As you know, Ainsley has been diagnosed with Type 1 Diabetes. All of my energy since then has been focused on learning about the disease and how best to care for her. There is so much to learn and know and we are getting phone calls from family every day who want to know all about everything. All potential caregivers are understandably nervous about the sheer scope of what they will have to know in order to one day babysit Ainsley.

As a natural outflow from that, I’ve started a new site at www.raisingainsley.com. Hopefully it will be a good source of information and education for family and friends, provide a window into our daily lives now, and give back to the type 1 community knowledge base that has given so freely to us.

I’m going to keep this blog around and perhaps still write on it, but for now all of my efforts will be focused on RaisingAinsley. Hope to see you there!

Ainsley was diagnosed with Type 1 diabetes on Tuesday. I walked in with a perfectly healthy kid at 12:30 pm and 6 hours later I walked back through my front door with 8 prescriptions and a diabetic 2 year old.

They tell us over and over again how lucky we are that I noticed that she seemed thirstier and was wetting more diapers and that I decided to check in with the doctor just to be sure. They tell us that by far most children of this age don’t get diagnosed until they are severely ill and end up in the hospital for multiple days. We’re thankful for that, we are. We don’t feel especially lucky.

I sobbed most of that first day. I felt like throwing up. Everything in me tried to reject the news. I got distracted by the time we got to the Pediatric Subspecialty clinic and we had to take a crash course in understanding and administering insulin and beginning to make a dent in the myriad things we now need to know about.  By yesterday I was doing pretty good. I’ve  been through worse than this. She’s still here. She’s still her. We can cope. I wish that I could bring Lindsey back and give her diabetes because that is so much better than death.

Ainsley has been an absolute champion. She never cried at the doctors office through all the pokes and her first ever insulin shot which was administered by a grim and inexperienced Me. She did cry the next day. She offers me her finger for the pokes now and didn’t cry for her shot at breakfast this morning. I can’t believe how strong and amazing she is.  It’s Greg and I who are weak.

I have to force myself to test her and to inject her. I feel sick at how much I don’t want to hurt her, how much I want to take the shot for her. We wish that we could bear this for her and we can’t. We can’t do anything but keep her alive by hurting her. And restricting her foods. Telling her juice and cereal are no longer part of her life. That a snack now looks like a string cheese or cauliflower or 1/4 cup of blueberries with 6 almonds.

Everyone I’ve told has been shocked at my streak of “bad luck”. First Lindsey. Then Greg got diagnosed with celiac disease. Now Ainsley. Both of the girls now have to get tested for celiac and thyroid disorders.  Ellory now runs a 1 in 20 chance of developing diabetes.  All of this and it’s so much but I think I’m actually handling it really well. I haven’t been devastated since that first 24 hours and I know that it’s all because of Lindsey. I am grateful now, in a very strange way, that I went through that first because I am so much stronger as a result of it. I have perspective.

We can deal with this. There isn’t a cure but there is a treatment and advances are being made all the time. Our doctor tells us that in 10 years there may be a cure and if not that, radically better treatment options. She’s still here. She’s still her. I can still hold her in my arms and play with her and talk to her and I know how very much that is worth. We’re okay.

If you are one of those ragtag determined few who follow along, you will have noticed that I have been shunning this blog for a while. For 5 months, to be exact. That’s a long time to shun a blog. Long enough to kill it off, and perhaps I have done that.

I labored under a lot of guilt that I was no longer blogging honestly about my grief process because I so wanted to share it with the world in the hopes of it comforting someone as I have been so deeply comforted by other honest tales of grief.  I still couldn’t bring myself to do it and that is because in January I went to a Very Dark Place, a BP oil spill of depression and loss so massive that once I managed to get a cork in it I wasn’t about to mess with that thing. I nearly lost myself in it.

I entertained thoughts of running my car into a tree. I flirted frequently with the thought of just taking my purse and walking out into the rain and following my steps to wherever they led. Standard stuff, really. Trying to get away from it all. That is how bad it hurts, folks. That is how hard it is to live with a truth that you want to reject so badly that even someone who loves their kids and their life as much as I do would be tempted to end it all. That is grief.

Next week will be 10 months since Lindsey died and that small amount of distance has still enabled me to ride the waves with considerably more dexterity than I once did. It’s not all morbidity and black. There is a lot of joy and laughter and life happening in my life still, and that is another side of this process and just as important.  So . . . here we go again

My wish for you is that you’re laughing with pure unadulterated joy in a place painted by your imagination. I wish you more fun in that playland than even we had on our first trip to Disneyland as kids. I wish you companions so awesome, so right for you, that they make you feel perfectly known and understood and completed, just like you did for me.  It’s hard to imagine that they could love you more than I do, but – for you – I wish that they love you better than I ever could. My wish for you is that you’re so busy having the absolute time of your life that you never miss us.

