Skip to main content

Sometimes you just have to snuggle

I will admit, I look forward to Ethan's nap time. It isn't that I don't love my son or love being with him, because I do, but I think I can speak for most parents that most of the times babies and toddlers (and even big kids) just need a nap.

Ethan's nap time is typically the time in which I can get things done --- dishes, laundry, take a shower, do work for GFPD, and I admit that sometimes I just sit on the couch and relax for a bit. Today was a day that I had things planned for nap time. I've been working on a project for GFPD that needed to be completed, but Ethan didn't want to sleep today.

I let him cry for a few minutes before I went to rescue him when it became obvious that napping was not on his agenda. So, we curled up on the couch with a blanket and a silly Hallmark or Lifetime Christmas movie (don't remember which) and snuggled. Ethan isn't a snuggler, typically, so I just enjoyed the moment. I sang to him -- it was probably a good thing he had his hearing aids out -- and I told him how much I love him. We rocked a little, and I prayed for the millionth time for the Lord to heal my baby.

As Ethan fell asleep in my arms, I decided not to put him down. I knew I was right where I needed to be. Somehow I was able to successfully maneuver into a somewhat comfortable position while keeping Ethan asleep and there we were, for over an hour. My precious toddler, who is still truly a baby both inside and out, resting on my chest. Today nothing got done during nap time and that is okay. I know the reality of this disease, and that someday it will not be more time to get things done that my heart and soul will ache for.

I am going to steal this quote from the St. Jude's Children's Research Hospitals commercials - "Give thanks for the healthy kids in your life, and give to those who are not." So today, and everyday, please hold your kids (the healthy and the not so healthy ones) a little tighter and make sure you tell them how much you love them and thank the Lord for the time that you have with them.

And if you happen to have the ability to give a little extra to help make a difference for kids in need this Christmas season please consider doing so. There are many wonderful organizations that you can partner with to provide Christmas gifts for children whose parents' aren't able to this year and of course there are organizations such as St. Jude's Children's Research Hospitals, the Global Foundation for Peroxisomal Disorders (GFPD) and so many others that are trying find treatments and cures for children facing life threatening illnesses.


  1. I am so glad you got snuggle time...What a beautiful post. ((((hugs))))


Post a Comment

Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.