Everyone wants to be considered unique. One of a kind. Afterall, isn’t that the wonderful thing about Tiger, “that he’s the only one!” Stand out! Be noticed! That’s how to make your mark. In school, career, and, I guess, life in general. The great desire to be one of a kind. Gives us an edge. You know, we all want the peverbial mold of us to be broken.
The irony being as a child generally we just want to fit in. We don’t want to be noticed for anything unique. And heaven forbid, don’t call us different, that could lead to a complex that could lead to permanent scarring. Cliques, crowds, teams, clubs, all packed with members, all being watched by those on the outside just yearning to be one of them. Perhaps many of us still feel this way, like the child looking to belong.
I was previewing a book, for my niece, by Kelly Cutrone entitled, “If you have to Cry, Go Outside.” Kelly Cutrone is a mogel in the PR fashion world. As a success she is always being asked, “how she made it?” “what is the secret to her success?” This book was to answer some of those questions. To help my niece get her start in life. I liked her basic message, which seemed to be, work hard and don’t be a big ol’ crybaby! No secret, just work. Perfect for twenty somethings starting out or anyone…really.
Another point she made to the up and comers was to find “your tribe.” Your tribe that is like minded, that you can travel with for nurturing, guidance, socializing and basically cultivating a “little family” that will be your soft spot to land when you fall on your butt one too many times. Thus, lacking the ability to use your own untapped, super human strength to pick yourself up by boot or bra straps. Makes perfect sense to me.
Sounds like the basic theory that revolutionalized the support group. A place to share with like minded people, with similar life experience, generally trying to accomplish a common goal or endure a common circumstance. People who will “get” you, understand how your mind may be working and what exactly brought you to that mindset. A tribe, if you will.
With a tribe, you can preserve all straps and elastic. They don’t get as much wear and tear, afterall, if you only need to pull with one hand while leaning on a shoulder (or shoulders) with the other. The ultimate in strength…balance.
Even in the world of loss and grief, there are groups. Widows, widowers, parents who have buried a child and children who have buried a parent. Break that further into causes of death and ages and many different groups develop. Thus, giving most of us a place to land…a tribe.
In my case it is the group that have buried a child. But in that group I still cannot find my tribe, my sub-group to Pow-wow with. I have come into contact (and developed relationships) with others who have buried a child. Still we are not alike. I don’t quite fit in the Infant Loss community. Madeline was 16 months when she died. Considered more a toddler to many, I suppose. She grew in my womb, drew breath, and though too short, she had life, which can be contrary to the many heartbreaking stories in the infant loss community.
The other community that nurtures it’s members through loss and heartbreak or those who have lost a child due to a battle with an incurable disease, such as pediatric cancer. These parents know what it is like to receive this horrific diagnosis, watch their child fight the disease with herculean strength, yet it was out of their hands and their life now has an irreprebable hole where their child used to live. Sadly, there are many, many people in this group.
Again, like me, despite super-human levels of fight and determination, they still lost their child… their baby.
Yes, I to, have buried my Baby. As I said, Madeline was 16 months old. Her diagnosis, Down Syndrome. While I was pregnant, I had a fetal echo-cardiogram, in which they determined that she also had a congenital heart defect known as a “complete AV Canal” and a fused valve. All very common in Children with Down Syndrome and all “highly treatable”. Although I understand there are no promises, we were told there was over a 98% success rate with babies who had this procedure.
Soon after birth a blockage was found in her stomach. A month later, a feeding tube. A month after that, open heart surgery. Then just when we thought we were in the clear, an emergency trach. Only to be followed up a month later with another stomach surgery. All things that knocked us pretty hard to the ground but just like those inflattable punching bags, we bounced right back up. If nothing else, we were determined. These were all just setbacks, hurdles to jump to get Our Sweet Girl to continue to grow strong and healthy.
After all, who ever heard of anyone dying as the result of Down Syndrome? Not me. So, I guess, I did not allow the thought to cross my mind. When I had lost all patience and understanding for her surgeries and hospital stays I clung to faith and hope. Just praying to get through this one more hurdle and the hope that it was the last one.
But pray, love and hope as we might, it just was not enough and Madeline was gone. I recall in my state of shock having the thought, “this did not happen”, this COULD NOT have happened. A Baby doesn’t die from Down Syndrome. WHO ever heard of this? So, WHY? Why? Why, did it happen to me? Why anybody, why Sweet Madeline?
And…am I the ONLY ONE?
I feel like Tiger and I don’t want to be Tiger. This is my problem…I HAVE NO TRIBE! I have found NO ONE one who is exactly like me, having the exact life experience. I really don’t want to be the only one. Being Tiger is actually making me feel more like Eeyore…sad…alone.
I am the only one, that I know of, who has lost their Beautiful Baby as the result of medical complications due to Down Syndrome. Not that I want anyone else to be in my tribe. It is painful and sad to be without your Baby. However, I keep thinking it would be somewhat comforting to be a shoulder for someone else who has buried their own “Madeline.” To have said yes to life and taken in all the love, wonder and beauty…and are now left with — good-bye. But you weren’t ready to say good-bye because you were caught up in all the joy that this gift..this child…brought you and your family. And you waited with anticipation for all that was to come.
Two years later this tapes still plays in my head. Where are my people…my tribe. The people that have had an almost exact life experience that can listen and truly know just how I feel. How it feels to learn that your baby has or will have Down Syndrome. That experience alone. Then to hold this child in your arms for the first time and fall completely head over heels. To want nothing more than to take them home and let them be a sibling to their adoring brothers. Instead your family exists on a hospital/ICU schedule. To live this experience and to ultimately watch your child die before your eyes as you stand helplessly by. WHERE IS MY TRIBE?
The people that know that all life has purpose and know that down syndrome did not lessen the value of your child’s life nor the pain of their death. The same people that possibly stare at any child they see with Down Syndrome and either want to cry their eyes out or continue to stare, eyes green with envy.
And just maybe they understand what it is to want to run up to someone they see with the tell tale features, are completely taken in by their beauty and want to tell them all about their “Madeline.” But you can’t, because you just can’t ask all about their child and then say, “My child has Down Syndrome to, but now she is dead.”
I do have wonderful, caring friends, who have lessened the wear on my boot straps and scooped me off the ground. But lately, I feel that I don’t have my place. It is lonely. I want to belong, be like someone else, so we can catch each other as we fall. We can get each other and lessen the wear on our boot straps.
Perhaps it would be a little less lonely to be Winnie-the-Pooh. Afterall, he has Christopher Robin. Troubles seem to feel lighter when you have a Christopher Robin. I need Christopher Robin.
Perhaps I am not Tiger after all. Perhaps I am Pooh..and I’m not the only one. Or, perhaps I am Christopher Robin and Pooh is out there waiting for me. Perhaps I need to look further into the Forest.