Letter to Self

Dear Me,

I saw you today.  I wasn’t expecting to, but I did.  The image of you has haunted me since and I felt like I needed to write to you.  It has been nine months since you held your sweet son as he made his journey from your arms to the Lord’s.  Terrified of returning to the hospital where he left this life, I have made all of the children’s medical appointments at the Primary Children’s outreach clinics.  Unfortunately, today’s appointment for Michael could only take place at Primary Children’s Hospital.  I have been dreading this day for weeks.  I carefully planned where I would park and how I would make my way through the hospital in order to avoid the areas that I knew would flood me with memories of unspeakable pain.  However, my plans did not take hospital construction into account and before I knew what was happening, I was in “the hall.” 

The hall was busy today, not at all like it was at 3:00 am on December 15th.  But as I stood there waiting for the elevator, trying to block out everything around me, including my feelings, I looked to my left and I saw you.  You were walking away from the CT room where your Jacob had just been rushed in for what would be his final CT.  You had just stared in complete shock at what the neurosurgeon described as “one of the worst scans he had ever seen.”  The stroke doctor had just placed her hands on your shoulders and said, “there is no easy way to tell you this….”  And your world came crashing down around you.  After trying to process what information the doctors were giving you, you walked down the empty quiet hallway with the stroke doctor's arm around you, lifting you up.  That is when I saw you.  All of your disbelief and horror was now mine again and I can’t stop thinking about you.  There is so much to tell you.

You will walk up to your son’s room where you will be surprised to see your husband.  How in the world did he make it to the hospital in 30 minutes?  He looks terrified, completely panicked and is standing at the side of the bed holding Jacob’s hand and crying.  Your eyes and face will tell him everything that he needs to know even before the doctors explain everything to him.  You will call dear friends to bring your children up to the hospital to tell their little brother one more time how much they love him and you will watch as they kiss his warm little face for the last time.  Your heart will feel like it is being completely crushed inside your body.  And then late that night, you will lie next to your small son in his large hospital bed and you will hold him and hand him back to the Lord.

You will be carried that week, by angels on earth and angels in heaven.  Mostly, you will be carried by your Savior.  You will have to make decisions and do things that no mother should ever have to do.  You don’t know how but somehow you make it through the week and you will bury your treasure during a winter's snow, just days before Christmas. 

During the next nine months you will experience a grief that is all consuming.  You will cry, everyday, much more than you will ever admit to anyone.  Please be gentle with yourself.  In grief support, you will learn that a mother’s tear is worth more than a thousand words.  You have a lot to say, most of which will only be spoken through those tears.  If you didn’t love your Jacob so much, his loss would not hurt so much. 

It will take many weeks before you are not terrified of leaving your home to do simple errands.  You will drive to the grocery store, park, and then turn the car around without ever going into the store.   You will be asked by strangers how many children you have and you will stare blankly at them not knowing how to answer.  The answer is seven.  You have seven children.  Six at home and one in heaven. 

You will worry intensely because so many resources will tell you that the divorce rate of couples who have had a child pass is staggeringly high.  Please do not worry about this.  Your marriage is strong.  This tragic loss only makes it stronger.  You recognize that your husband is the only person that truly understands… completely.  You both admire each other’s strength and commitment to your family.  You are so blessed to have him and his love. 

Nine months will pass and you will still have yet to go through Jacob’s room.  Everytime that you try, you pick up one of his toys or take a shirt off of the hanger, you stand there with tears rolling down your face and finally decide “not today.”

You discover a strange thing…you bury much of yourself with your son.  Not just your love, heart and immense devotion, but your abilities, strengths and interests.  Where you once found great comfort in music…you will not enter your music room for almost six months.  When you finally do, you have lost much of your abilities on the piano and are unable to play the harp without weeping.  Start slowly.  I believe that it will come back.  

You will loose your ability to keep track of time and even remember what month it is.  Trying to keep up with children’s activities and school assignments becomes very difficult and you wonder if you are loosing your mind.  What used to be simple for you, will take great concentration.  Again, try and be patient with yourself. 

Perhaps the most difficult part of the coming year is walking with each of your children through their own journey of grief.  They have lost their childlike innocence.  They are now all too aware that they and their loved ones are vulnerable and mortal.  I have no advice for you on this.  You can not take their journey for them.  They have to make their own personal journey through their grief.  But you will be with them, holding their hand and crying with them. 

Your priorities will change.  You no longer care if your house is a mess.  You will cut back on your children’s extra-curricular activities.  You will no longer feel the need to attend every school, community and church function.  Some may see these changes as laziness or poor decisions.  You will see them as reprioritizing.  You have seen what really matters in life.  You have a firm conviction that nothing in this life is more important than your family and your relationship with your Savior. 

