An Open Letter From A Grandfather Of Special Needs Kids To Their Parents

As I write this letter I am primarily thinking of my own grandchildren who have “special needs,” and their family. I am, however, making it available to other people by including the letter as a blog post.

Dear Parents,

As a grandfather, I accept my “special needs” grandchildren may never live a “typical” life, whatever that is. I accept these children for who they are. They are unique and made in the image of God. He loves them and I can do no less.

I am so proud of your children when they reach a milestone they struggled for. They are young warriors not knowing the meaning of giving up. For instance, other people may not understand the thrill of knowing your child can now poop in the toilet. They don’t have to understand but I celebrate with you.

When I talk about my family I don’t make a big deal of it by saying something like, “I have six grandchildren and two of them are “special needs.” If part of a conversation I’m having with someone turns to bragging about grandkids kids, I brag along. I mean, why wouldn’t I? I love these children.

Before I go any farther I must make mention of an important part of your family. Other children, typical children who are part of a “special needs family,” may inadvertently be almost forgotten. If your family includes children who are “typical,” please monitor them and make sure they are doing well. Life can be lonely for such children. Give them some golden time just for them.

Believe me as a grandfather, I notice things. I can tell when a child is feeling left out. That’s where I can come into action. I can take the child out for lunch or to a movie or other fun things to do. The point is giving this child some time where he or she is spoiled for a while.

I have to admit I become somewhat angry when people exclude your children from things like birthday parties. Even if your child or children aren’t able to attend at least they can be invited. This includes family as well as friend type gatherings. There is no reason to not include children with special needs unless it is a health or safety issue. Even then an option may come up so they are not left out.

Many people make little effort to understand children with special needs. The lack of empathy they show is obvious. This is why people may seem to ignore you and your family. They don’t realize children with special needs are teachers of life. Being in their presence can expose us to our own weaknesses or strengths. These children present the “typical” population with a choice. The choice is to accept or reject them.

As parents I know your lives may differ from the lives of typical parents in a number of ways. I think of being diligent in keeping your calendar up to date. This is not for the purpose of scheduling barbecues with family or friends etc. Your calendar is used more for life and health purposes. This includes regular therapy or specialist and other related appointments. These are integral to monitoring your child’s day-to-day life.

Due to the health challenges your child or children live with there are experiences, situations, and events etc. beyond your control. Most times you can only dream of such things as getting away for the weekend or even planning vacations. This is the reality of your lives.

I see your world and now mine through the lens of a grandfather. Through this lens I see I have taken on a greater love for life. I see life is fragile and even enigmatic. As I look through my grandfather filter I see not all of life is black and white, right or wrong, good or bad. Life just is and it includes mystery!

There is mystery in the reality of special needs as it pertains to life. How is it one child or even two or three children in one family may have special needs? How does this happen? This is such a mystery. Perhaps the best thing to do, the most human thing I can do is accept these children. Accept them by seeing beyond their “special needs” and see them for who they are.

You see, in accepting children and other people with “special needs,” I may see my own needs. I may then see acceptance means love. As a grandfather I do not merely accept my grandchildren I love them. They are part of me.

I am getting older by the day. I look back over my life and I see there are more days behind me than in front of me. I know I may miss out on certain years of my grandchildren. I may be taken ill and no longer able to make a trip to see them. If this happens I trust they will always know how much I love them. This will never end.

All my love,

Papa.

https://scarredjoy.ca/

“Pregnancy and Infant Loss Remembrance Day”

I understand yesterday was “Pregnancy and Infant Loss Remembrance Day”. I didn’t know there was such a day. I think it makes sense however in a society like our’s where it is so easy to discard anything that doesn’t fit into the “norm”. The very thought of “infant loss” is sad. It doesn’t conjure up thoughts of joy or welcome little one, or future. Some may even think or believe that the babies we “lose” are not to be remembered, not to be given consideration. Not being born doesn’t mean “never existed”.
People, including family members, aren’t always understanding or even sympathetic. Perhaps because they have never experienced child death loss in any way, they cannot understand. To understand is cognitive, it is some we try to process through using our thoughts. People can however be sensitive or empathetic showing the “affective” part of us. It shows some sensitivity, some emotional feelings toward those who experience or suffer the “loss” of a child, whether born or unborn.
I wonder how many parents or grandparents, or other family members, took time to honour the memory of these precious children? I wonder if they know other people do care. Perhaps that is a mere assumption. Perhaps others don’t care.
As a grandparent, I think of those I looked forward to saying “Hi” to and welcoming into our family. The “hi” was instead a “goodbye”! The anticipated joy turned quickly to a sadness that lingers. The grandparents I communicate with understand what I mean.
I’m working through this type of “loss” and may continue at another time. I’m not sure however if people will even show interest in this post. That will be an answer in itself.

Perhaps the death of a child is one of life’s most sad and terrifying experiences to endure. Some people with this “loss” on a daily basis. If you are one of these people feel free to share your story here. Say whatever you want.

Take care for now!

Grieving Grandparents

Hello Folks! I belong to a Facebook page called Grieving Grandparents. I have been part of this group for about a year. I enjoy the interaction we have as grandparents acquainted with the “loss” of our grandchildren. Many times the posts written by our group exhibit the rawness of our grief, of our pain, our sadness. Group members use such terms as “born sleeping.”  This refers to those babies born without taking a breath. We will speak of babies who were not born yet they are loved. Some grandparents endured the agony of loving their grandchildren for a brief time and had to bid farewell to them because of a life-ending illness or a horrible accident and even acts of violence against those little precious people. We do not try to “fix” each other. We are “there” for each other as much as we can through cyberspace.

Our “scarred joy” is an experience we live with. We remember our “loss” but also we sense a “joy” in life. We can endure. We carry on in our journey through life aware of our woundedness yet joyful knowing we are not alone.

I hope that in your journey you are not alone. I hope you know people who will not back away from you because you “are not over” your “loss”. I hope to that you know that by visiting “Scarred Joy” you may vent as much as you want. Sometimes it helps us to name our pain, to say what it is that is adding to our not always walking around with a big smile on our faces. If nowhere else, this is a place you can be real with your feelings and thoughts.