Remember how when we were young:

we would marry prince charming

we would have a perfect baby boy

two years later we would have a perfect baby girl

we would have a beautiful house, our kids would be healthy, smart, athletic

and we would live happily ever after.

Life ain't like that.  And some people seem to have more loaded on their backs than others.   And life ain't fair!

I am, in a way, caretaker of my husband. He would  probably not do well at all living on his own (not that we would WANT him to).  I have to make sure he eats reasonable food on a regular basis. It's nothing heavy duty but there are certain things he will never be able to do well enough to be completely independent. I also manage all finances, appointments and all that stuff. I am also his advocate for brain injuries and mental health.

Brain injuries are funny that way.

Poppy says "we entered an extremely long and agonizing period of mourning for ourselves and Haley".

I have great empathy for this family as I have a little bit of understanding as to what it means to mourn . . . I have spent many years of my life "mourning" what I hoped would be a normal life for my beautiful healthy perfect baby girl when she reached the stage in her development (at age 3 1/2) where a neurological disorder would present itself and be manifested in disabilities with her co-ordination, motor skills, vision, and some cognitive functions.  I always think I have come a long way in the mourning process . . . but as I age and wonder about her future "when I am gone", I find fear is replacing my mourning. 

I have entertained those "life ain't fair" thoughts, seeler, on many occasion.  Generally I am very appreciative and thankful for the many gifts, personality, functions, and abilities my child does have - but there are days (weddings, births of grand-children, etc.) that those nasty "ain't fair" thoughts sneak back in.  I am a work in progress .

trishcuit - you are a caregiver in a unique way with your husband.  I hope you have others in your life to encourage, support, appreciate, and give you strength when you need it.

Ah Beloved, I think this is the place that makes the difference.

When caring for an aging parent or spouse, the care giver can draw on those life experiences for support but with the child one can not.  So for the care givers of children they must adopt different strategies for coping and finding hope.

I think to it is important for those outside the care giving circle to realize this as well.  To acknowledge that parents/grandparents of special needs children have different milestones and when those are achieved to appreciate and express the same enthusiastic emotion one does for "normal" celebrations like weddings, etc.  It is the collective response that makes those milestones "special" not the event itself.

Perhaps instead of thinking that life isn't fair, we need to see that each life is not the same, that each life can be wonderful in its own unique way and we can be active participants in finding that wonder.

I am nothing special, of this I am sure. I am a common man with common thoughts and I've led a common life. There are no monuments dedicated to me and my name will soon be forgotten, but I've loved another with all my heart and soul, and to me, this has always been enough..
       Nicholas Sparks, The Notebook

I remember one year at work::  in an company with about 30 female (and 15 or so male) employees, six women were pregnant at the same time.  The manager joked that there was something in the water.

My department head, an intelligent woman lawyer,  gave birth to a profoundly disabled little girl - her first child.  

As people came back from maternity leave (I think it was only about six months back then) we would gather in the staff room over lunch.  Naturally with so many babies (and other people with toddlers or pre-schoolers) much of the conversation was about babies.    My boss didn't eat in the lunch room every day (she was management - she often ate alone at her desk) but one day I remember her being there as the room buzzed with accomplishments - somebody's baby was on solid food, another was sitting up, another was crawling.    I wasn't saying much - my kids were older - but I was very aware of my boss sitting there and also left out of the conversation and I didn't know what to say to her.    Then one of the women turned to her and asked:  "What about little Mary?  How is she doing?"   and my boss was able to share news about her baby.  "She is learning to swallow so we are hoping we won't need to use the feeding tube much longer.  And we've noticed that she seems to enjoy music.   If she's fussy, she seems to calm down when I play the autoharp, or play quiet music."  

People with disabled children are parents too.  Acknowledging that she was a mother, that her child also was developing - however slower and differently than other children - included her.  She and her child were not invisible.  Everybody in the lunch room felt more comfortable when we acknowledged this. 

Little Mary recently celebrated her 30th birthday.