My wish for me is that you were still here.

My parents gave me my favorite picture of Lindsey in a frame for Christmas. It was the last time I ever saw her, at my cousin Matthew’s wedding. In the photo she is squatting down clapping while Ellory dances and she’s looking straight at the camera with her classic impish smile.

Tonight I was sitting on the couch with the photo on the table next to me when Ellory came up and started asking me questions again. “How did Lindsey die this year, Mommy?” “Did her body fly out of the car? Did her body break?” Periodically she does this. She processes what she knows about what happened and comes up with new questions. She chews on the problem.

“Yes,” I responded. “Remember   – she was in a big car crash?”

“Couldn’t the doctors fix her and make her better?”

“Sometimes people get ouchies so big that doctors can’t make them better and that’s when they die,” I said.

“Did her body fly out of the car? Did it break into pieces?” she asked, worrying at the problem, trying to understand an ouchie so big that even a doctor couldn’t make it better.

“No,” I finally admitted. “Her body got crunched by the car.”  Her eyes grew wide and filled with tears as I finally said something that she comprehended. I held her while she absorbed it, and told her, “Even though Lindsey’s body died, her heart went to heaven and she’s happy now and she’s watching us.”

A while later Greg and I were talking in the kitchen when Ellory came in.

“Mommy, someday, if my body breaks and dies, my heart will go to heaven and we will be two hearts in heaven.”

I was walking out of the grocery store pushing a full cart and talking on the phone when I saw Lindsey. I was instantly adrenalized, perfectly frozen on point like our dog, Miles. She was pushing her own cart a ways ahead of me. She was short with a blonde ponytail, a black sweatsuit and a distinctive left-leaning shuffle of a walk.

This happens, and normally you realize right away that it doesn’t really look so much like them but this time it was different. I walked along behind, watching, and it didn’t change, it still looked like her. I knew, I knew it wasn’t her. It couldn’t be – I’ve seen her cold marbleized body, I’ve pressed my lips to it, stroked it, sat by it, studied it for hours. I’ve stood atop a patch of earth visualizing that body 6 feet below me.

My mind knew it wasn’t her but the something else that ties you to another being, the something else that’s more than your mind, ignored my mind completely, staged a coup, and took over my body screaming, “It’s her! It’s her! It’s all been a huge ruse, it’s Point of No Return in real life!!”

I knew it was wrong to run after her, I knew that it would be wrong to grab her arm and whirl her around, and I knew that staring into her face I would not find Lindsey. But there’s no arguing with that part of yourself. Don’t they say that love is unreasoning?

She turned though, just then, and her profile was a stranger’s, as I knew it would be. I was spared the mortification of assaulting her; I was not spared the mortification of my thoughts, the strange futility of my impulses. I wasn’t devastated, I didn’t cry. It all passed in a moment, in the blink of another person’s eye. This is how it is now, these microcosm melodramas.

I dream of Lindsey sometimes. There was that time right after she died, where I could feel her but not see her. There was another time that I dreamed of just her and my mom and I standing in a room talking, and I could see her but only her profile. She never looked at me. I wished I could see her face and I wondered if I ever would.

Last night I was dreaming and it was though my dream got interrupted and I somehow knew that Lindsey was coming and that it wasn’t really real and it would only last for a minute but that I could see her if I wanted. I said, “I don’t care, I’ll take it” and went racing out of the house I was in.

She was wheeling up the street in a wheelchair as fast as her arms would go and I was tearing down a long flight of rough wooden stairs and she waited for me at the bottom and I scooped her up and began swinging her around in circles, holding her to me. We were so happy and excited to see each other, so filled with joy, and she pulled her head back and looked me full in the face.  I have a freeze-frame in my mind of that moment. Her expression was wonder and love. Her makeup was soft and pretty and her hair was her real color, blonde, and shoulder-length.

I haven’t seen her face in so long and when last I saw it she was lying cold as marble and she wouldn’t open her eyes to look at me. There are no words to say how rich it was to be reunited with her for a moment or how it feels to have it taken away again.

What is all of this and what does it mean? Is it my brain trying to heal itself?  Is it just the longing of a soul for what it can never again have?   Or is it true what some say, that the deepest connection is not severed by death? Perhaps it is like the final version of Telephone, that children’s game, and we whisper in our cups down that last tenuous thread to each other.

