Friday, November 27, 2009

It Is The Most Wonderful (and stressful) Time Of The Year!

The holidays! Usually, it begins for me about a week before Thanksgiving and doesn’t go away until sometime after the first of the year. Every year I shout and say, “I will not do this next year!” Every year, I stress worse than the year before. But this year, I mean it!

We all have limits. For me, it’s come down to a matter of priorities. The following is my priority list:

1. Stephen
2. Stephen
3. Stephen
4. Stephen
5. Stephen
On and on, etc.

Get the picture?

Believe me, I am not complaining. Next to Jesus Christ, my husband and son are of most importance to me, but I’ve become aware that my priorities needed realigning in a most serious way. I realized that I was still trying to keep up with who I was twenty years ago, keeping the same holiday traditions and ideals. Only, my life has dramatically changed since then.

The reality of my life has recently made itself known to me like a roaring lion in my face. The realization came to me this week, the week of Thanksgiving, that first and foremost, I am the primary caregiver of a precious person with multiple disabilities. I’m not really sure when my life shifted from parenting into the role of parent AND caregiver. It was a slow and subtle process. That’s a good thing, because if it had been overnight instead of gradual, it would have knocked me off my feet. I personally know a few parents whose parental roles were quickly shifted into nurse/caregiver overnight due to a child being in a serious accident or a sudden illness and I’ve seen the effect of that shock. God Bless those precious families. I understand that I have so much to be grateful for.

If you are the parent of a child with special needs or if you are the caregiver of an aging parent or spouse, and if like me, you expect more of yourself than humanly possible, I am about to tell you something that you probably need to hear:

Let go of perfectionism!
It’s okay to lower your standards of what a clean house should be. It’s okay to order a pre-cooked holiday meal! It’s okay to accept help. It’s okay to delegate, and last but not least, it’s OKAY to say NO!

I’ve had a total of two weeks and two days of respite since last May. You all know that we had to take Stephen out of school because of the swine flu outbreak. Also, he is scheduled for oral surgery on December 3rd and to be perfectly honest, I’m more concerned about Stephen and his health than whether or not my pumpkin pies turn out just right. It is a wonderful feeling to finally release myself of that petty responsibility so I can focus on caring for the most precious gift on earth God has given me. I think in my case it had to take pure exhaustion to finally admit that I can’t do it all. Please don’t let that be the case for you!

If you are reading this and have a small child with special needs, take it from the parent of a teenager with special needs -- you will need your strength, health and sanity as your child grows into adulthood. Take whatever steps necessary for your family. In order to put your child first, you will have to let some things go. And it’s okay to do that!

* My plan for my next entry will be to list a few examples of how you can cut back on your holiday stress so you and your family can still enjoy your traditions.
* Another soon-to-be entry will be a message for family and friends of caregivers. I will give you a few hints of ways you can help the caregivers you know, as well as a list of things you should not do -- especially around the holidays.
* I am also thinking of making a list of things you should and shouldn’t say to the caregivers you know. It would be nice to hear from other parents/caregivers before doing this. I have a feeling we all have something to add to that one.

Now, let the holidays begin! I’ve got a new attitude!

Thursday, November 12, 2009

Hello Friends!

Just a quick note to say we're doing okay. Things have been so chaotic for us this fall!

* I mentioned before that Stephen's doctor recommended we avoid crowds until the swine flu outbreak is under control, or until we have Stephen vaccinated. Hmmm ... I have a lot of research and praying to do before we vaccinate. We all three got the seasonal flu vaccination as always and did fine. With Stephen's heart and lung history, we need to avoid any possibility of pneumonia.
As a result of this, he is receiving home bound services through the school. His teacher is coming to our house twice a week to work with him. He and his teacher have never met before this year, so this has been a great way for them to bond before he is released to go back to school.

* We are getting all of our ducks in a row for Stephen to have oral surgery. Ugh! I had no idea how many doctors we were going to have to go through to get this done. His cardiologist, neurologist and even the geneticist have all got to send their most recent notes to the anesthesiologist. I am thankful they are taking all of the necessary precautions and taking his history into consideration before the surgery. This will be done in an operating room setting at the same hospital he was born in. We haven't been there in a long time, and have some very emotional memories at that place. I'm a nervous wreck because there are always risks involved with anesthesia. His lung function is good though, and we've been keeping him well, so that's a good thing. He is having all four wisdom teeth extracted and two other teeth that have teeth coming in under them. Dear me, the child has perfect teeth -- never a problem with them, except, he has too many of them ... Poor baby. :(

If he has the surgery before Thanksgiving, looks like he'll probably be eating puréed turkey. I'm hoping we can schedule it for right after Thanksgiving so he'll be healed up well enough by Christmas.

We appreciate everyone keeping him (and us!) in your prayers! I'll keep you posted.