Thursday, July 14, 2005

Time Ticks Away

Hello all, This is Shawn. I feel like since Teresa does most of the blogs I should announce when I come on to do one. Maybe I will start all mine with a S-, that will prevent the corny opening of "Hello all, This is Shawn". I wanted to come on here and make a brief observation. I have noticed, and if there are other parents with children who have Williams Syndrome reading this, maybe they can corroborate this, but I have noticed that our life seems top be so much more hectic now than it ever was, and it was pretty hectic before. For example: The Saturday we were driving home from the hospital, Jamie was still in Maine with my parents. Clare was still pretty tired from the anesthesia, and Teresa and I were exhausted from the three nights of constant worrying. I mentioned to Teresa that it would be nice if we went and picked up a nice dinner somewhere, rented a movie and just did nothing but lay in bed and veg out. We even vowed to not answer the phone if it rang. So we got really excited about this night of doing nothing, no bedtime routines, no baths, no fighting over meals. Just complete isolation! It was going to be great. Then as soon as we finished eating, and just started the movie, Clare began screaming in pain. We could not figure out what was wrong but she was not acting like herself. So we called the cardiologist on duty, who immediately called us back and went through her list of questions. She said it sounded like constipation and that we should take her for a drive. So into the car we went, and sure enough she settled down. So we got back home after an hour and as soon as we took her out she started screaming again. So this time I told Mommy to get some sleep and I would drive her around some more. Thankfully at 10:00pm she fell asleep for the night. Now, this is one example but there are others that I won't bore you with. We are trying to figure out for ourselves if this is normal newborn things and us trying to get into a new routine or is this how life will be from now on. We miss the days of getting Jamie into bed at 7 and sitting down with a book or watching our favorite show on TV. In the sam respect I would not trade Clare for the world. (By the way, I have gotten a few daddy smiles of my own!). I would love to be able to get us into some sort of normal routine. But if I can't, well you will all have to catch us when you can!

4 comments:

Sara said...

Wish I could babysit for you guys once things settle down!

I'm in my twentieth year of parenting, and I still hope for and treasure quiet evenings.
You'll have yours and they'll be precious. The thing is, you adjust to the amount of "free time" you have (or don't have). There's definitely not as much from now on. For example, I've had two of my children interrupt my writing of this to ask questions.

Health issues aside, all babies are different. Stacey slept 16 hours a day for the first year. Kathleen slept like two hours a day and woke me up nightly for at least the first three years. Anyway, all those smiles make it worth it.

Thanks for all the updates!

Sara

Anonymous said...

Shawn- I am NOT the parent of a "WS" child, but I have raised my own 3, and now hearing/sharing life with Drew. Babies are complex little beings. Because Clare has so many health issues, you are more 'on edge'. If this had been Jamie, you'd probably have done the car ride without any advice. All I am saying is from my experience, I will tell you that life as you once knew it is changed. That does NOT have to be a bad thing, and you will find those quiet evenings for the 2 of you, just be patient for now. I would love to be there, but know I love you all, and enjoy life as it is for now. LOVE< Aunt Joan

Auntie Becky said...

Well this is my first response and I really want to tell you how much I admire both of you. I have worked with many children with various disabilities but seeing it from this side is totally different. You both are strong and I notice such a bond between you. You're doing great and Clare has been blessed with two wonderful parents! You are in our prayers always.

Becky

Anonymous said...

S----- I had to chuckle at your quiet time notes...wanting to get back to that....not laughing at you but at myself...Our Ashley came along # 8 on the kid list and last in line....She is 4.8 now and we had a Cath done on her when she was 3 months old....that was scary, but she is doing fine now.. we still have our check-ups and all
Quiet time is when Dave and I get out for some time alone for about a half and hour or so...bedtime becuase more of a routine when school starts but there are always unexpected interuptions.....I have to laugh because I can't even go into the bathroom without being followed, OR in many circumstances, bringing Ashley in there with me because I can't leave her alone....to much she can do in damage to others and/or herself. Here's hoping you find that quiet time....!!

Jackie Burr-- SD
Ashley WS 4.8