I've started and stopped and restarted this post SO many times... I've never quite found the right way to put my thoughts and feelings down, but tonight I'm just going to go for it. If I ramble or don't make complete sense, please forgive me. :)
If I said that being the parent of a child with special needs is easy, I would be lying. It's challenging. Parenting as a whole is a challenge! It's challenging whether your child has any special need, multiple special needs or no special needs. Children don't come with instruction manuals or a starter's guide or a page that says "Begin here...". There are no maps, no directions, and every child is unique in their needs - special or more typical. Yet admittedly, having a child with special needs is made more challenging - perhaps even hard - because you're thrown into a world that's filled with medical terminology, specialists and therapists who each have a specific role to play.
As the parent of this child, you have to try to keep track of each of these team members, their roles, and coordinate everyone's efforts. You have to become extremely good at budgeting, scheduling, time management, and medical care. You get a crash course in every specialty and therapy while becoming well versed in medical terminology and shorthand. I sometimes joke that I expect degrees in every specialty and therapy field by the time X turns 18. I'm only half joking though...kinda. It's amazing what you can learn (and retain!) when it's a necessity.
This sounds like it'd keep you plenty busy, right? Of course! But, there's more to it. You see, your child still needs to be a CHILD! They need to have childhood experiences. The difference is that now, you will have to figure out ways to adapt those experiences to your child's abilities. You still need to take time for yourself in all of this because having a healthy, happy parent leads to having a healthy, happy child. You need to take time for other relationships in your life - marriage, parents, siblings, friends, etc. It's a hectic, challenging life, but it's not all bad.
We see lots of posts on various sites about top ten lists for what it's like to be the parent of a child with special needs, or lists about what parents give up, or what struggles a child with special needs goes through... the list goes on and on. Many times, those posts hit home in some way or another. There's sometimes something in them that we/I read and think "Oh wow... they're describing us!" Yet, despite how some of the things in those posts hit home, I can't help but look at our lives...at X's life...and see so much GOOD!
It would be so incredibly easy to be angry or bitter. It would be easy to blame ourselves or ask why us or why him. It would be easy to see all of the negative aspects of the challenges that X has in his life. Yes, it would be easy...
The negative isn't what we see, however. We aren't grieving about what might/could/should/would have been. We don't ask why because...well, because it just doesn't matter. It won't change anything. We aren't angry or bitter about being parents to a child with special needs. We aren't angry or bitter that his life path is different than what we'd hoped and dreamed for him.
Instead, we're CELEBRATING every second we get with X. We're CELEBRATING every milestone and accomplishment. We see the beauty in his life. We see his beautiful smile, bright eyes, easy laugh, cheerful disposition, strength, determination, good nature, caring heart, gentleness, empathy, and enormous capacity to love others. We see the happy spirit that is our son. With so much good in his life, the challenges aren't so difficult.
We don't see ourselves as heroes or martyrs because we care for our child who happens to have special needs. We see ourselves as parents who are doing our best to provide for our son. We aren't missing out on life. In fact, we've been given a unique opportunity to witness what can only be described as miracles multiple times.
We don't see X as a victim of circumstance...or as a victim at all. The truth is he only knows life the way he lives it now. He doesn't miss not having various skills because he never had them at all. Whatever skills might be behind or missing don't stop him. He lives a fun, full, joyful life! Most importantly, X is not alone in his struggles which makes a tremendous difference. He is loved immensely by people all over the world who are his cheerleaders,..but most especially by his family!
What we DO see...is hope. Every day is full of hope. There's so much good...so much joy...so much love in our lives; in X's life. We will never forget the day that doctor's told us what they anticipated X's abilities and quality of life to be. We both instantly made the choice to not give up. We told the doctors, "We don't give up that easily." We don't. Neither does X. And neither should you.
No matter how hard a challenge seems to be...no matter how easy it would be to be bitter and angry...always, always have hope. The rest will work itself out.
