Saturday, March 23, 2013

A CHD Story to Share in honor of Gwen's 3rd Birthday

As Gwen's life is all about Congenital Heart-Defect Awareness, I thought I’d post along that theme for her Birthday (March 17th - I'm a little late posting). 



Gwen introduced me, along with my family and friends to this vastly populated land of “heart babies”...and here on this blog, Gwen can continue to “speak” for her CHD friends. And so, here now, a "guest post" I've selected, shared with permission by heart-mom, Evelyn.

 

“He who desires to see the Living God face to face should seek him not in the empty firmament of his mind but in human Love.”  -Dostoevski

 

Shopping With Cam

By: Evelyn Fawcett
Written Apr 24, 2012 
http://www.caringbridge.org/visit/camfawcett 

Cam and his mom

Cam's Xray results came back clear yesterday.  So we can scratch infections from the list!


The remainder of this entry is for those who read this blog that may be expecting a special needs child.  It contains no medical information and is not a plea for help or pity.  It is a short story to explain what it will be like.  But, in another sense all can see through this story that God's love that comes from unexpected places in their own lives.


Last week, I had to go shopping.  I had three items on my agenda: pick up medications, buy new bottles at Target recommended by our therapist, and find a bridal shower gift for a friend.  The tasks seemed insurmountable, but I geared us up to go.


Anyone with children can tell you it's not an easy thing to get kids out the door, especially when they need to have clothes and shoes on with their hair brushed.  Add on to that pulse-ox machine, check and hook up a full O2 tank, emergency meds added to diaper bag, feeding supplies in, etc. and it makes leaving the house an insane proposition.
 

But more than that, there are the emotional preparations that must take place.  Cam needs to be "in a good spot."  Maggie needs to be snuggled in preparation for everyone paying attention to Cam.  And I need to prepare myself for reactions.  The hardest reaction to "get over" ahead of time is from the mom's whose ultimate goal for their children is protection.  These people shield their children from us, so their little ones won't see the sick baby that would confuse them, hurt them, and make them question their Mommy, "Why does that baby look like that?"  Thankfully, such experiences are rarities.


There are also those who look sympathetically and sorrowfully as we walk by.  These people mean well, but are a constant reminder that my life isn't "normal," and they feel sad and sorry for us.  It is kind, but not always the reminder I need:-).


However, I have tough skin (I am a Shaw- for those who know what that means;-), and last week we got ready and walked out the door.


Battle one is always with my pharmacist.  Some days she is happy; some days she isn't.  Last week was a good day, so I felt great leaving with our pack of medicine for the week.  We headed to Target on a high note.  Battle 2 was somewhat unexpected.  I loaded up my stroller and a half with children, oxygen, and machines, and we tried to walk by the dollar section.  But there were so many things right there that would be perfect for Maggie's birthday party.  (BTW I am determined to give my daughter a proper 5 year old party this year...).  So we stopped and looked for a bit.  This was my fatal error because Cam became fussy, so we attracted extra unwanted attention and still had to get to the back of the store to get the right supplies for Cam's feeding.  I ended up pushing a stroller filled with stuff and holding the kids/oxygen. (I am sure there are other mother's out there saying "Hear ya Sister").  Target is always hard- lots of moms and kids- so the extra stress made me want to just go home.


But no!  I wanted desperately to get this gift for my friend- not just an IOU.  So to Bed, Bath, and Beyond we went.  There was no point in using the stroller with Cam's fussiness, so I just strapped on diaper bag, purse, oxygen (equivalent of at least 30 pounds of stuff), plus held Cam in one arm and Maggie's hand in the other.  I was close to tears just walking into the store.


But there, God showed us such mercy.  While I waited for the registry to print out, the employee (Ben I think...) sat with Maggie, who needed some attention at this point, and told her the most wonderful story about these "frogs in a can" (Some kind of cleaning supply I think) that they had sitting by the till.  She wanted to know if the frogs were real, and he told her about these flying frogs who talked and sent beautiful colors out behind them as they flew.  Anyone who knows my Maggie knows this was perfect for her!  


