Dear John Paul,

So many times when I have sat down to write you...you were just a few steps away.  I would stop my letter to suction you or check your diaper.   That is different now.  Last Wednesday afternoon, you went to heaven.  I know that now, I don't have to tell you what is in my heart.  I don't have to explain to you what happened.  I know that you know God's plan even better than I do now.

Your wake and funeral were amazing.  I know your view of it must have been unparalleled, but even from here...it is hard to express...the numbers of people, many I didn't even get to see or greet, so many family members and friends pouring out their time and skills and love to make the days a perfect expression of gratitude for your life.

The days leading up to your death were intensely prayerful.  Priests praying many Masses, Stations of the Cross, writings of saints, rosaries....all of these again and again confirming the gentle urgings of the Holy Spirit that your work on earth was done and that you had much more awaiting you in heaven.

It wasn't how I thought it would be....I always dreaded a caregiver's mistake being the reason you left us.  Doctors prepared us for respiratory failure in the course of a secondary illness, a pneumonia or cold or infection.  None of these things happened.  Ultimately, for you, your disease did progress in an unexpected manner...maybe there was a second diagnoses that doctors could not discover, maybe it was just your version of SMA...we will probably never know.  But towards the end of your life, if you could see at all, it was not discernible.  We learned in the week prior to your death that a large part of your brain had wasted and was replaced with fluid.

I hesitate to even write those things for fear of being misunderstood....your life even in the very last moments, was beautiful and infinitely valuable.  But I do know that the Holy Spirit uses the physical truth in order to help open our hearts to His will, that we may not have otherwise have been open to hearing.   I can only compare it to a vocational discernment.   In the case of marriage for example, the person seems right, the timing is right in a very material sense, but in order to have the certainty and confidence to move forward, there must also be an inner conviction that this is God's will.  We are just cooperating, unable to see how His Providence will play out in its entirety.

I miss you immensely now.  Especially as the beautiful events celebrating your life have come to an end and we have to keep moving.  The house is quiet....for a kid who couldn't make a sound yourself, you came with a lot of background noise.  But more importantly, I need a mission.   Yes, I have four other kids to raise and get to heaven.  You would think that that would be mission enough...but I had that mission before you were born, and you added such an awesome way of bringing all of us closer to Christ.  Don't get me wrong, you still do....but your mom needs help in getting into a new groove.  I'm not used to having the added family dynamic of a saint to lean on.  

I know you will help me gradually discover God's plan for the family you couldn't take with you.

I love you more today,

Mom

Dear John Paul,  

Yesterday, you turned 14 months old and exactly one week from today marks one year from the first time we brought you home.  The first time home only lasted 12 hours before you had to go back...but it was the beginning of a new chapter in our journey with you...enjoying having our whole family together.

I feel like we are starting on another chapter of your sweet life now.  It has become increasingly evident that, against all odds, you are struggling with something more than SMA.  A few weeks ago, you had a second MRI of your brain to monitor the increase of fluid in the ventricles of your brain.  The doctors did see a slight increase compared to your previous MRI that showed a significant amount of fluid, but are referring us to a neurosurgeon for a full interpretation and to assess if they would recommend doing anything to treat it.   Needless to say, I am very interested to hear how they feel it is impacting you and what they would expect to see in the future.  For that matter, I would love for someone to come up with a reason it is happening.

On an unrelated issue,  the doctors have tested and retested your urine and have found both times, that you have elevated levels of something called homovanillic acid.   This is one of the indicators, along with a few other symptoms that is causing concern that you could have something called a neuroblastoma.  It is a type of cancer that attaches to nerve tissue.   I won't lie.  When I got off the phone with the doctor who told me this I started searching the house for hidden cameras.....seriously?????  Is this some sort of sick joke????  I feel pretty silly even writing it as a possibility.   I hope I am being silly.  We will meet with the neurosurgeon one week from today and they are trying schedule the scan for the neuroblastoma for the same day.

I am trying very hard to just deal with known facts and not hypothetical situations right now.  Its not easy.  I feel the need to remind myself a lot that all of this medical mumbo jumbo is so complicated but your life is much more simple.

I love you John Paul.   I can't wait to snuggle soon.

Love,
Mom