Birth and Death

The day Eli was born we found out that it wasn't just his kidneys that were affected and that there was ALOT more going on and that we had a sick little boy.

 On his 1st birthday we learned that his vision and hearing were severely affected and he failed his sleep study showing that he needed increased help breathing at night as well as day time.

On his 2nd birthday he was incredibly sick and we were fighting for our lives to avoid a trach.  He was struggling deeply with secretions and breathing.

On his 3rd birthday palliative care joined Eli's team and the sicknesses were taking a toll.

On his 4th birthday we can only visit his grave as our baby is GONE.

I am unsure how many times over the course of the years that we were unsure if he would make it thru the night.  The words "quality of life" were mentioned more times than any mother should ever have to hear.  Progression was visible and measurable.   We lived in a hospital more than at home.

Yet my Tiny Hero thrived.  He was always up for the challenge.  He was so strong and such a fighter.  He didn't care what the doctors and experts thought or expected.  Eli carved his own path thru this disease, thru the world and thru our hearts.

Here I sit exactly 4 years later remembering in detail the day my tiny man was born, and remembering in the detail the day he died.  This shouldn't be.
There should be wrapping paper, bows, gift bags with tissue that he can easily rip open.  Giggles and laughter.  The kids singing happy birthday.  Cupcakes with frosting.  The nurses turning their heads as tiny drops of frosting is placed on his lips.  His little "cake" should be out with the "candles" lit up.  New toys for him to explore, a huge stacks of books for him to read.

We knew we needed to do something.  A bit to honor Eli and honestly a bit to keep us moving and not having to much down time for our minds to roam.

I have been participating with "I Run 4" and "I Run in Remembrance" Groups so we decided to head out for a walk in memory of Eli.  We decided that we wanted to do 4 miles since it's his 4th birthday.  All 6 of us headed out to the park, and walk we did. We ended up "donating" 28.2 miles total in honor of our little man.

Now I'm at the end of the day feeling completely spent and wondering now what.  Thanksgiving was tough.  Then I was immediately thrown into Eli's birthday.  And Christmas is right around the corner.  I feel drained and have nothing left to give.

My brain is struggling so much to wrap around the fact that he is GONE.  I never knew a birthday could feel this way.

I want to end with a quick thank you to our friends and family who have been checking in with us and letting us know how much you all care.  I apologize for not responding to each and everyone but please know that we as a family all read your comments and messages and emails!  They definitely warm our hearts!  Our little man was amazing and touched so many lives and we are so honored to have been his family.

R.I.P

Elias "Eli" Richard Tomkins

Our Tiny Hero

December 1, 2009 4:02pm

To

April 28, 2013 4:08am

Happy 4th Birthday My Beautiful Boy!!!

You are forever missed!