Make a Wish

This is Ella.  Through another set of very random events, I was fortunate enough to be put in contact with Ella's mom not long after Haven was born.  Ella and her mom will always hold a special place in my heart because they were the first heart family I connected with and have been a huge support to me since this whole thing started.  Haven and Ella are both seen at Children's Hospital Boston and they share the same amazing surgeon.  Ella only has the right side of her heart, and Haven only has the left.  Too bad we can't smoosh them together so they can have the full functioning heart they both deserve.

It's sometimes hard to conjure up just how alone I felt when I first received my daughters diagnosis.  But after meeting this family, who is also from Massachusetts, who shares the same surgeon as we do, with a similar three surgery path, and a mom who could relate to all the fears, worries, and stress I was experiencing -- it was like someone had sent her down to me from heaven.  I have spent countless hours on the phone with Ella's mother, sharing war stories, asking questions, worrying together, getting angry together -- and most importantly laughing together.  You would think the severity of all this would leave little to laugh about.  But laughter is the greatest medicine in the world.  And Ella's mom and I have overdosed on laughter more than a few times through this mess.  I will be forever indebted to her for our friendship as heart moms.

Ella is six months older than my daughter, so I have carefully walked the past year and half alongside this family who has been gracious enough to share their experiences with me so I have a better idea of what lies ahead for my own family.  Of course, just like the doctors originally said, no two families have the same path.  And in the case of our two families this is also true.  Sweet Ella has had many more struggles than Haven has had.  She is still has a feeding tube and struggles with many feeding issues -- something we fortunately have not had to deal with given Haven's feeding tube was removed prior to us leaving the hospital.  Ella also has cataracts which will require her to undergo eye surgery on both eyes on top of the three heart surgeries she has already faced.  Her heart rate is still pretty high -- even though she successfully has completed the Fontan (the surgery we are awaiting in April) and she has countless more appointments than Haven does in between surgeries as they try to figure out the cause for some of her additional symptoms.  When something like the heart is working at 50% -- you can imagine the effect that has on the rest of the body.  So, it's a constant mystery, a constant struggle, and yet here she is, three year's old, has survived three surgeries, countless additional procedures, caths, and she even survived full heart block for 45 seconds during her last hospitalization.  This child is indeed a miracle.  And she has proven that fact over and over and over again to all of us.

After three years of constant medical worry and stress in this family, Ella, her older brother and her Mom and Dad were sent to Disney World by the Make A Wish Foundation this past week.  No one, and I mean no one, deserves it more than this family.  Even their healthy older child was recently diagnosed with cataracts -- something the family pediatrician missed amidst everything that was going on with Ella -- and this poor mother and father had to watch their healthy son go through two eye surgeries of his own just a few short months after Ella's most recent heart surgery.  I mean seriously?  Can you imagine?  Talk about shaking the confidence of this family...this was their healthy child....and they had to take him into surgery....twice....on top of everything else....unbelievable.

So here they are, soaking up the sun and enjoying their visit to "Mickey's House"as Ella calls it.  A family that has had quite literally no breaks from doctors appointments, visiting nurses, hospitalizations, getting glasses for practically everyone in the family, all while trying to maintain some kind of family normalcy.  Inside all of the challenges that come with having children with medical issues -- there is nothing more special than having an opportunity like this from the Make A Wish foundation to have actual real fun as a family, a chance to make fun family memories around rollercoaster rides and Sea World instead of hospital visits and doctors appointments, a chance to be together and share a bunch of laughs in the Florida sunshine rather than worrying about your sick kid, the kids worrying about a stressed Mommy and Daddy, and a family of four trying to maintain the stamina it takes to keep up with the constant and unrelenting schedule of appointments that this family coordinates on a weekly basis.

Thank god for organizations like the Make A Wish Foundation.  Because a family who has so gracefully managed the hand they've been dealt -- deserves one week -- just one week away from it all  -- to celebrate all that they are and all that they hope to be -- beyond the medical setbacks.  I have so much respect for this family and how they manage everything.  I look up to them and draw my own strength from watching them weather each and every storm.  

There is one thing that is simply undeniable.  Having a heart condition, while it can take away a lot of things -- it can't take away the sheer joy of a little girl on her first trip to Mickey's House :)