Socially Awkward!

     Friendships...what came to your mind?  How many friendships do you have, and how easy were they to form?  For most of us, pretty easily I'm sure.  For the majority, this is something we learn as we grow, and learn through social situations.  Learning how to meet them, and grow them into lasting friendships, is so important as we grow as individuals.

     Believe it or not, for many CHD children this "simple" social interaction, is a huge struggle. They try to make friends, but the process just doesn't come easy.  The results for many CHD children is so sad.  Some are misunderstood by their peers, some are made fun of, and many have one or no friends at school.

     Let's take my Cora for example.  She strives to make friendships and share her giving personality.  However there is such a social awkwardness she faces daily that keeps her from friendships at school.   Cora can't read facial expressions or body language given off by others.  She doesn't realize when enough is enough, or even when she has gone to far.  She tends to try to hard by exaggerating the story, just hoping for one friend.  Just one person to befriend her and chat with her daily.  This creates frustration, impatience, and dislike in her peers, that leads to de-friending my daughter.  Everyday my daughter awakes for school asking me not to go.  She tells me she try's so hard to make friends but she fails everyday.  I can see she is lonely, looking desperately for some kind of friendship.  I watch her get so frustrated to the point she breaks down, begging me to please let her stay home.  It breaks my heart every time.  Every part of my being wants to cuddle, hold, and cry with her.  The years of protecting Cora has become harder and harder.  I know I must loosen my Momma Bear grips to let her learn and explore, but it is so brutal to feel her pain every single day....praying every night that God will magically place a patient person in Cora's life who truly wants to be her friend.  Who can get past her health and mental issues, and just be a kindred spirit friend!  I just simply can't imagine what it's like for her to face yet another obstacle...even one like this, that I take for granted.

     So what do I do?  I wish I had a magical answer for my sweet CHD daughter.  I wish I could tell her everything will work out.  But honestly what teen wants to hear that?  What person, teen or adult, who knows she has social issues wants to hear things will get better.....eventually?  So what our family has begun to do seems to bring a little sparkle to my sweet daughter's eyes.  My hubby and I spend much time with her role playing.  Showing her how friends interact, how body language and expressions are hidden signs.  We have discussed as a family behavior therapy, which will be two fold for her.  It will give her a chance to express her raw feelings, and it will be filled with teaching moments for her.  Other than that we are still learning as we go.  

     If there is one thing I try to remember each time I become overwhelmed is "The Lord will guide you continually." Isaiah 58:11.  I may not always see the results I pray for immediately, but I know I, and Cora, will be guided continually!

Blessings Until Next Time!

Drena

A Special Celebration!

     I am so blessed God made me a Momma.  I am so grateful to be a Momma to my CHD daughter, Cora.  Sometimes even I forget the simple joys....like the celebration of her birthday! 

  My beautiful blue eyed Cora was born into our family, 14 years ago on Friday January 23rd.  Seeing her big blue eyes once she was born melted my heart.  I was hooked from that moment, and felt a rush of love I didn't know could ever exist.  This sweet little thing has endored so much on her 14 year journey, and has faced things most of us will never have too.  But each day she continues to beat her odds.  Each day she reminds me that's it's ok to let go for a few minutes.  Her presence in my life....in our family, makes me appreciate things I never dreamed I'd appreciate.  I must admit, sometimes, I get so caught up in being that protective Heart Momma, that stopping to smell the roses just doesn't occur.  I think about her quality of life, her education, her future, and her life expectancy.  Then.....this sweet little thing comes up to me and gives me a hug, or puckers for a kiss.  Only then does she bring me back to realize, I can't control everything, BUT......... I can breathe in and welcome God's sweet gift.  A blessing he didn't just give me 14 years ago, but a blessing I get to be with every morning she opens her big blue eyes!

  So today, my Cora Evette, I celebrate you!  May today be a special celebration of your BIRTH, and life.  May it also be a remembrance of God's gift and blessing!  Happy 14th my little miracle!  I love you more than words can write or say!!!!

Blessings Until Next Time!

Drena

Winter Blues!

