When I think of what I would like this blog to be and how I can make that happen I feel totally inadequate, overwhelmed and humbled. Because, even though we have been through so many horrible and scary experiences with our son, Matthew, it is so small compared to what so many other parents struggle with daily. Here are some sobering words from a poem sent to me through the Moms on the Move network.
Some of the content is American based, which just helps me to count my blessings, and be thankful that we have a medical system that does is best to take care of our children, despite cut backs and a lack of medical professionals to go around. I am grateful that I have never had to argue with an insurance company or make a choice between groceries or medical care. I am grateful that I live in a place that understands that our health is more important then national security. And I am grateful that my child continues to improve under watchful care of community workers, health care professionals and government agencies. Some might say that our Canadian systems are not perfect and the government needs to do better. I say lets keep working at that, and at the same time, thank God we live in Canada. Let's pray for a better future for our American neighbours.
I didn't intend to get political in this post...it just happened.

Where are the Parents?

By Sue Stuyvesant

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.

They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet.

They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube.

They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through?

They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.

They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm.

They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of there own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.

They are struggling to keep a marriage together, because adversity does not always bring you closer.

They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.

They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.