Sibling Love

First of all, thank you for the words of encouragement.  Brought a smile to my face and made my heart full of love.  I hope I can live up to your expectations with the ramblings from my head. 

As I thought about what to write about today, that sneaky little thing called "mommy guilt" made its way into my head.  Do any of you deal with that ugly feeling?  I dislike it and how it makes me second guess my feelings and actions.  So, to deal with said mommy guilt, I must talk about my two equally amazing, equally loved older children who I feel sometimes think they come second, well actually third and fourth, in our family.  When your life gets turned upside down like ours did eleven plus years ago, priorities get changed and well pretty much your life as you knew it is gone.  Your main focus becomes dealing with the chaos that comes with children with a life-threatening disease.  The girls have demanded a lot of Matt and I's attention and I know Delaney and Mason have been pushed aside on many occasions.  Am I proud of this, no.  Do I hate this, yes.  Would anyone else in the same position do the same thing, I would think so.  But still, you can't help but wonder if you have failed them somehow.  With that said, I am pushing those ugly thoughts out of my head and telling "mommy guilt" to go pick on someone else today.

Our first-born Delaney Marie, the Firecracker, is the description that comes to my mind.  She came into this world 2 1/2 weeks earlier than her 4th of July due date.  She has been strong-willed from the start but, that is what makes her the treasure that she is.  Delaney was almost five years old when the twins got sick.  She has a hard time emotionally dealing with their illness.  Back in the early days when we called 911 on a regular basis and the ambulance would take the girls to the hospital, she would run to our neighbors house where she felt safe.  After the chaos was over, she would come back home.  I know it is heartbreaking to her to watch her sisters struggle and if she had one wish, it would be to make them all better. One thing that I love most about Delaney is that she does not leave the house or go to bed without saying, "I love you."  Oh how I treasure hearing those words.  Although sometimes she goes off like a firecracker, she has a heart of gold and will do anything for someone she loves and cares for.  We have had our fair share of knock down drag outs but, I wouldn't change a thing about her.  She is strong, passionate and is not afraid to fight for what is right and what she believes in.  I admire her for that and love her more than words can say.  She is going to go places in this world. 

Mason Dean is the soft-spoken lone boy in the middle.  Delaney and I joked one day that her lack of patience was gifted to Mason.  She just can't understand how he is so patient.  The poor kid has to be to put up with three sisters!  He does not like confrontation, does not like to disappoint or be disappointed and he loves playing video games.  He is a gentle soul who has a soft heart for his little sisters.  While Delaney is scared of the girls' seizures, he is not.  He is my "go to" man when an emergency strikes and always stays calm.  One particular day, we were outside playing in the front yard and Lindsey had a seizure.  Mason ran in the house to get the oxygen for her and when he came out, he heard me yelling, "Two, I need two!!" as about 15 seconds after Lindsey went down, Lauren followed with a seizure herself and also needed oxygen.  The poor kid ran back in, grabbed the 2nd oxygen tank from upstairs and came back out winded and threw himself on the ground.  After he caught his breath and took in the environment with his two little sisters lying on the grass he said, "It looks like Call of Duty out here..."  It did look like a battle zone and we still chuckle about that crazy afternoon.  Mason, my lone boy who holds a special place in my heart.  The young lady that captures his heart someday is going to have a wonderful husband and I know he will be a great father.  Oh how I love that boy. 

So Ms. Firecracker and Mr. Patient, our two great kids who have learned many life lessons at a young age.  I hope that when they grow up and have families of their own, they will look back at their childhood and know that we loved them unconditionally and never, ever were they second fiddle.

My husband thinks we need to have a reality show based on our lives.  This is the closest I want to come to bearing the soul of our family.  So here I am entering the blogosphere.  For the past few years, I have recounted our family's journey on a Caringbridge site for our twin daughters.  A good friend of  mine has told me for years that I should "write a book" about our many adventures in life dealing with two little girls with a really big medical condition that has forever changed our lives.  That "book" begins today.  Seizsters:  Two Girls....One Journey.

Many of you know our "story" but; for those of you who may not, here is a little background.  My husband, Matt, and I have been married for almost 17 years.  We were blessed with four beautiful children.  Delaney is 16, Mason is soon to be 14 and Lauren and Lindsey, our identical twins, will soon be 12 years old.  Add to that our dog, Scooby, and our family is complete.  Back in 2002, when the twins were just six months old, our lives were forever changed when they started having uncontrollable seizures.  They were healthy babies up until the age of six months when the first seizures struck.  After many seizures and many hospitalizations, at the age of one year, the girls were diagnosed with a little-known disease called Mitochondrial Disease.  You may be saying, "mito what?"  Believe me...so did we.  As soon as I heard the words, "progressive and incurable" spoken by our doctor my brain stopped listening and my body went numb.  And that is when our journey with Mitochondrial Disease officially began.       

Fast forward 11 years and here we are today.  The girls are still having uncontrollable seizures.  They are developmentally delayed because of them and their underlying disease. They face a giant, uphill battle every day of their lives.  What you will also see today are two resilient, almost always happy, sometimes moody, loving little girls who will say "I am so lucky" because in their lives....there are no small things.  They don't see themselves as two little girls with a really bad medical condition.  They see themselves as two little girls who are so lucky they get to go to school, watch their favorite shows on TV, get to snuggle with their mom and dad and talk to their grandma and grandpa on the telephone.  What I see are two little girls who have touched the lives of nearly everyone who has been blessed to meet them.  I am blessed beyond measure to be their mother and look forward to sharing the laughter, tears, heartaches and heartwarming stories of these two little girls who have a whole lot to say.