Take Time for Yourself

When you first learn that your child is disabled (whether at birth or after) the first 12 to 18 months are, by far, the hardest. The grief can be overwhelming at times; like being submerged in a body of water with only a  straw to breathe through. It is a natural event because we feel a sense of profound loss: the loss of the dreams we had for our child; the loss of the child we should have had…the one we expected to have. We grieve as parents that it happened to us and we mourn for our child that it happened to them.

 When we are saddened for our child who is disabled, the world around us does not stop so that we can take the time to grieve, and we certainly don't feel like we can move on.

We do not bring our child home from the hospital with a sense of well-being and thoughts of a happy future. Our child comes home with a list of referrals and a host of professionals we must now incorporate into our lives. We wonder what kind of future we will have or if there's even a future to look forward to. There is also a list of questions whose only answer seems to be "We'll have to wait and see.”

To compound matters more, we will fill out miles of paper work every time we see a new specialist and complete endless forms to see what help we might qualify for.

In the midst of all of this, there is the emotional rollercoaster you're on that threatens to totally unhinge you. There are the moments of pure clarity when we see what needs to be done and we simply accomplish it without stopping to think about how to do it. We begin to think that we are okay and that we are beginning to accept what are lives have become. Then we come crashing back down once our child does not reach the first milestone set out for him by today's standard and grief revisits us.

Anger is another emotion that threatens our state of mind and can impair our ability to be functional. It is a difficult one to get passed. We often hold on to our anger longer than our sadness.

To make matters worse (yes, there's more!), no matter what the circumstances, we as parents (and especially mothers) carry the added burden of guilt. Regardless of the reality, on some level we feel we are somehow to blame for this happening to our child.

It is a cycle that is repeated over and over again during the first 12 to 18 months, and sometimes beyond. In light of everything going on (and it's always something), there just is no time to grieve for our loss. There's always another appointment or another test and it is also the time when most of our child's limitations, both physically and medically, come to light.

How is that we don't go completely mad? How is it that the physical pain of our heart-break doesn't kill us? How is it that the world continues to spin on its axis with no regard for the catastrophic events that happened to us and to our child? How can we possibly get through this? You wonder if the grief will ever end or if you will ever be happy again.

I know this sounds cliché, but it does get better…truly! I know because I have been there. I am a Veteran Parent. While you're waiting for it to get better, there is a secret and, in case nobody else has told you, I am going to. While there is no advice I can offer that can get you through the process of grief and there is certainly no magic pill I can give you to counteract the guilt you might be feeling, I can share with you a few ways that may save you the added expense of a private room in Bedlam or a padded cell anywhere else.

The number one most important thing you can do for yourself is take a few minutes of each day just for you. “Impossible!” you say? Not true. But I can tell you that if you wait to claim your few minutes at the end of the day, it's lost. You will be far too drained both emotionally and physically and if you wait until then the only thing you'll end up doing is reviewing the day's events in your mind and starting to think about what needs to get done tomorrow.

My advice is to get up ten minutes earlier than planned (set an alarm clock if you have to) and while the house is still quiet, make yourself a nice cup of tea (or coffee). But don't stop there. I've found that in the beginning, if there is too much silence then you're more likely to get caught up in self-defeating thinking and it will set the tone for the day. Instead, pick up a romance novel and transport yourself back in time to a place full of lords and ladies or pirates and if you swing that way! If s romance is not your thing, then find something to read that is.

When you're done with your tea, sit back take a couple of deep breaths, get a grip and pull yourself together. Incorporating this little ritual into your

life does not mean that the day will have no pitfalls, emergencies, or moments of chaos. It just means that for a small space in time nothing has gone wrong…yet.

Failing that if you find you simply cannot do it, there is always the bathroom to consider. A sturdy lock is all you'll need. So what if people begin to think you have a bladder problem! Grab what you can! You are entitled to a few moments of peace in a day.

Another thing that you can do is take stock of your life. Try to figure out what is less important and either put it off or discard it completely. Unfortunately, this will sometimes include family and friends and even employers. It is more than likely that there will be some people in your life who will not take this journey with you. In a situation where you put more into the relationship than you get out of it, I say let it go, at least for now.

My last piece of advice is to find a support group. Nobody understands (no matter how much they might want to) like another parent of a child with special needs. It's that simple. If you can't find one in your town, there are plenty online. Yahoo & AOL ! has a ton of them for just about every conceivable thing you can think of.

The bottom line is this: eventually you do come back to a place in life where you feel whole again and healed. And though the timeline is different for everyone, one way to see how far we've come is to look back at where we've been.

I wish you the best of luck.

Take time for yourself