My friend Sally

You've heard me talk about my friend Sally. We worked together years ago at Cook County Hospital here in Chicago. She is a Developmental Therapist who showed compassion and empathy to all the families we worked with. She also challenged me to always fight for those children we served. Sally has been fighting a devastating disease for several years now and yet inspite of her challenges, she always found ways to contact me and let me know she's thinking of me and praying for me when I had my surgeries and started my treatment... I honor her for her courage and faith and love. Sally, you are my hero and I am blessed to have you in my life. It is an honor for me to share a little bit of your story... please read more about Sally and her family...

I just thought I'd share this sermon my brother Andy gave this past Sunday. I had a REALLY rough week and had been in intensive care, something that really upset him so he decided to preach about it. I must say I was stunned when he sent me a copy of his sermon seeing as though he still harbors ill feelings for how much I dominated him as a child and adolescent! (I can only imagine how it felt for his younger sister to ride a 2 wheeler before him, beat him in basketball, skiing, and football!) However, reading this makes me very proud of the man of God he has developed into and the awareness he is helping to bring to our battle with mito!

Sermon given by Pastor Andrew Kukla

on 11-15-2009 at Palms Presbyterian Church, Jacksonville Beach, FL

Daniel 12:1-8

"At that time Michael, the great prince, the protector of your people, shall arise. There shall be a time of anguish, such as has never occurred since nations first came into existence. But at that time your people shall be delivered, everyone who is found written in the book. 2 Many of those who sleep in the dust of the earth shall awake, some to everlasting life, and some to shame and everlasting contempt. 3 Those who are wise shall shine like the brightness of the sky, and those who lead many to righteousness, like the stars forever and ever. 4 But you, Daniel, keep the words secret and the book sealed until the time of the end. Many shall be running back and forth, and evil shall increase."

5 Then I, Daniel, looked, and two others appeared, one standing on this bank of the stream and one on the other. 6 One of them said to the man clothed in linen, who was upstream, "How long shall it be until the end of these wonders?" 7 The man clothed in linen, who was upstream, raised his right hand and his left hand toward heaven. And I heard him swear by the one who lives forever that it would be for a time, two times, and half a time, and that when the shattering of the power of the holy people comes to an end, all these things would be accomplished. 8 I heard but could not understand; so I said, "My lord, what shall be the outcome of these things?" 9 He said, "Go your way, Daniel, for the words are to remain secret and sealed until the time of the end.

I’m going to step out of the pulpit for a moment to tell you about one of my enemies. I grew up with three sisters. My two older sisters are 9 and 6 years older than I am. My parents had stopped having children after they had two. That’s right: I’m an accident. Now a lot of people over the years have gotten concerned when I say that and they tell me: there are no accidents in the eyes of God. (They say that in just that tone of voice too!) I’m not going to debate that with them… its beside the point – because to my parents I was very much an accident, which is just a reality which never changed the fact that I was always loved… but having had an accident my parents didn’t want me to feel like the younger child who got left out of things so they had a fourth child: an intentional accident! My younger sister is only 15 months younger than I am and her name is Sally. For years I have joked with my parents that they could have stopped with me, I would have managed just fine. In middle school I even did a school photo project that introduced my sister Sally as “the enemy”. We’ve had our clashes, and like any siblings whose lives are lived so close together – we’ve always been each others best critics.

However, today – I don’t mention Sally to tell you about an enemy – but about how she is one of my heroes. That she is for me a wonderful witness of faithfulness, strength, and hope. You see my sister Sally, and her two children have mitochondrial disease. If you do not know what that is, don’t worry – almost no one else does either. It reared its ugly head in my sister’s life during her pregnancy with her first child, a son named Callum. It wasn’t diagnosed until about four years later, and in the mean time she was treated for a whole onslaught of problems she never really had. She had upwards of ten brain surgeries for pseudo-tumor cerebri… a condition they couldn’t fix because she didn’t have it. She was told by countless doctors, and even friends, that this was all just in her head. She was even investigated by the Department of Children and Family Services for making it up and creating symptoms in her children. All the while life for her got harder and more depressing, when it should have been at its best.

