When I was in college I took a class where we studied the life cycle. Rather than assign a textbook, my professor recommended we read a number of books that could be found on the shelves of Barnes & Noble. One of the books was titled Necessary Losses and addressed the issue of how we grow and change through the losses that are an inevitable and necessary part of life.
In her book, Judith Viorst persuades her readers that through the loss of our mothers’ protection, the loss of the impossible expectations we bring to relationships, the loss of our younger selves, and the loss of our loved ones through separation and death we gain a deeper perspective, true maturity and fuller wisdom about life. Although I read this book for the first time more years ago than I care to admit, it remains in my collection and has moved with me as I have changed addresses four times. I often think about the book, reflect upon the losses I have faced, and try to figure out the lesson I am supposed to be learning from those losses. Am I really full of more wisdom about life, or is this what I am supposed to believe to feel better?
In addition to the losses that come readily to mind, I have become acutely aware of the losses that come with having a special-needs child. In the beginning, it doesn’t seem so bad – a different class, an inability to catch a ball the way the other kids can, not being able to eat the same foods. Then it gets a bit harder, when all of the kids around you are enjoying the carefree days of summer while your child is required to attend an extended school year or face too much regression when September rolls around. As our children turn into pre-adolescents and then teenagers, they lose out on the normal progression that kids go through. As my daughter is glued to my side, I witness her peers wandering around town in small groups or eating at the local pizzeria with friends – without supervision. My automatic response is that they are too young, but then think back to when I was their age and realize I was doing the same thing. My best friend Joanie and I would ride our bikes three miles into the center of town to spend the day checking out the new releases in the record store (vinyl of course), smelling Love’s Baby Soft at the pharmacy and going to the pizza place to grab a bite to eat in hopes of running into the boys we knew who would have their quarters piled up to play asteroids or space invaders. If they were not at the pizza place, we were sure to find them at the local Dairy Queen playing video games there. Harmless fun that all newly turned teenagers should be able to enjoy.
Freedom.
Independence.
Autonomy.
The difference is my daughter cannot do these things. My guess is that your child cannot either. She requires more supervision than kids her age and hence, does not get the opportunity to participate in these rites of passage. With this comes the loss of friends. I mean, let’s face it, who wants to hang out with the kid who always needs a babysitter? A show of hands? Anyone? I didn’t think so. Another loss. The question that haunts me is this: Is it necessary? What is to be gained by her experiencing this and so many other losses? What great wisdom is to be had by her sitting slumped next to me at the movies when a posse of kids from her school ends up in the same theater snickering at her for being with her mom? Maturity? Perspective? Hardly. Heartbreak is more like it.
Her losses turn to mine. As kids gain freedom, so do parents. I listen with envy as I hear parents complain that they never see their kids due to their social lives. Time to themselves . . . without kids . . . to grab a nice dinner, run errands in peace, or to simply “be.” I have stood at the town carnival watching cars pull through the parking lot dropping off a loads of kids who barely turn and wave as they exit the car. I cannot just drop and run. I have to stay there to watch over the crowds and ensure my daughter does not do anything to further isolate herself socially. Fortunately, I have friends with much younger children, so instead of being the creepy adult hanging out at a kid function by herself, I get to tag along with them and “act” normal.
As my daughter is not able to experience the necessary losses that Judith Viorst writes about, we experience together a whole new set of losses that are not shared by everyone. Unlike a normal loss that allows one to go through a grieving process, this is neverending. How can you grieve and put away a loss that sits in front of you each day as you attempt to heal from it? I ask this with a fair amount of experience in the grieving process. I have suffered and survived great losses. Even though I cannot say I understand why all have been necessary, I do hope that I will someday. I believe I will someday. This makes me wonder why? Why, if I am able to accept even the most tragic of deaths, is it so hard to accept the losses my daughter faces every day?
When I ask my Saint-in-training what she wants most in life, she says she wants to be “normal.” How do you accept the fact that , although normal is a very ambiguous term, in the mainstream way of thinking she will never be normal. Most kids get a last minute-invite to a sleepover and their biggest concern is whether or not the host has a spare toothbrush for them to use. Well, at least the parents worry about that. Not my kid . . . or yours. Toothbrush? Check. List of restricted foods? Check. Vitamins and supplements separated into individual baggies with dosing times/instructions? Check. Nebulizer? Check. Compression vest? Check.
