Additional Needs

The Greatest Loss

Posted by Micah Pederson on 7th May 2020 Additional Needs, Advice & Support, Disabilities

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Families of individuals who have a medical condition or other additional needs are no strangers to grief and loss. While the journey is undeniably bursting with boundless beauty, extravagant grace, and mountains of hope, there is also a process of mourning that often takes place.

Parents may find themselves grieving the loss of so many things they took for granted before entering into this unique parenthood experience: uneventful trips to the grocery store, friendships and support systems, holiday travels, family/childhood experiences they dreamt of, etc.

Besides the grief that comes with adjusting to an unexpected way of life, there is also much grief that accompanies families who watch a member live with chronic pain, physical struggle, communication struggles, constant medical emergencies, or other difficulties. On the most extreme end of the grief and loss spectrum are the families who are grieving the loss of a person who passed away due to complications associated with their diagnosis.

As a caregiver and mom to multiple children and young adults with additional needs, I will freely admit that large amounts and grief and loss come with this territory. However, I have recently found myself reflecting on the amount of loss I feel and how immensely it pales in comparison to the loss of those who are unaware of the loss they are experiencing--those who choose to remain distant from individuals with additional needs.

When my husband and I first became parents to children with additional needs we were shocked by the amount of people—our people—who reeled backward and ran in the other direction. We have watched time and time again as our children have been seen as less than or unworthy of being acknowledged, considered, or known.

For some reason, a large part of the population is tremendously uncomfortable with people who are different than themselves and rather than choosing to lean in, learn, and grow in their exposure and experience, they simply choose to turn a blind eye and carry on their much-too-comfortable way.

For several years, I have seen the absence of others as yet another loss our family has experienced.

In many ways, it is. I miss the friendships and support we had before parenthood. I grieve the amazing relationships my children could have had. However, the vastest void lies in the lives of those who choose to bow out. I truly ache for those who cannot find it in themselves to see my children as everything they are instead of a label. I feel so sorry for the people who would rather rest in their own comfort zone than experience the love, laughter, and valiant way of life my children unashamedly possess.

The greatest loss will never be the achievements my children do not obtain, the vacations left untraveled, or even the loss of a person taken from earth too soon. The greatest loss would be to have missed out on active participation in these gloriously lived lives in the first place.

No matter the heart-crushing challenges our family meets each and every day, never in a million years would I choose to be anywhere but here: smack dab in the middle of the magnificently wonderful, miraculous mess of it all.