Thank you? Right back at you woman!

A few weeks ago, another "heart mom" (a mom who has a child with a heart condition) posted a huge thank you to many folks outside her immediate family and friends.  My name showed up in that post and I suddenly realized that she had NO IDEA how much she also helped me and how much I owed her a huge thank you in return.

Here is what she had to say directly to me:  @Marcia Fletcher - THANK YOU! I remember stepping off the elevator at ACH and just hugging you. Thank you for coming to the aid of a mommy in need when you didn’t even know me. You reached out to a stranger and helped me so much. You guided me through my hospital stay and helped me deal with that one bad nurse. I love you, girl!

What follows is my response to her.  I felt it deserved a post of its own, especially since I doubt she has any idea that she helped me while she and her son (and their entire family) were in the worst struggle ever.  It is proof, that when we can't possibly see the world outside of our own mayhem, we still may have God working through us when we don't even realize it.  I firmly believe that is what happened and God led me to her for more reasons than just my opportunity to help her, for she also helped me.  

What she does not realize is that I was still desperately seeking a way to "make good use" of my experience with Kale and his heart condition and all that transpired with his heart journey (which still continues) at Arkansas Children's Hospital (ACH).  You can read more about that here:  www.caringbridge.org/prayforkale

Back to the story at hand...I took a break at work and checked facebook.  A friend from back home had posted something about praying for a family who had a newborn who had just been taken to ACH and the problem was in the baby's heart.  I don't remember who the mutual friend was between this other heart mom and myself.  God was working and that is all that matters.  I immediately felt compelled to go see this family whom I had never met.  I am pretty sure I got the contact info from the friend and called the "new heart mom".  Truthfully, its all a blur.  I can't fully describe the feeling I had that day.  It still brings tears to my eyes, 3 years later.  There was a surge of emotions and fulfillment that overwhelmed me.  Finally, there was an outlet of good use for my experience of having my baby nearly die and then be diagnosed with a heart condition.  I had been waiting and needing that opportunity, God knew it, and it came that day.  

I went to the hospital, waited for an opportunity to meet the mom and just hug her.  In that hug, I hoped she would find compassion, understanding, and a sense of not being alone in her new journey.  I couldn't completely understand her exact experience and her child was definitely in a lot worse shape than Kale had been (her child had required immediate surgery), but I did know what it was to have the shock of your supposedly healthy baby being admitted for a heart condition.  I understood how hard it is to grow this child inside you, and then have to stand back feeling defenseless and completely incapable of helping as your child fights for his life.  Its a lot of emotions and feelings, but most of all its numbing.  Your world, outside of what is happening to your child, seemingly stops.  In the aftermath of our experience with Kale, I tried to seek out other parent's of children with his condition.  I found very few, and none were local.  Kale's condition rarely shows up in young children, let alone a newborn.  I wanted more than anything for someone who had "been there" to hold my hand because I had felt so thrust into the experience, blindsided, and I knew that I had survived on pure faith from the moment I stepped off the ambulance with Kale.  In that kind of experience, you don't know which way you will go with your faith until the moment comes, when you make the choice.  I never questioned mine, I had no time, I simply started praying in the ER and didn't stop until they said he was stable enough to transfer upstairs.  In that moment, I was completely humbled as I realized who this child truly belonged to--his Father.  For the past 17 days, I had thought he simply belonged to us and in this moment I realized how ultimately hard it is to let go of your child and have complete faith in God to either let you have more time with the child or realize the child's life on earth is complete.  There were times after the fact that I talked to God about needing a purpose of my child's struggle and our family experiencing this journey with Kale's heart.  God heard me.  

I listened to her story...her child's story and my heart broke for them.  They had a factor in their story that we did not.  Her heart child was the younger brother--there was a child trying to make sense of this madness that didn't even (does it ever?) make sense to adults.  I let her know I was there, that I wouldn't hover, and that she could call me anytime, day or night.  Then I left the hospital.  

There wasn't a day that went by that I didn't think of her, her family, and pray for them.  She called me at once point, we talked, I reassured her that she was in charge of her child's care.  When your child is hanging on the thin balance of life/death, its easy to sink into a pattern of just agreeing with the nurses/doctors and never knowing when to question treatment and when to let them just do what they have been educated to do.  During our stay, we had a nurse with Kale who just wasn't a good fit for us.  It was hard to know if we were doing the right thing, but we requested a change of nurse.  Turns out that experience helped me when this heart mom experienced a similar situation.  I just remember reminding her that she was in fact in charge of her son's care and that she could request a different nurse too.  