Let take a step back for a minute so I can tell you bit more about Sally. In a family that enjoyed athletics: tennis, gymnastics, golf, skiing… she was always the best of us. She was a junior olympian gymnast – she was always the strong and capable one. One thing that gave her even greater joy than sports was children. She loved children and spent every free hour babysitting. In fact my parents actually worried that in High school she would get pregnant just to so she could always have a baby around. She was a born mother. She brought home animals to care for, she cared for other people’s kids all the time – she was like the consummate baby sitter, and she even made friends with a teenage mother and brought that mom and her 6 week old son to our house to live with us. She was just born to be a mom – and she was, and is, great at it… on a good day. But here is the crime. She doesn’t get many good days. And her bad days are really bad. And here when her life should have been fulfilled with all she wanted it to be – life instead became an every day battle for enough energy to climb out of bed, eat, and make it through the day.

She’s had her validations – like when they discovered the actual chromosome that had mutated in her genetics and started her family’s battle with mitochondrial disease. And it wasn’t an empty victory – because it’s always good to confirm that you were right and so many others were wrong… and wrongfully accused you, and dismissed you. The victory however doesn’t come with solutions. There isn’t a cure for mitochondrial disease. It’s a disease that robs your body of its ability to correctly turn food and oxygen into the energy your cells need to correctly function. This happens differently in everyone who is affected by the disease – but generally it creates a body that is slowly – and sometimes quickly – degenerating and losing its ability to function. A child under the age of 5 who is diagnosed with the disease has only a 20% chance to live to the age of 20. This is the horrible reality my sister has had to face. That every day she wakes up and she has every reason to believe it will be worse than the day before. That any given week will likely involve a visit to the Emergency room. That each of her children needs to attend several therapy sessions a week, and sometimes even in a single day. That her two year old daughter still needs to have a permanent feeding tube in order to get enough nourishment to live – let alone grow. That every room in her house looks like a medicine closet. That in a life without enough energy to do basic functions she somehow needs to summon enough energy to go through superhuman efforts on a daily basis to attempt something like a normal life.

In the words of fellow mitochondrial disease sufferer, Brittany Wilkinson in her song, Energy for Life, “Every day I live gets harder than the day before, every step I take hurts just a little more. Every breath I make feels like it takes a breath away, every thought I have is trying to stop this endless pain, but I’m still here – and I’m still strong. This body may be breaking but my heart still beats on, I’m still here so I’ll still fight, with a never dying spirit that provides my energy for life.”

You can find the song on the internet… its now as much a tribute as a song of awareness and testimony, because Brittany died on September 6th of this year. And I know that my sister must, on many days, wake and wonder if today is her day – or her son Callum’s day… or her daughter Caleigh’s day… And yet my sister is my hero because, on her good days, she – like Brittany – has a never dying spirit that provides energy for life.

I do not share this with you to make you weep for Sally – though that would not be bad thing. I do not share it with you to simply share some of my pain on behalf of a family member. I share them because we all have Sally in our lives – and some of us are Sally. We all can, when we think about it, when we allow ourselves to, actually feel and acknowledge the pain and injustice and recognize the harsh, horrible, not-the-way-its-supposed-to-be reality of a life lived in knowing that each day has less hope than the day before… that the journey seems to be nothing more than a journey to death…

We all are Sally, or know her – in one way or another… and if you think you don’t – then you need to open your eyes and your heart a little wider… because there is more pain and more brokenness in the world than we are willing to admit. Your Sally looks different, struggles and suffers different, fights a different battle... maybe its cancer, or depression, or dementia, or life changing injury, or economic struggles and debt… it may, it will, manifest differently – but the darkness and the difficulty of seeing any hope: the despair is the same, and the questions that they provoke are identical.