Sunday, April 18, 2010

There's Joy In The Journey, Even When It's Hard

Just wanted to pop in and write here that recovery is happening. So slowly. But the moments when I feel able to focus on life outside of my birth injury are getting a little bit more frequent. I still deal with pain and probably will for several more weeks until the seton is out and things have healed (please God, NO complications). But I'm learning to deal with it.

I have to say though that there is one book that is walking alongside me on this journey in a way no other book could. And I'd recommend it to anyone dealing with health challenges that make one wonder if healing will ever happen. I know, for me, sometimes when the pain is really bad and the wound looks so terrible, I confess that I begin to wonder if healing will happen or even if my life will be taken from me. My birth injury and the resulting chronic infection is not life threatening at this point, but that is still a fear I battle at times when I look at my little boy and long to live forever so that I can always be here for him. And you know what? That's where this book comes in.

It's written by someone who has faced horrific injury that stole her ability to function below her shoulders. But it's also written by someone who has been used mightily for decades now to encourage others, to share with others a beautiful faith in Jesus, and to make tangible differences in the lives of folks with disabilities all over the world. Her name is Joni Earickson Tada, and the book is her memoir called, The God I Love.

She writes with honesty, openness, vulnerability, and she gives hope even when the parts of her story ebb at their lowest points. Truly, she is a person who makes the phrase "beauty out of ashes" totally make sense. Out of the depths of her pain and struggle one sees indescribable beauty formed by Someone who could only be called a Master Creator.

I'm going to be sad when the book is over, for it's been my companion during the often painful process of dealing with daily bodily functions, wound care, and the ever present sitz bath in iodine-laced water. It's a special book, for I'm a melancholy person easily given to throwing lavish pity parties where I can fantasize about all the horrid things I'd like to say to the midwife and OB who caused this, and yet this book stops all of that in me and incredibly turns my focus to gratitude for all that I'm learning through this. Weird but true. I hate what has happened to me, and yet I'm thankful for the suffering that is working to change me and grow me in ways that a non-injured life could not do in me.

The other thing I totally appreciate about this book is that Joni is extremely open about the fact that she didn't suddenly reach a plateau in her suffering that allowed her to be perfectly happy about everything. She's clear that despite the fact her story has changed many lives that she still wrestles with negative thoughts that would seek to creep in and take control of her whole mind and heart.

I needed to hear that. Because one moment I am feeling hopeful or grateful or some other positive trait. And the next I'm ready to wish a horrible death for the midwife, financial and reputation ruin for the OB, and recognition by the whole world that something very wrong happened at that hospital. It's a crazy pendulum to be on. I originally thought that I would stop feeling that way....once the hospital listened to me, once I got surgery, once I got to seek justice, once...and the list goes on. But in almost 16 months I can say that every time I think I've arrived at some inner resolution that another area needing to be resolved becomes apparent. I wrestle with swinging between hopeful patience that one day all will be well and the opposite feeling of despair that nothing will ever be right. When I pick up Joni's book the pendulum swings in a better direction, one toward hope that one day I'll be okay and that I will finally be able to let bitterness and anger and hurt go.

It's a long, arduous, trying journey. And I'm so completely glad to have Joni walking with me. Because that is EXACTLY what she is doing. Legs may not be involved, but she's walking with me nonetheless.

Monday, April 12, 2010


Songs are so important to humans and animals alike. Really.

I asked my friend from church to email me a copy of the songbook we use in prayer group so I could have all the words with me to sing during the time I was going through surgery and recovery here in Missouri. I found myself singing them softly to myself whenever my anxiety would start to climb.

My son has a few songs that immediately calm him and help him fall to sleep, and he has songs he loves to splash and clap to when he's in the tub. He even has a cd of special songs that bring a bit of happiness if he's getting tired of being in the car.

I've been wanting to tell everyone about four songs that are especially written for those facing terminal illness or know that they are in the last chapter of their life. He's a doctor who is well acquainted with people and their questions about how to face the fact that we are all mortal. This guy is really talented and has a heart that is genuine. He has provided these songs in a free download for anyone. I highly recommend at least clicking on the link to listen to them. My favorite is the first one called "Is There Any Hope For Me", but all of them are good. I hope you take the time to be blessed by them. For me, though I knew in my head that this whole saga wasn't "life or death", I also was keenly aware of how fragile life is and did have to face some deeply personal questions and thoughts in this past year.

Anyway, I hope you are blessed by those songs, and I hope you find yourself finding more songs of your own that fill your life with joy and peace.

Saturday, April 10, 2010

Surgery & Recovery

I had surgery yesterday morning and was home before noon, wonderfully. As the pain meds have worn off and I've had a chance to see the wound that had to be made to heal me, I am realizing recovery will take more than just a few days. I am black and blue, swollen, and possess a hole not made by God that is equipped with a seton to keep the hole open so infection can continue to drain. I am a little afraid at this point for a variety of reasons, but also a little bit full of hope that at long last healing can come.

The hospital and staff were both wonderfully equipped with comfort and compassion. In fact, it was tempting to move in were it not for the knowledge that it would cost more than your average penthouse suite. We don't yet know how the billing will all work out, but are trusting that it will come together and that we will be able to pay everything off one way or another.

The surgeon has hope that I can have my life back very soon. I'm glad he has hope, because as I figure out what body part is what and see all the black and blue, my hope isn't quite as fixed. The surgeon also is confident that there won't be complications and that the seton can be removed in a couple of months with no further surgery being required. That would be a dream come true. And as I'm living proof that some dreams do indeed come true (I did get to marry the prince of my dreams, well, a lifeguard really), I am going to hope that this dream too will come true in good time.

In related news, the anesthesiologist I had was incredible, and I've decided I'd like to see about keeping her. Not for the drugs, but for the compassion and gentleness she possessed. The nurses were very good and kind, and their personalities were entertaining and made me laugh discreetly at times.

Well, it is time to go attend to myself. Blissfully, my husband is here to care for our son, so I am able to care for just me at long last. The night was not so easy as our son had trouble sleeping since he couldn't nurse with me, so somehow I mothered him last night in the midst of trying to sleep under the influence of pain meds. He was so happy this morning when he could finally nurse. So was I. At least there is one thing I can continue to do for him. But now it is time to take care of me. Bye for now.