What do you do when your world turns upside down? When one morning you wake up and realize that black is white and stop means go? How are you supposed to feel in that moment when you learn that sometimes things don't go just as you planned? That dreams change, and lives shift. That finding out you are pregnant doesn't mean that you get to have a baby. That having a child may not always mean what you think it does.
We have this preconceived idea of what parenthood should look like without even thinking about it. Life can be so obliviously happy and carefree when we get to assume certain things. For example, we assume that having a baby will be "difficult" but at the same time we have visions of bassinets and bicycles, prom dates and graduations. We figure we can handle the "difficult" parts, such as sleepless nights and getting them to eat their vegetables, because we have these other good things in our future. These assumptions are important because they are what make life great. They are what keep people hoping and living for tomorrow. But, these are also the things that are lost and mourned when life takes a turn that you weren't expecting. Assumptions are luxuries, and ones that you won't find in the home of a "special needs" family.
I say family because it's not just one of us who has special needs. It's true that our youngest son has the challenging medical history, but he isn't the only person affected. We have other children, and their needs matter too. It's vital that we know the extent of our son's medical needs, his medications, his therapies, his appointments. But it is equally important that we remember that today is "red" day at preschool, or that our oldest son wants to be reminded to take his Papa's guitar for show and tell. We must also be aware that while other children are giving thanks for their friends and families that our 6 year old daughter gives thanks for hospitals and doctors because they "saved" her little brother. My husband is just like any other man wanting to protect his family and control any situation that may cause us harm. His needs are knowing that we appreciate everything he does for us, and helping him to realize that it takes all 6 of us protecting each other, that no one member of our family can do it alone. My needs are relief from constant fear, and the realization that my life cannot be lived for someone else. As much as I love my son, I need to be reminded that my life matters too.
Special needs families don't think about where to take their next family vacation. They think about IF they ever will, or IF they'll all be there to enjoy it. They remember what it was like to dream about bicycles and prom dates, but they now jump for joy at the sight of adapted walkers and a single look of acceptance. Their diaper bags are so full of medical equipment that they find they have no room for diapers. However, despite the loss of assumption, the shift in dreams, the change in life's path, I think you will find that special needs families are genuinely happy. We have a greater understanding of what it means to cherish the moments we are given. We see the futility in planning one's life, and instead learn to roll with what we've been given. This is not to say that there isn't anger and pain along the way, it's just that when our lives turn upside down...we simply learn to walk on our hands.