I don’t have these answers and I suspect I never will on this side of the grave.  I try to tell myself that the whys of it don’t matter. Today I tell myself that all that matters is that I saw her and she saw me. That I held her in my arms again.

As I’ve said before, when you lose someone close to you it feels as though the world should end but it doesn’t. Grief does not stop your life; instead you learn to live your life while carrying the grief with you. Everywhere you go. You never know when it might strike. You might be walking through the makeup department and suddenly there’s tears rolling down your face.

The best thing to do is to let it be what it is. All the time. If you feel happy, let yourself be happy. If you find yourself crying in the makeup store, just let it be and if people ask, tell them you lost your love and smile through your tears. You never know what might come of it.

9 times out of 10 when I sit down to write I don’t really know what I’m going to write about. Sometimes I have an idea of a topic and sometimes, like yesterday, I have absolutely no idea at all.  I just sit down and start going and stuff comes out. I’ve come to realize that writing is my thinking process; often I don’t even know that I feel a certain way or think a certain thing until I’ve written it and then it’s like, oh. Duh.

Writing is tremendously revealing and cathartic for me. Sometimes, like yesterday, I arrive at realizations that are profound and completely change my direction.

I felt Lindsey’s presence yesterday as I wrote. It was as though she had been waiting for me to write that and get there so that she could show me how she feels now, how free she is. I felt a tremendous sense of presence and for a moment it was a though a window opened into the place where she is and I soared with her. I can’t describe it any better than that. Words don’t come close to it. A window opened and I felt, and then it closed and I wept.  I had touched joy and it was wonderful, and it was terrible.  To feel some sense of her again and to know freshly the depth of my loss. It is so hard to let her go, and that is what this process is – it is slowly, slowly letting her go in fits and starts, in bits and pieces. It’s opening your eyes for a moment and then squeezing them shut. It’s taking a deep breath and extending a hand to touch, and then drawing it back.  It’s like being a child at the edge of an ice cold river on a hot summer’s day – oh, how you need some relief from the heat, and, oh, how painfully cold the water.

I have this little book that I am doing called Healing After Loss by Martha Whitmore Hickman. It’s like a daily meditation, or a devotional for those of you who can relate to that term.  The thought the other day was, “Through this experience I will find  in myself new strength and wisdom – perhaps, even new joy.”  I don’t feel the joy yet. I trust that it is coming, one day.  I don’t know about the wisdom either – certainly, I have a lot of new thoughts and perspectives and I am covering a lot of new intellectual and spiritual ground. Perhaps one day that will solidify into wisdom. What I do feel is new strength. It seems odd to feel strong when this experience strips you down to your bare bones and takes everything from you, but strong I often feel.

The thing is that experiencing death firsthand, looking it in the face for the first time, is not something you can explain to someone else or imagine before it happens to you. Certainly I have felt terror many times in the past at the thought of losing, say, one of my children and I imagined that the loss would kill me or at least put me into some kind of coma. But I had no idea what it would really be like. I’ve crossed over into a different experience of life now, a different group of peers. I walk amongst people who do not know this with either compassion or a slight sneer, depending on the day and how snotty they are, but either way I am no longer like them. I know things they do not.

I no longer fear death. Death is not as scary and black as you think. It is hard, it is very very hard, but it is not evil. It is simply a difficult truth that is not going away, no matter what. With such things it is better to turn and face it squarely than to pretend you can accomplish something by running.  I dread death’s coming, appropriately, as I know it will come to visit me again and again in my lifetime. But I know now what Death looks like, the form of it, the weight of the grief I will feel. I know that I will survive it, without even trying, without even wanting to. I will survive it and find my feet walking again and my hands working, like waking from a daydream while driving a car. I dread the loss of the loved one much more than the pain; the pain can be borne. The loss cannot be rectified.

I have learned to look at death more completely though. I do not know where Lindsey is or what her experience is but I know very firmly now that she went on in some way and that she is happy and free of pain. That is something she didn’t have in this life and I’m very glad for her. It is we, the left behind, who suffer. She does not. I stay focused on that and that is a strength I didn’t have before or even at the beginning of this experience. All I could think was that I would never see her again or hear her unique thoughts or receive her gifts. I thought only of my loss, and it is tremendous and it is unfair. But my horizon is greatly expanded by thinking of this outside just my own terms; I see more of the picture.

In the grand scheme of things, our loss is present but her gain is also present, and it is a gain. She is free of all the troubles and heartache and pain she had to bear in this life. She is free. When I close my eyes and let go of my pain and feel that with her, I feel a great soaring joy . . . and I know that that is loving her more than myself and setting her free.

I guess I found that new joy after all.