told me about how she would NOT survive and that no doctor would touch her. So He showed me slowly, patiently, example by example, that He was entirely capable of doing the unexpected and even the impossible, because He wanted her here, with us. He loves her, and always has, with a crazy and unimaginable kind of love.
So today, even though my heart struggles with the fact that sometimes God says, "No," to our pleadings, I also know that usually He loves us with a "Yes." And only sometimes, with a "no," and those times are only because He has something better. I don't feel that truth every day, because not having Mallorie right here in my arms does NOT feel like "something better." But all those other yeses in Mallorie's life history remind me that my feelings aren't going to always be a reflection of what is true, because what is true is that God loves Mallorie, and because He gave her to my family, HE LOVES MY FAMILY in a crazy kind of way that we didn't earn and didn't deserve. So I know my God's character, and I know He loves. And loves to heal, and to give amazing gifts.
So today, I am praying for Annabel to be healed and to come back to her home, fully recovered, and Cathy must know I also am praying she will be able to tolerate some of that good home-cultured kefir that helped to heal Mallorie's gut. :)
And I am praying for John's neck, that he will be able to sleep and that he won't need surgery.
And I am praying that God will place every person and every thing in place so that one tiny little orphan in another country, who appears to need a shunt as badly and probably even more badly than Mallorie ever did, will get that procedure quickly. I only know her by her nickname, Karina, given to her by Reece's Rainbow when she was still available for adoption. The adoption laws in her country have changed, and now she appears to be unavailable to adopt until age 5, and her hydrocephalus is progressing, and she appears forgotten, because now no one can even fundraise on the RR site for her adoption ... because she's not adoptable, right? But I know better.
And I'm asking Him to continue to heal my friend Linda's heart. And I am asking Him to heal me, too, both physically and emotionally.
I know there is someone who loves my friend Cathy's little girl, so very much, and created her exactly as she is, so we could understand that "special needs" truly does mean special, ... extraordinarily special, and doesn't want her to suffer, or her mommy to suffer ... unless He has a plan for even that. Who loves my husband more than he will ever think he deserves, and is proud of who he is, and doesn't want him to suffer or to have a surgery ... unless He has a plan for even that. Who wants to heal "Karina," who right now seems to be forgotten, but He hasn't let me forget her, and I believe He can do something unexpected, and maybe His plan is to bless His church by giving them a chance to play a role. Who can and will heal me if it's part of His plan, to allow me to continue to fulfill the purposes He has for my life. And who loves my friend, Linda, and will continue to show her how very much He does. So I continue to ask him for these sorts of things, because I know Him; He knew exactly how my youngest daughter's body worked and she not only survived, but she thrived. And right now He has her safely with Him, and I think He usually says Yes, but He always loves us in the best way. And even when we don't see the purpose, and beg Him to spare us this, He will sometimes give us the gift of finally understanding another's suffering, because we experience something like it.
So I hate to write this down, but I will. I am thankful that He decided I needed to understand the pain that a mother experiences when she loses a child, and that it doesn't get better after a year (or more). That He continues to work to heal the wound, but it is a wound that changes you completely. So I know better how to pray, ... because I know a God who hears me.
In October 2006, we went for an ultrasound for our fifth child, and were told that our daughter probably had a chromosomal defect. We were urged to get an amniocentesis so that genetic testing could be done, “so the doctors will know what decisions to make.” The specialist told us that he suspected Trisomy 13 or 18, and if he was correct, then no OB would do a c-section because it wouldn’t make a difference for the end outcome. Besides, no surgeon would operate on her back (she had a meningocele – spina bifida), because “Trisomy 18 and 13 are what are called lethal conditions. They are incompatible with life.”
That’s how our story with her began, but it is most certainly not the end. As her amazing pediatrician said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick.”