This is very true, and it is a space I try to stay in.  And after many years I believe I have found that acceptance.  I truly do appreciate the uniques and wonderfulness of my child.  But there are days it is difficult to keep the fear for her future at bay . . . on those days I need to be reminded of this.

This is, obviously, a thread that speaks volumes for me.

When Matthew was a few months old I gave away our "what to expect during the first year" book.  It was obvious that Matthew was never going to achieve any milestones.  At 13 years of age he still has not mastered head control.

Matthew's thirteenth birthday was a week ago.  I reflected on the fact that while most parents are grappling with when their child is old enough for a cell phone and are they mature enough for a costly Ipod I purchased my son board books as a gift.

Yesterday I spent the day at the hospital because his GJ tube is out....again. This one actually lasted the longest.  Four months.  Previously he went through six tubes in four months with day surgery for every tube.  Two lasted only four days.  The hospital emergency room, GI department and interventional radiology know me by name and the child and youth workers know Matthew's favourite videos. Matthew has been an inpatient twice in the last six months in addition to all these day surgeries and ER visits.  During the summer months we averaged one trip to the hospital a week (the hospital is an hour away).  His right hip is now dislocated and we are concerned we are going to have to deal with the stress of a major surgery simply to manage his pain.

We have narcotics in our house and use them regularly (for Matthew!) because of chronic pain.

I spend most of my life watching milestones pass in a completely different way than I expected. I spend most of my days feeling mostly out of control.  I am dependent on the schedules of caregivers and nurses. If a night nurse books off sick guess who doesn't sleep.  I am dependent on Matthew's health.  I can make plans but if all this "stuff" doesn't cooperate everything goes out the window.

I live with the awareness that Matthew's life expectancy is frighteningly short and I will more than likely outlive him.  Sometimes I feel that everywhere I look there is amazing possibility for grief.

There are a lot of days that I think this life kinda sucks.

I would agree with both statements.  Life is NOT fair.  Why else would a little boy live with chronic pain. severe medical problems and profound disabilities.  But yet I also agree that we need to create a world where the range of ability, illness and so on have a place in our journeys.

I have the rare opportunity to make a difference in a unique way.  Both in the life of my son and in my advocacy that we become a better world that includes people with disabilities in a more holistic and meaningful way.  I glipse, daily, into the face of the Divine....one who loves unconditionally and suffers with a grace that I will never, ever match.  I am a completely different person because I am Matthew's mother and my other two sons and my husband are also, different, more compassionate people.

Sometimes I pity people who do not have the opportunity to walk this journey.  While there is no doubt it sucks,  Mostly for Matthew but often for me, his mother.  It is also a rare opportunity to experience transformation, grace and compassion. 

DaisyJane and Beloved - thank you for sharing that little glimpse into your lives.

DaisyJane - I don't know if this would be helpful for your son or not, but did you know that they make IPods for people with disabilities? A child that I know, who is also severely disabled, has one. She is learning to turn things on and off, so her IPod is hooked up to a switch button. Of course, this IPod is expensive, so it's not actually hers - it belongs to the local children's health organization, who have a lending library of toys and gizmos like this.

You beat me to it somegal! LOL

Hi daisy Jane

 I was going to suggest revisitng the IPAD idea for Matthew as well.  If he likes board books-here in BC there is an online collection of talking books. Many students use a switch to tuen the page.

The IPAD apps are truly amazing. We are using them for cause and effect, the IPAD can become 1-6 switches etc.

But yes Daisy Jane your journey wih Matthew has been unique and not the same as the journey with your other children.

Beautifully written DaisyJane and thank you for sharing.

Since the WonderCafe first opened I have appreciated the opportunity of following part of DaisyJane's journey with SpecialSon, Matthew.  It has given me a rare and valued insight into the lives of a family living with a situation that I really couldn't even imagine until these last few years.  I was blessed to meet DaisyJane and Matthew a few years ago.  She is truly a wonderful, intelligeent, insightful, strong person, and Matthew is a sweet child.   

Daisy, although you are not on the Cafe as often now, I always look forward to your posts on various topics.