We set out to find a gift in better spirits thanks to his kindness. It got hard again as we wandered about, trying to find someone we could afford.  Eventually I found myself staring blankly at plastic kitchenware.  I found I couldn't go one step further with all this heavy stuff, so I literally dropped all my bags and we just huddled in the corner of B,B,&B for several minutes.  No one seemed to notice us, and eventually I found enough strength to strap on all my gear, pick up the kids, and keep going.  


We found something cute that we could afford, got back to the till to check out, and, ignoring the looks around us, were about to race back to the car when a woman stopped us.  I turned around with dread (knowing I was going to have to explain what was wrong with Cam again), when she asked just one simple question.  "May I know your baby's name?," she asked, "I would like to pray for him tonight."  That was it, and it was perfect.  God sent an angel to remind me, right in Bed, Bath, and Beyond, that He loves me, that I was not alone, and that He has great plans for Cam to manifest His glory.


So for those reading this who are looking to the road ahead, I hope this story helps you see what it will be like.  Hard and beautiful, but always seeing the glory of God right before your eyes.  Your face, like Moses', may always be shining (possibly because of your own tears:-), but what more could a child ask for than such love and attention from her Father?  And what more help could come in sorrow than knowing that we have a resurrection hope- our work will not be in vain!


p.s.
Laura writing here: I wanted to share this, which was on Evelyns facebook wall several weeks back - it just seemed to go along with the above story:


Evelyn wrote: “Did my big grocery run yesterday- in heavy rain, looking very pregnant, and carrying a 20 pound kid w/ O2 in my arms because he was so sick. Not a single person offered to help at any point during the day. Today, I made quick stop at Walmart, in sunshine, with Cam not actually hooked up to the O's. Joe- the special needs guy who collects the grocery carts- asked if I needed help. He asks me if he can help every time I go there. Joe gets my vote for "man of the year."


-----
Big sister Maggie and Cam
Laura here again...


I think Evelyn’s stories, her real-life stories, offer something for everyone to take away when reflecting on “CHD Awareness” - but it should not be pity. No heart-mom wants you to “pity” the miracle of a repaired-heart and the extra time (hopefully a LONG time) gifted to their child. “Heart Mom’s and Dad's” rise to the occasion of caring for them and sometimes the going gets very rough. These kids are warriors beyond their heart surgery - some CHD’s kiddos must battle hard with something as  “simple” as the common cold; but the CHDer’s mom’s and dad’s, they’ve got this...it’s their baby and believe me, they are okay in “not okay” land. (Your support and your care matter, they do need and appreciate that, just want to be clear, as I'm not saying they don't need family and friends to be with them and there for them...far from it.).


But I do love this story - and yet it’s sad... we are a funny culture. The boundaries we create surly are interesting - that it sometimes takes someone inherently less “tuned-in” to said culture to actually offer to help kinda puts us all to shame. However, sometimes, people "get it right" and give examples for all of us to follow. So, let's all aim for less hesitation, more bold acts of love - - lend a hand to an overwhelmed mom by helping with the kids, dare to ask the name of a child so you can pray for her or him and ask if you can “give a hand with that o2 tank” - and you can do it in honor of Cam!


And as you remember Gwen, I hope you will pause to be astonished at the well-working heart that formed perfectly in you or your child/ren in the first 7 weeks of existence; one long, appreciative-pause.


The formation of the heart, the process by which it grows into a four-chambered pumping machine is amazing to me - jaw-droppingly amazing - and that it ever forms correctly... ?!?!


Add to that, doctors who can repair the tiniest of hearts - it is an amazing world we live in. I look forward to seeing the funding for CHD research increase. I look forward to seeing that research flourish and unlock more secrets so that the CHD children of Gwen’s generation can be blessed with medical treatments that make today’s miracle-practices look archaic and clumsy.


For Gwen, for all those she introduced me to, I will continue to raise awareness and rally support for CHD causes. I count on not walking alone. And for that - to the friends and family I’m blessed with, thank you! 



HAPPY 3rd BIRTHDAY GWENYTH!

every day.

miss you... every day.