“Oh wait! In the rare event you are actually invited, you can’t sleep at anyone else’s house, because we chelate every three hours around the clock on weekends. Oops. Sorry honey.”
She might just be onto something when she wishes for normalcy. This would allow her to experience and enjoy all the daily events that most take for granted. I could watch with pride, instead of worry and panic. Most days I have accepted that this is the path we were meant to take. I just have to wonder, was it really necessary?
Another day, another loss.
We are all deeply affected by the losses our children — the absolute loves of our lives — face. The necessary ones and the unnecessary ones. We grieve those losses. The good news is that we are not alone, and we can mourn them together. We can put them into a special place where we can peek at them from time to time. The key is to not dwell on them for too long, but to focus on what we have versus what we do not have. Fabulous support system? Check Unconditional love from our family? Check. An army of Thinking Moms (and dad) at our disposal literally around the clock? Check. An amazing mother-daughter bond? Check, check!
Now that I think about it, our losses may not be necessary, but it could be worse. A lot worse.
~ Saint
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Beautifully written and exactly describes what I’m going through now. I’m going to forward to my husband, only-half jokingly nicknamed “The Ostrich” by me. I don’t think he fully understands why I’m often depressed now that I’m our son’s full time caregiver.
Totally nailed it as far as I’m concerned. I have six kids. Number 5 has significant special needs. Things have become much more isolating for both of us as the years have gone by. Now at age 19 we both feel these losses so acutely on a daily basis.
I’m sure your words ring true for many of us. When my son was diagnosed with autism in 1997, the Children’s Hospital psychologist told all of us parents in a group session that those difficult feelings would return every time our child missed another milestone — high school graduation, getting a driver’s license, going away to college, etc. And it’s been true. But then, sometimes our kids are just late bloomers and things do happen for them in time. My son, now 19 years old, had his first sleep over with a friend this past year. Through the past five years of home schooling, he will be graduating with a high school diploma this June (at age 20). He is now preparing for his Learner’s Permit test and just in the past few months he has started going to the movies, the mall and bowling with friends — without any aide or shadow along. Sure, these may be things a typical kid is doing on their own by age 12, but our kids get there when they get there. I’m thrilled by his every new accomplishment and so proud — all the more because of all the effort on his part (and ours) to reach each milestone.
This is beautiful and timely too. Years ago our problem was would he be able to go to school and how would he cope? Yes he’s at school but now I’m doing it all again looking at high schools for next year and watching the party invites dry up as the kids don’t want to invite him any more like they did when they were younger and their mums included him to be polite. We have so many good days and he’s doing so much that we never dreamed he would do. But then you get a slap in the face watching a group of his friends together and he’s with me. He’s happy with me mind you, thank goodness that it hasn’t made him sad yet, just me.
And yes it could be worse, but a very wise lady once told me that just puts a lid on our grief. She said my grief was valid and needed to be expressed, as I had told her the same thing “oh well, it could be worse”. And she said “your broken arm doesn’t make my fractured leg feel any better”. So your grief is your grief and your loss is not to be underestimated by comparing it to others worse off. It’s valid and thank goodness for other mums like you (and wine!) that help us through.
And yes it could be worse, but a very wise lady once told me that just puts a lid on our grief. She said my grief was valid and needed to be expressed, as I had told her the same thing “oh well, it could be worse”.
And she said “your broken arm doesn’t make my fractured leg feel any better”. So your grief is your grief and your loss is not to be underestimated by comparing it to others worse off. It’s valid…
If we give in to complacency to fit in better with those who deny most everything we say about most everything that is our 100% truth, than we will also give in to:
“just accept it and live your lives already as best you can because nobody knows how all this happened and there is nothing that can be done.”
And this would lead to “giving up”, losing all hope which is the same as dying a little bit each day emotionally.
NEVER SAY THIS, EVER!
NOT TRUE!
We don’t know what will happen in the future if we do not recover our families…it could be worse!!!
Own your emotions for they are what keep us going to reveal the truth and to get the true and appropriate diagnosis and treatment for our families, to avoid further injuries.
The others as in “Us and Them” keep trying to force us all into putting a lid on our emotions and their own very real FEAR that our pain and suffering was indeed preventable for the most part, and what that mean to the masses….
It means that we are all exposed and vulnerable to the incredible evil deeds of those with the power to force the sheople to do whatever they deem is “a good”
http://www.youtube.com/watch?v=s_Yayz5o-l0
Us and Them by Pink Floyd
This is totally spot on!
