5 Reasons I Celebrate CHD!

     Everyone hears that everyday is a reason to celebrate, right?  It is a day God has given us to make a difference.  A time for each of us to share God's son's story through our life. But how many CHD Parents, do you think, have said: Hey lets embrace and celebrate Congenital Heart Defects today?  My guess, NONE!!  Oh but there is my friend!  There are so many reasons to embrace and celebrate Congenital Heart Defects each and everyday!

     I know it sounds silly, maybe even a little crazy, but stay with me.  Let me share 5 special reasons why I have embraced and continue to celebrate having a CHD child!

1. I wouldn't love as intensely as I do!  

2. I have learned to embrace and celebrate every small victory!   Without having a CHD daughter this wouldn't have happened.  I would have continued being a big picture only kind of gal, and miss out on all the beautiful small blessings!

3. I have learned to not wish away the moments I'll probably want back one day. Good or bad they are moments special to me, that have in turn assisted in me being a better, more congenious Heart Momma.

4. I have found peace.  Sure days are difficult and sometimes I struggle to make it through, but, looking at my 15 year old heart daughter.....I find peace.  She keeps me grounded and pure!  Without her, my journey would be troublesome and lost.

5.  I'm aiding in bringing awareness on this scary and life threatening defect!  Even though my part may be small, I believe sharing our journey helps raise awareness in some way to another.

    I'm sure there are more reasons to celebrate, but these are five that I hold close when we have our rough days.  Those moments when we feel we just can't put one more foot in front of the other!

     I have learned to embrace having a daughter with a Congenital Heart Defect. Not because I have to!  But because I was lucky enough to be chosen by God,  to be her Momma!  That alone, to me, is a reason to celebrate!

Blessings Until Next Time!

Drena

A Mighty Journey!

    One step forward and two steps back.  This is something my daughter has struggled with since her first breath.  Seems like there is always a stumble in this sweet child's day.  

     So one of the major things Cora has been dealing with, as she continues to grow, are migraine headaches.  The headaches for my CHD daughter, are just so crippling for her.

     

     Her migraines started rearing their awfulness, when Cora was in the 3rd grade.  At first they were fairly far and few between.  However as she continues to grow, they have become more frequent and more difficult to manage.  They begin with sensitivity to light, then her temples and very back of her head begin pounding.  Then the uneasy stomach begins, accompanied by dizziness.  The pain and pressure becomes so intense that Cora is sick to her stomach.  After several very intense hours, and multiple vomiting episodes, her migraine begins to subside. But the process has already taken its toll on her, and she is exhausted. 

     There are no words to explain how horrible it is as her Momma, knowing I can't make her pain go away. Due to Cora's heart condition, traditional headache medications aren't an option for her.  The side effects they would have on her heart just aren't worth the risks.  So we are left with very limited options.

     We recently have identified some trigger areas that start these migraines into motion.  The biggest trigger we have found associated with Cora's migraines is the heat.  Being outside like normal kiddos for hours at a time, in the spring and summer, isn't something Cora's body handles very well. She gets over heated easily, and has a hard time breathing.  As the humidity grows higher and higher, the probability of Cora getting a migraine drastically increases. The combination of both, builds the pressure in her head to the point that she goes from no headache to an instant, intense migraine. Cold packs, and cool washcloths over Cora's eyes and temples, seem to bring a small amount of relief to her.  However until she can release the pressure build up, always by being sick to her stomach, the intensity stays put.

     Lately though, her migraines have changed their standard course, and she is suffering them during the winter time as well.  We haven't figured the trigger for these, so we will continue to journal each episode, as her Cardiologist has suggested.

     Unfortunately I still find myself hovering over her more than I should.  One of my biggest fears....a full blown migraine will arise debilitating Cora, and I won't be there to help her.  It has become a very challenging and delicate balance for myself, to let go.  I realize she's 15 but....well how do I say this.......I want to continue to protect and shield her from everything!  I know that coddling her will only prohibit her ability to function independently, but I have been very protective of her since birth.  

     As Cora and I continue our journey together, we will need to lean on each other.  I will need to find a delicate balance of knowing when to open my arms to let my baby sore high.  For my daughter, I pray she will be patient as her Momma stumbles to find her own way. One thing holds true.....Our journey together will be mighty!

Blessings Until Next Time!

Drena