Surviving the firsts, (and seconds, thirds, fourths and.....) after the loss of a child with Zellweger Spectrum Disorder

It was Christmas time. I was opening a box of decorations and as I looked in the box there it was, wrapped in paper among all the others. I pulled the paper away and paused when I saw the words “Baby’s 1st Christmas”. My heart sank and the tears fell as my mind reflected on the reality that it was baby’s only Christmas. How were we going to get through the holidays?




It’s been 4 years since our sweet son passed away. He was born with a rare disease called Zellweger Syndrome.  Our only Christmas with him was spent in the children’s hospital still waiting for a diagnosis.




For many people getting through the firsts can be extremely hard; the first birthday, the first Christmas, the first anniversary of a death to name a few.  It is the first year where you are adjusting to life without your loved one, and it is not easy.


Our loved ones changed our lives forever and even though they passed away we are still a dad, mom, sister, brother, grandparent…family. What helped us through those firsts was allowing ourselves to grieve and having others show us we were not alone.


We all grieve differently, and that is okay. The first year is a time when our triggers become known to us and how we process a death is played out. Especially when we are all at different stages of grief, and how we handle those stages vary from person to person in both breadth and longevity.  Below is a list of suggestions to aid you along the path of healing:

  • Give a donation to a charity in memory of your loved one;


  • Volunteer with a shelter, soup kitchen, toy drive or another charity where you can do hands on work;


  • If a holiday is hard for you it is okay to take a step back.  You do not have to decorate your house, go to every party, or attend every concert. It is okay to decline an invitation;


  • Talk with people you trust and who show they care about you.  They love you and want to listen;


  • If you have children you may still need to decorate for a holiday or go to events. For children the consistency of traditions can be comforting, but items which help them remember their sibling may give them an outlet where they may not communicate verbally about just yet.  But still, you may do a little less than years past and that it okay too;


  • Allow yourself to feel what you are feeling and don’t force yourself to grieve or cope the way others think you should or the internet prescribes.  If you are really sad, overwhelmed, or confused, talk to a counselor or another trusted person who can walk with you through your emotions and feelings;