Barbara in Chicago
This article hit so close to home – I pray for all our kids that they can find a bond with someone who will love and appreciate them just as they are. This poem was written about my daughter in the school playground.
Alone
She’s standing in the playground, way out her comfort zone
She’s there with all the children but she’s standing on her own
She’s on the outside, looking in, at all she wants to be
Wondering how to break through glass that no one else can see
She’s looking for a playmate, can’t make her feelings known
And while the words escape her, she’s standing on her own
She’s walking round in circles, not knowing what to do
She’s hoping for a Rescuer that she could then cling to
She’s dreaming of that perfect day when all the fear has gone
And while she’s busy dreaming, she’s standing on her own
Wow… Beautiful poem. Gripped my heart and brought a tear to my eye.
What an inspirational poem… I too have a Son with a disability and could relate to every word… Beautiful
I really appreciated this piece. My head has been filled with similar thoughts, in the past year.
My daughter, who is a young teen, is in what I think of as partial recovery limbo. She is recovered enough to participate in typical activities, such as orchestra, but not enough to fit in socially. She actually had a few friends earlier in life, who now ignore her. The conversational demands have increased to the point that she just can’t keep up. The combination of shyness, and limited conversational abilities seem like a wall she just can’t climb over. The pain of this really threw her into an emotional tailspin earlier this year which we are still trying to recover from.
Because of their experiences with health and development issues, I think our kids also lack a level of sophistication in their interactions with others. They still need protection and monitoring at older ages.
Someone pointed out how other typical kids may have hidden disabilities. I couldn’t agree more. I have seen serious emotional problems in some of these kids. These problems are sometimes overlooked. The only kid who paid any attention to my daughter, recently, had many such issues. She attempted to persuade her that they shared much in common, and was had a serious negative effect on my daughter’s thinking. I was forced to dissuade my daughter from further interaction, which was extremely painful and difficult.
I often wish our kids had a way to support each other. Even a long distance support is so much better than feeling alone. I believe we know that very well.
I can relate so much to this. It’s heartbreaking to not only see your child miss out on so many things, but also to miss important events in your own life. My only consolation is that I think my son is unaware of what he is missing (the only good thing about being low functioning). I try hard not to dwell on how our lives could have been or should have been. And I’m thankful for moms like you who understand what I’m going through. It’s not something that typical parents can fully understand. This is a wonderful support network that didn’t exist 13 years ago when my son was diagnosed. I felt COMPLETELY alone and isolated then!! So thank you from the bottom of my heart for all you do to help other parents!!
Oh, this post brought tears to my eyes. I am so sorry for your losses. Reminds me of many of my own. My daughter’s middle school had an 8th grade dance a week before their graduation. My daughter insisted on going. We bought a beautiful dress. I kept asking her who else was going, when they were going, etc. She didn’t know. Well, that night we got her ready and I drove to the school. Everyone was happily posing for pictures with each other. We sat in the car not knowing what to do. My daughter got so anxious she was yelling a me and I was crying, at a loss. A crossing guard whose daughter attended the school spotted me and told my daughter to get out of the car. I had to quickly wipe away the tears and get out. My daughter walked in with the crossing guard’s daughter and friends. It was nerve-wracking. The following week, a good friend of mine from high school had her daughter’s pre-senior prom party at her house. She invited me to come and see her daughter’s dress. Oh yes, her daughter was the home-coming queen that year. I can’t tell you how hard it was to stand there and watch the festivities, having experienced the struggle my daughter had with the 8th grade dance. It is so very hard. And yet, there is that mother-daughter bond to be thankful for. I’m sure everyone here can relate to this wonderful post. There’ comfort in knowing we’re not alone.
You articulated things that I have been thinking, both consciously and unconsciously, so beautifully. Thank you. I too grieve his milestones missed but as you concluded, when we look beyond our grief we see so much to celebrate. I had a friend remind me several years ago that he is perfectly made. That reminder stuck with me.
One other blessing is watching his three younger siblings develop a special bond and empathy with him. They are protective, compassionate, and understanding beyond their years. My nine year old can work with him more effectively than I sometimes. I marvel at them. I have seen this translate when we are at Special Olympic events, or camps, or in the grocery store and they interact with other sweet, special persons.
My son, their brother has given us all so many unseen gifts. We have to remember to focus on those, not the mourning.