In all the struggles, even the smallest of asking for a new nurse, I was able to take those experiences and use them to help someone.  I am not saying her child was only here to serve that purpose, in fact, what I am saying is far from that.  Her child, Jonah, had a much bigger purpose.  He taught his mom (and many others) so much in his short life on earth.  It just so happens, he gave someone else a chance to fulfill a need as well.  

I still keep in touch with Jonah's mom.  I haven't reconnected face to face since we moved back to the area where she lives.  Yet, thanks to social media, I know what is going on in her life.  I know she celebrates Jonah in every way possible.  She fights for him still, even if its just for decorations to go on his grave.  She has taken that motherly love and found a much needed (from every side) avenue to use her talents and her loving heart.  If I have my information right, her family is in the final stages of becoming a foster family.  She doesn't know it yet, but we will have a bond with that as well.  God works funny that way.  

She has a blog and lately she has been going "back in time" and looking at the days of the life of her son, Jonah.  You can check out her posts here:  http://ourlifewithanonlychild.blogspot.com/

Challenging the Egg

It amazes me how much my kids can be alike, yet so very different.  When it comes to food, the similarities and differences are glaringly obvious.

Scout LOVES to eat.  She will eat and eat until her belly looks like she swallowed a antelope.  She loves vegetables and fruits.  Kale, on the other hand, will only eat a small variety of things.  He despises all vegetables and most fruits.

Milk has challenged both my kids.  Kale had a very hard transition to milk, as it upset his tummy.  He had a tolerance problem with milk.  Scout doesn't tolerate milk either, but her reaction is a pure allergic reaction that causes her to sneeze, itch, and be blotchy.  This was verified by the allergist.  Do you know how many products contain milk or its derivatives?  Ugh.

Eggs challenged my kids as well.  At 16 months, after a lunch containing every major allergen (he had already been exposed with no previous reactions), Kale freaked us out by sneezing nonstop, becoming itchy, and turning red across his face.  Boom, he is allergic to eggs.  Fast forward to the testing for Scout to verify the egg allergy.  A week before the test, Ep asked if he could give her a bite of his eggs.  I asked if he wanted to spend the day at the emergency room and reminded him we would be paying later in the week to find out the safe way if she could eat eggs.  Sure enough, she is allergic to eggs (to which she reacted more strongly than the milk).  At the same time, over the last few months we have noticed no indications from Kale  that he was still reacting to eggs.  At one point, he was so sensitive that he would react after eating things made on the same machinery that processed another product with egg.  So, despite eliminating all egg products from his diet, he would still sometimes have a minor reaction.

Kale was again recently tested for egg allergy, and got no reaction.  To verify, the allergist wants to do an egg challenge which would require Kale to start with a very minute portion of eggs and eat more and more to see if he reacted...all at the doctor's office and for three hours.  Just getting Kale to try eating egg would be a challenge in itself--we knew that and so does the doctor and his nurse.

So, Ep and I have somewhat done our own egg challenge.  A few weeks ago, Kale was with his daddy and ate cookies that had egg as an ingredient.  No reaction.  So, this morning, I reintroduced Kale to pancakes--not the egg free kind that are similar to pancakes but just not quite the same--real pancakes made from batter that contains eggs.  The kid who never cleans his plate managed to quickly clean his plate and ask for seconds.  I looked him over--no splotches, no sneezing.  He finished that second pancake too.  He just walked back in to the kitchen asking if we had more pancakes...anybody know the best way to hide vegetables in pancakes?

The Mother Letters

I don't know about you, but I find myself often looking at another mom and wondering to myself "how in Heaven's name does she keep it all balanced"?  I know that I suffer from mom-comparison and I know I am not the only one.  Each mom struggles, celebrates, and wrangles her way through this adventure in motherhood.    There is comfort in knowing another mom has been there, done it, and for the most part survived--regardless of the trial or tribulation.  Now, there is proof.  Want the proof?  Then check out this book, The Mother Letters  which just so happens to be co-written by a guy who I knew back in high school.  He needed a "not store bought" gift for his wife...and ended up co-authoring a book.

Here is a HINT for all of you...they say mother's of all ages will enjoy The Mother Letters...and Mother's Day is just around the corner!