Special Needs Parenting: Holiday Heartache
Such a wonderful time of year that brings many so much joy. I love Christmas, but it can also be a time of sad reminders for parents like me.
As much joy a s the season brings it also can bring parents glimpses into a life that we may have longed for.
A life that we may have planned out for our child.
It is another reminder to us about how different our lives are, reminding us of all of the “typical” things we occasionally miss out on.
Our 4 year old was born with a metabolic condition that affects nearly every part of his body. Not only is he medically complex but he’s also nonverbal and severely developmentally delayed. He is also extremely sweet and has a face that’s hard not to love.
And like birthdays, Christmas is a time of year that can occasionally be a difficult time.
I have cried in the children’s toy section, more than once. I have shed tears looking at toys geared towards children years younger than my son knowing he still doesn’t have either the skills or cognition to play with them. I have texted a girlfriend who “gets it” while trying to come up with a Christmas wish list for our son that doesn’t have vitamins, skin cream, or therapy equipment.
I needed to talk to someone who truly understands just how sad I was feeling at that moment.
I have turned down invitations to gatherings we truly would love to be at. We have tried attending events only to leave within minutes, realizing our son couldn’t handle the environment or the space was not wheelchair accessible.
There are so many wonderful holiday experiences that children like mine either can’t or won’t participate in. Holiday parties can be loud and overwhelming, and where there’s a lot of people there could also be winter colds or flu bugs hanging around.
These germs have the potential to send our son to the hospital, and that’s a risk we aren’t willing to take. Outdoor events aren’t safe for our son’s health with his inability to regulate his temperature, and wheelchairs aren’t
exactly easy to push in snow.
I know gift giving can be so hard for family as they try to find an appropriate gift.
As much joy as this season brings it can also make parents like me retreat into the safety of our homes. So please be patient with us. We may turn down your invitations but know that we truly would love to celebrate the season with you and appreciate your invitation more than we may express. We might have a day or two where we aren’t in the mood to spread holiday cheer; please understand we may be hurting.
We may go silent when you talk about your festivegatherings, gift buying, or snowman making with your children.
Please know we are overjoyed for you and your enjoyment but somewhere inside of us we may be wishing for the same experiences.
I love the holidays but there are days when it can bring some unwanted feelings that isn’t just joy.