Thank you for these sweet, honest words.
“could be worse”
BUT
“it could be better”!
Nobody deserves to endure the worst of what man’s evil has done, nobody.
I will soldier on until my last breath to heal and recover my children, our family.
God did not intend anyone to live in eternal Hell on Earth, nobody.
Oh how I can relate. Just the other day a couple of girls that attended my son’s old school walked by as he wa getting on ‘the little yellow bus’ off to his ‘special school” and contained class. They ride their bikes in the summer as I struggle for about the 6th summer in a ow to teach my son to ride his bike. : ( Everyday is a reminder of how he will struggle and miss out on life. I try not to dwell though and keep moving forward. But sometimes I allow myself to cry for him and me. Loved th article but it wa painful to read .
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Great post, Saint! May your Saint-in-Training’s gains bring her all she hopes for and more!
What a wonderful article and so true, I can relate to every word. I would love for my daughter to find one friend, just one that she could hang out with occasionally. Too bad we’re not neighbours! (I’m in Europe)…
I absolutely agree Sheryl. I work with children for a living and know that so many have hidden disabilities, whether they be medical, emotional or physical. Thank you for your kind words and support.
~Saint
You are doing a great job, and the work is clearly very hard. But worth it. I am sorry for your losses, and all of our losses. One thing to keep in mind, so many of those children who seem “normal” may just have issues you can’t see.
I can’t say it get’s easier, but you will get used to it. I always tell people…They will cover my grave with all of the missed milestones. I take consolation in the fact that our boy has no idea what he is missing. It’s my pain, not his.
…and your pain is as real as it comes. I am deeply sorry for all of your losses…the past ones, and th eones you are still facing.
~Saint
This is the new level of concern I have for my child. As he is getting older, kids are doing more on their own, and I’m scared to death to let go. He understands so much less than his peers. At this point, he doesn’t seem to be upset by any of it, he is blissfully unaware. I just wonder if it will stay that way as milestones start to possible pass him by…like driving or dating or going places alone. Time will tell. Thank you for this, Saint, I can’t wait for my husband to read it.
My dear, sweet Blaze. I am sorry to bring new concerns to your already long list of concerns. You know that I will be here every step of the way, holding your (cyber) hand and supporting you, just as you have done for me.
Love you <3
You went a long way. It is not over yet. They learn slow, but looking back at a 3 yo who was mute, spinning in circles and biting his wrist, I am so happy that now at 17 he is at a regular school and has one close friend and a couple of buddies. I am sure you too have things to be proud of, and things you hadn’t hope for until they happened. i guess we just have to keep going. God bless.
Thank you Elena. Yes – I do have wonderful things that I am extremely proud of. I am thrilled to hear how far your son has come. That must be extremely rewarding for you.
~Saint
Mourning together…..yes.
Thanks. Always so nice to hear someone else feel what I do. It’ s comforting.
Happy,
We are never alone inour thougts, even when we think we are. I hope you find much comfort with the Thinking Moms (and Dad).
~Saint
Fantastic xo
xoxoxxo
Check CHECK on that bond, Saint! My daughter tells me I’m her BFF. And we are. But I pray she an age appropriate BFF when those Saturday afternoon movies roll around in middle school.
Jerry,
I too hope that your sweet girl has an appropriate BFF during the years ahead. However, if not, I am sure that she will survive with your friendship, love, support and strength. We WILL survive this my friend. xo
~Saint
Wow. Did this hit the nail on the head. Thank you very much for sharing, Saint.
It is exactly where I am with my son. He is doing well enough to be wanting (perhaps craving) the rites of passage his peers enjoy but he must hang out with mom and occasionally his dad. Oh and sometimes I am able to get a local older teen to hang out with him and he does enjoy this. Why? Because it’s far closer to normal than always being with mom. He watches sadly as his sister (19 mos older) has her many friends over, goes to the movies and just enjoys all that he craves. It is heartbreaking but we try not to dwell on it and focus on the fact that we are very tight and I enjoy his company … But sometimes the pang hits …. And you wonder why it all went this way. The never ending grieving but with that is the never ending love you will always share.
Beautifully said Laurie. We do enjoy a special love with our children. One that no illness or disability can take away from us. Thank you for your heartfelt comment.
~Saint
Thank YOU for reading Susan. I am glad to be able to share my thoughts on a topic that is familiar to so many of us.
~Saint