Two Different Realities

Yesterday I ventured down to the Georgia State Capitol Building with my friend, Candice, and two of her daughters.  This week is CHD Awareness Week, and Governor Sonny Purdue took pictures with the CHD group for the occasion.  I knew I would be a little different from the average attender since most who are active in the CHD world have kids who are currently struggling with a heart defect of some kind (or more likely multiple heart defects), and I was prepared to be asked about Samuel and to have to answer questions about him.  Candice introduced me to her friends as "Samuel's mom," and that was both beautiful and hard to hear.  I was grateful for her willingness to do that.  It takes courage to call me that -- much less introduce me that way -- and I knew she did it because she reads my blog and remembers how a stranger at church called me that, blessing me deeply.  I think she also did it because she's sensitive to my loss and would want to be called "Susan's mom" if she was in my shoes.  I felt a little teary every time I heard the title, but something in my heart swelled to be "Samuel's mom" again. 

One mom looked around for Samuel after meeting me and asked, "So where's your...."  I quickly jumped in and said, "He passed away."  I immediately saw the look of horror on her face and the kindness.  I think all these CHD parents at one point or another have imagined being in my shoes and facing life without their precious child, so there's an automatic compassion and even understanding.  She asked if I was ok to talk about it, and I assured her I was.  When she wanted to know what his heart defects were, I couldn't even remember one of them!  It took me a full 2 or 3 minutes to come up with "coronary fistulas," and that moment confirmed to me more than any other how far removed I am from the CHD world. 

In my reality, I am a bereaved parent.  At one point I was the parent of a sick child who had CHD, but now I am a mother without her son.  And though the CHD world certainly overlaps mine, it is not the world with which I most identify.  I felt like a foreigner when the parents talked about the many medications their kids take, their side effects, the dosages, the grants they can apply for to help pay for all the medical bills and the outrageously expensive special formula ($1200/month!!).  They were speaking a language I couldn't understand.  Had Samuel lived, I would have known what it meant to give 600 cc's of formula a day or to apply for Katie Beckett or to be concerned about the side effects of a particular medication.  But I don't know. 

Listening to the parents discuss all these things that are so close to their hearts and are their daily reality, I was reminded yet again that they, too, are living a nightmare. I wouldn't wish my grief on anyone, but I wouldn't wish their fear on anyone either.  They have to face the continual dread that the bottom will drop off of the boat.  They fear sudden cardiac arrest, blood clots, seizures, not qualifying for the next surgery, cyanosis, and a myriad of other terrible possibilities.  As much as I treasure the month I spent with Samuel, I would never want to relive it.  These parents are continually living this painful and fearful reality where their kids are unwell and around the next corner tragedy may by lurking.  I hurt for them. 

Recognizing the fear my friends face each day reminds me of a quote from one of my all-time favorite books.  Once upon a time, I taught junior and senior English, and I was privileged to teach Cry, the Beloved Country by Alan Paton.  In it, one of the characters says, "My friend, your anxiety turned to fear, and your fear turned to sorrow. But sorrow is better than fear. For fear impoverishes always, while sorrow may enrich."  I found this to be so true while at Egleston.  The fear of the first three weeks was very impoverishing.  It took so much from me.  But the sorrow of the last week, when we knew Samuel was dying, was deeply enriching, and the sorrow of the last 5 months has enriched me more than I will probably ever know.  There is something inherently ugly, horrible, and robbing in fear, but sorrow doesn't have to be that way.  It's deepening, growing, and sometimes even refreshing.  There is something beautiful and redemptive in sorrow.  I have yet to find the redemption in fear. 

I don't know what this means for my friends -- because how could they possibly not be afraid?  And of course it's better for them to have their children than to lose them.  I guess it means that I hope they can somehow find a way to live without fear being the dominate emotion -- to live in the joy of each moment with their child, to live with hope for a future, to live with faith in a God who provides whatever they need when they need it, to live each day as it comes with grace, peace, and joy...and to hand their fear to God and let Him carry it for them, knowing that He is more than capable to hold every ounce of fear they feel and more loving than we could ever imagine -- desiring to cradle them close and soothe and heal their hearts just as they want to soothe and heal the heart of their child.  And God CAN do that, though they cannot.  I want them to be able to rest fully in His goodness and love and presence.  It will be my new prayer for these people I have only recently met but who I care about in a way I wouldn't have thought possible, for I can imagine being in their shoes, and it's a hard, hard road to walk.

By far my favorite part of yesterday was seeing Susan and Sarah Beth, two of Samuel's friends from Egleston, awake and smiling and in their parents' arms.  Previously I have only seen these precious girls hooked up to numerous machines, puffy from surgery, and under anesthesia.  Yesterday I saw them as I hoped to see Samuel.  It was good for my soul to ride next to Susan in the back seat and to giggle with her about her cookie and to tease about where her food goes and to see her point to all her body parts and smile.  It was a delight to see her blue eyes light up and to carry her into her house while she rested her head on my shoulder.  I loved seeing Sarah Beth look around the capitol and at her daddy and mommy.  I am so happy that these kids are doing well.  I am grateful for a God who can work these kind of miracles and who does.  And I am grateful that He knows best, that His will is better than my own.  How could I go yesterday and say anything other than "It is a good God who we serve!"  Thank You, Jesus, for the glimpses of Your work in these children, and thank You, Jesus, that my precious child is safe in Your arms and full of joy and life, even though I don't get to see it in this life.  I am glad someday I will see Samuel even more alive than the kids I saw yesterday.  Thank You!"