   Seasons change and our bodies begin adapting to the new wintery season.  We start taking extra vitamins, we bundle up, and add extra layers of clothes.  Anything we can do to stay healthy and warm.  For our family, Momma nurse arrives.  Caring for a CHD child with an extremely low, to non existent, immune system makes the wintery season......not so much fun!  Now don't get me wrong, the entire winter isn't a miserable time, just 95% of it.  For my daughter, Cora, it's just like any other winter.  Since this is all she has ever known, all the preparations, changes in schedules, and daily quizzes and reminders about her health, are as she calls...overkill.  But for me, the constant check list is running in my mind.  With winter comes all kinds of viruses and the flu.  For this CHD Momma it means a cough can become bronchitis, a cold could turn into phenmonua, and the  flu could lead to hospitalization.  This is a truth any CHD child faces every winter season.  This year hearing and knowing several CHD kids who have been hospitalized due the flu, well, that has me on full alert 24/7.

     The preparation for this CHD Momma begins in the fall.  Knowing all the holidays are around the corner, I start figuring out what I have to do to prepare Cora, our home, and our family.  My goal, of coarse, is to get Cora through the fall and winter sick free...or as close as I can!  But.....It is also important that I do all of this and maintain a normal "kid" atmosphere for her.  I want her to experience everything any other child experiences.  Jumping in leave piles, playing in the first snow, enjoying the first day off of school due to inclement weather.  All the fun things any other child gets to experience!  

     So have I sparked your curiosity yet?  I bet your thinking.....what in the world does this lady do?  I shall share.  In the fall I begin stocking up on Lysol spray, Lysol wipes, sanitizer ( large and small travel bottles), vitamin C, and face masks.  I Lysol down all her coat, book bag, and any other school belongings after she goes to sleep.  I Lysol wipe her lunch sak inside and out.  I Lysol all the door knobs, inside and out, each night after everyone goes to sleep.  I make sure her travel sanitizer bottle is full.  I make sure there are multiple large sanitizer bottles distributed throughout the house.  Then each morning I remind my Cora to make sure to wash her hands with soap and water as often as she can.  I remind her to use her sanitizer all day at school.  I remind her there is absolutely no hugging friends, and she is to keep distance.  Coughs, sneezes, or wiping of noses without washing hands, could lead to severe illness for her.  I try to gently remind her that if the illness get worse within the school, she will have to wear a mask for her protection.   I know she hears me because she roles her eyes and reminds me she hasn't had to wear a mask since she was a toddler.  Maybe it is overkill but, even at 13 years old, it's important for me to drive home the severity of what can happen.

     Knock on wood, so far we have been blessed to be mostly healthy.  I try hard at Christmas time when everyone is together, and it's a germ fest, not to panic.  I keep my eye on her, and remember as much as I'd like to keep her in a bubble, it's just not possible.  So I will continue my routine of cleaning, reminding, watching, and loving my CHD daughter.  Carrying the responsibility of making sure she makes it through the winter unscathed by illness.

Blessings Until Next Time!

Drena

Starting A New Year!

     Happy 2015 to everyone!  As the new year begins I am reflecting back at 2014.  My discovery on the journey reflection has been eye opening.  I debated whether or not to write a blog post about this for some time now.   All along praying for guidance.  I feel like I have been given the ok to share this insight.   To share the importance, and big lesson I received last year with each of you.

     For myself, as I'm sure for many, 2014 was a challenging year.  My family faced many trials and tribulations.  Through this process, God has taught me a great deal about myself.

In 2014 I have experienced many emotions.  Frustration, sadness, elatedness, sorrow, pure joy, wickedness, helplessness, anger, doubt, disappointment.  I'm sure there is more to add, but you get the point.

     But through all these emotions I've experienced, there was one constant that remained throughout it all.  GOD!!!!  Every bump and set back I encountered this past year I was shown light somehow at the end of that tunnels journey.  The emotional roller coasters I encountered last year were learning moments God shared, armed, and walked me through.  Some of them I must admit I believe God carried me through.  Non the less, I didn't face each challenge alone.  Without my faith who knows what different wrong paths I would have faced in 2014.  

     So my reflection revealed something eye opening to me!  In my darkest moments God is present with me.  Breathing and building faith within me!  When I fall, it just enough to remind me I need to lean on my God......our God!  When the brighteness shines in my day, through my children's eyes, that's God telling me......I made it!!  I made it because God's love never fails or gives up!  

     My resolution for 2015..........another year like 2014 is ok with me!  I will continue to learn to welcome, and deal, with all the emotions I encountered in 2014.  I know God will be there walking with me through them, or carrying me!  Either way I will see the light he wants me to see, at the end of each of those journeys!  So welcome 2015!!!!!

Blessings until next time!

Drena