The Missing Milestones

As May passed and June began, I saw a lot of beautiful pictures on social media of graduations, weddings, engagements, and first jobs.  All magnificent milestones worthy to be shared with friends and worthy to get a like or congratulatory note posted to the page of the proud parents.  As I scrolled and liked, and congratulated, something strange happened.  I began to grieve.  Sadness settled in and I almost wondered what was happening.  Initially just a little sadness, but when I realized many of the college graduates were fellow 2017 classmates of my son’s, the realization of what I was feeling began to unfold.  Was it possible for them to be graduating from college?  I counted on my fingers the years. One, two, three, four, yes it has been four years since our hearts beamed with pride while simultaneously wrapped in fear as we wondered if Mason would make it through the excitement of graduation without a seizure.  I gave him some extra preventative medicines and even today I grieve that because of the meds, he may not remember a lot about the graduation, but at least he made it through the night.

Grief is a tangible, gut wrenching, emotion.  It can wrap its arms around you like an anaconda and squeeze.  The more you struggle to leave its grip, it can and will squeeze harder until you are standing in the aisle at a grocery store, looking at a young person stocking shelves and begin to cry randomly, and think: “Where is this coming from? Why now?”

When Mason first began experiencing seizures, he was ten.  As each year passed, we could try and “hide” how he was not able to do all the normal things others in his age could do, but as he grew, the seizures worsened, and the restrictions and safety concerns grew.  The gap between how he was able to live and how his peers were living was growing wider and becoming too hard to cover up.  Our reality was becoming too hard to hide, even from ourselves.

 In comes the unexpected grief.  The last four years have been a slow swelling of things that have dramatically increased with time and the tidal wave of grief has began to wash over us in ways we had not imagined.

With all that said, please know that I was hesitant to write this, first because I would never want someone to interpret my grief as being unhappy for their happy situation.  Secondly, I do not ever want people to shy away from telling me their good news.  Finally, I do not want to seem like I am living in self-pity, nor do I want pity, but I do want the world to understand. The reason I decided to write this is to cultivate understanding of the actual, living grief that parents and loved one’s experience when they are shaken out of their caregiver zone and faced with the realities of what milestones they are missing.  I also wanted to offer some small things that others who are experiencing those “normal” milestones can do to help those who are stuck and are grieving their loses.

Grieving what is lost is a normal part of life.  After going through cancer and grieving things like the loss of hair, the loss of health, ultimately the loss of friends, I thought I had a good understanding of what grief looks like and how I need to work through it, yet again, life is a great teacher, and I am brought back to the proverbial classroom.  This time I feel like it is not grief 101, but a new kind of grief, the AP course.  The grief that ebbs and flows with the seasons of life. A grief that comes out of no where and shows you things you had no idea you would even think about missing, until you are staring it in the face. This grief is ongoing.  This grief is harder than what I imagined.  To be honest, I had not really imagined it as much as I should have.

Around the same time, I began to grieve in May, a friend who has a daughter with severe health problems began posting about her planning a sweet 16 party for her daughter.  She commented how this party would look very different than most sweet 16 parties.  My heart ached again.  Not just for her but for all the parents who are caregivers who are grieving how the normal things are missing.

Here a just a few things that make me and many others who have sick children grieve:

A run to the store to pick up a gallon of milk.  I am terrified if Mason leaves my sight because he can have a small or large seizure at any given time.  He could fall or become lost in moments.  I am talking about just walking down an aisle, we have not even talked about driving.

So here we go: Driving.  I would love for him to be able to safely drive anything: a bike, a four-wheeler, a golf cart! Finishing college, Mason has been able to complete a lot of classes, but with tutoring and after this past year, the seizure damage has made classwork difficult, so college is on hold.  Going on dates, hanging with friends, staying home alone, getting married, buying a home, having a job, handling their own household duties, walking from one side of the store to the other, going in a restroom without panic setting in that something has gone wrong, taking trips, not feeling like a child, doctor appointments, medication side effects(long term and short term), memories, having to avoid busy or overstimulating environments, maintaining friendships with people you grew up with who now seem like they are living on another planet and have left you in their shadows.

This list is not conclusive, but these are just a few notable missing milestones and if you have read until this point, here are some ways you can help:

One, do not forget about your sick friends.  If you are healthy and enjoying life, please try to remember to contact and include your friends who cannot be as active as you.  Try to visit them or see if you can take them to lunch.  Just sit with them while their caretakers have some time alone to run errands or go on a night out.  Remember what you see on the surface is just a small fragment of the things they are probably living with daily but choose not to discuss.

Parents, please teach your children to love those who may be different than they are. Love is not just a word but an action.  Be the friend of the friendless, spend time with the people who are trapped in their own bodies. Also, parents, please do not bemoan your children’s abilities to leave the nest!  I would LOVE it if my child were able to leave and have his own home.  Celebrate the milestones, please do not cry to others about your child leaving home. It is a wonderful mark of health and successful parenting.

Finally, please continue to include us in your celebrations of life.  In moment’s notice any person who is healthy can become sick or handicap.  A diagnosis or an accident can drastically change the life of a person.  We know this, we want to celebrate all the things so do not shy away from telling us your good news.  Life is a gift and moments are to be cherished.

Each of us has a story to live out and each of us has purpose.  My story is not yours and I do not expect it to be, and I know God has called us all to different journeys.  We need to learn from each other’s journeys.  We need to grieve with those who grieve and rejoice with those who rejoice.  We cannot leave either grief or joy out of the equation.  Life is a balance of both.  When we embrace this concept, we will all be better people, better Christians, better neighbors.  So, for those who are grieving missing milestones, it is ok to not be okay right now.  It is ok to be frustrated and sad with the missing milestones, but we must know there is grand purpose in what we are living.  For those who are rejoicing, continue to rejoice and thank God for all the good and perfect gifts that you currently enjoy.  

Most of all, pray for your friends who are living with daily challenges.  Give them grace to share without trying to give advice, give them random hugs because we all need to know we are loved, and ask if there is anything you can do to lighten their load.  More than likely, they will say nothing, but you just asking, will take a small weight off their shoulders and give them a heart smile. They will feel loved and most of all they will feel seen.

-Melissa Pyle

"Bear one another's burdens, and thereby fulfull the law of Christ." Galatians 6:2