Yesterday a little girl with 22q deletion syndrome died. She died with family that loved her and a community of thousands cheering her on daily. When she was born, my friend Jennifer adopted her, knowing she had 22q. She died after a year of surgeries and interventions that included having her chest cracked open and left open for machines to keep her alive. Through it all she shone her huge personality and light for the world, and her mother was generous to share her with the world through near daily updates.
Joy mattered. She changed my heart in so many ways.
Chad wrote this, and I cannot say it better:
I've posted a few times here about Joy, a little girl with the same genetic disorder that Isaac has, but with all of the major complications that Isaac has avoided. Joy was as hardcore as anyone you can name, and she fought as hard to live as anyone could have. Joy died this afternoon - she was just over a year old.Before Isaac was born I became so annoyed with a fellow homeschooling mom who posted near daily updates about candle vigils and baby memorials for people she only knew from the Internet. I ended up blocking her because it annoyed me so much. How could a stranger be so emotionally involved in the death of another woman's baby? So emotionally involved that she changes her profile picture every week to honour a different dead child that she never knew in real life? It seemed to me like borrowing trouble, funeral chasing. I know. I was a horrible person. Those of you who know me, know how I feel about blocking people, I just don't do it.
Her story was recorded in very near real time here - Joy's Journal. It's sad, but it's worth looking through to see some of what families with special needs kids go through. Joy's story was particularly heart wrenching, and through that she brought many people together in support of her and each other.
Joy was important. She will be missed.
Since then, asking those questions out loud (be careful what you wish for y'all), I have been given the gift of knowing why and how. Joy's struggles were a testament to the human desire to live and love, to strength of spirit. Her mother fell often to her knees, reminding us all that we were blessed even in the darkest times. Praising God when most of us would have walked away from faith.
I often wondered how this group of 22q moms could possibly tolerate me, let alone welcome me into their confidence and friendship. Isaac is not struggling with medical needs. He is not sick all the time. He has never been hospitalised. The truth of it is that the future is unknown and these women KNOW that. They know that life and health can change near overnight and that a healthy, vibrant child can lose all colour and spirit and meet with Jesus in the morning. 22q does that. They know that, I know that. What they also know is that finding our own Joy, to live each day in her light and warmth, is what we must do. When the darkest times fall on us, we fall to our knees, and we walk through each day with grace.
In the meantime, we are human. Last year another 22q warrior, Jacob, died. When I first met his mother Becky, my foot went directly into my mouth as I said to her that her updates made me terrified as I held my baby, that the unknowns of life with 22q were overwhelming me and her stories left me dreading the future. She had quite a few words to say to me and the other mom that were feeling this and none of what she said was cruel or untrue. 3 years later, I know her more, and I am so grateful for her patience and grace. She had 15 years with Jacob. He mattered to all of us. All of the 22q children matter to us. We share with each other our fears, our frustrations, what we wish we'd have said to an incompetent medical professional, what we DID say, and sometimes we fall apart. We also share the joy and value that each life lived can give to the world. Jacob and Joy both had a life of peace and happiness and their lives were not tragic or sorrowful. Should I be terrified of that? No. Not even a little bit. By Becky and Jennifer's example, I am more gentle with everyone around me who makes careless or stupid remarks like I once did (will again, knowing me).
I am heartbroken on this winter day. My tears froze to my cheeks and fell like icicles into my hair as I brought in firewood. Grief stabbed at my heart for a child and a mother that I have never met in real life. Tonight, we will light a candle and pray for them.
Joy was adopted. People often ask why would a family adopt a child with so many medical needs. Why borrow the trouble? The answer is because that child matters and is important. That child needs love as much as any of us. In that, Joy was flooded with love and prayers and all of us can still only do that.
Please forgive me as I stumble through these emotions and thoughts, if I have worded something in a terrible way or not conveyed what I meant. I will try again once my mind and heart are healed a bit, which may be a while. Please take the time to go to Joy's page, Joy's Journal, and read about her. Pray for her family.
As Jennifer would say, WE ARE BLESSED.