I wish that I could have put my arms around you today.  While I desperately wanted to turn and run from the hospital, I also wanted to reach out to you.  I wanted to help hold you up and take some of the pain from you.  But I couldn’t.  You are in shock now and that shock will get you through the next couple of weeks.  The reality of life without your Jacob will settle in soon and as much as I want to tell you that the pain will lessen, I can’t.  You will learn to function in your “new normal” life without Jacob, but the pain doesn’t lessen.  That  will happen when the resurrection comes and your arms are once again filled with your sweet Cub.  Until that time, be patient with yourself.  I will think of you often.
                                                                                                                           Love, Me

Letter to a Friend

I recently reread a letter that I sent to a remarkable friend several months ago.  My message was a response to a condolence email that my friend had sent me immediately after Jacob's passing.  I decided to copy a portion of that message here because it gave voice to so much of how I feel about my son…

…However, the thing that touched me the most was your email below.  I haven’t had the emotional strength to respond to most of the messages that Jennifer and I have received this past week.  We are very grateful for all of the kind and supportive things that people have said and we have received much strength from their words.  However, your message below contained a few short words for which I was unspeakably grateful and I wanted to express that gratitude to you.  Although I am grateful to you and your family for many, many things, it is your email below that prompted me to write you at this time.  I simply had to thank you for your message.

As you know, my beautiful son had Trisomy 21 (Down’s Syndrome).  Because of Jacob’s genetic condition, many people mistakenly believed that we loved our son but were somehow disappointed by his “limitations”.  The truth of the matter is that both Jennifer and I find our son to be the most remarkable individual we have ever met or ever hope to meet.  Jacob was, and is, my hero and the example to me of everything I hope to be someday.  He loved unconditionally, forgave instantly, found joy in the smallest of blessings, found self-worth in small accomplishments, and never forgot to turn to G-d (he would remind us on frequent occasion of our need to pray).  He carried a light within him that brightened the day of everyone that was privileged to come in contact with him.  He created love and joy where there was none.  He uplifted, and brightened, and taught.  I was so very, very, very proud of him.

Although we received many messages of consolation and love when we lost our Jacob, most of the messages seemed to focus on what we had allegedly done for Jacob.  At best, they acknowledged our intense love for our son.  When I received your message below, I openly wept, however.  It meant so much to me to have someone acknowledge the fact that I was not only filled with “loving”, but “proud” memories of my son.  It meant a great deal to me to have someone acknowledge that Jacob was (and is) an “exceptional little boy”, a “wonderful source of joy and love”, and that “he enriched the lives of each member of [our] family immeasurably”. 

I am so very proud of my son.  I am eternally grateful for him and the few short years that I had to bask in his light.  I am also grateful for the blessing of remarkably considerate individuals such as you, [your wife] and [your son] who have helped to ease our sorrow, if only by degrees.

Thank you for your messages.  Please express my gratitude to [your wife] and [your son] for their messages as well.  Most of all, thank you for being insightful or receptive enough to include the particular words that you chose in your email below.  I will never be able to properly express how much they meant to me.

With much appreciation,
-James

Break Every Chain

When James and I traveled to China to bring our Jacob home, we were away from our children here at home for three weeks. Jeffrey was only in first grade and three weeks away from mom and dad seemed like an eternity to him. It seemed like a really long time for all of us to be away from each other. To help our children with the anxiety of the time that we would be separated, they each made a paper chain. Each night of our absence, they tore a link off of their paper chain to help them count down the time until we would be together again. I remember that when we first hung their paper chains up, they seemed so long. Jeffrey commented on how long his chain was and that it seemed like it would take forever before he could take off the last chain link. The kids were faithful about removing a chain link each night and before we knew it, the three weeks were over and we were all reunited, only this time, our Jacob was with us.

The 15th of each month is always extremely painful. It marks another month from the last time I got to hold my breathing, soft and warm Cub. It is difficult to not replay the events of that last day of Jacob’s life over and over in my mind. The first three “month anniversaries” have been nearly intolerable. As I lay in bed last night, dreading the fact that today was the 15th, I decided that I couldn’t handle a lifetime of these sad anniversaries each month. I decided that I needed to change the way that I think about this day. I decided that rather than counting the number of months that it had been since Jacob took his last breath, I would count the anniversary as another month down until I got to see my living breathing warm baby Cub again. I decided that I needed a paper chain. I planned that each month, on the 15th, I will bring my Jacob a paper chain link that has been torn off, figuratively speaking, from the paper chain that counts the time until I am with him again.

I have learned first-hand that life is very fragile. In an instant, life can be unexpectedly ended. I don’t know how many links to put in my paper chain. Today’s link may be the last link that I ever place at his gravesite or I may live to place hundreds more. But, my hope is that by placing a chain link on my son’s grave each month, I will focus on the glorious promise of resurrection and eternal life. I will try and focus on the future promise of reunion rather than the pain and sorrow of separation.

Now before I finish my post for today, I want to share a tender mercy that I received from the Lord just minutes ago and I pray that I am not offending Him by sharing what I very much believe to be His gift to me. As I returned from the cemetery, where I brought Jacob the first link of my new tradition, I pulled into the garage and lifted my hand to turn off the car. As I did, the radio announcer introduced a “brand new song from Digital Age, Break Every Chain.” I of course didn’t turn off my ignition, but rather sat in my car with tears streaming down my face as I listened to a song that I know was given to me right at the very moment that I needed it. I believe in tender mercies and I believe with all my heart that the Lord sent me one today. (You can listen to the song at this link)https://www.youtube.com/watch?v=pxxYqSwJRuU