Tuesday, July 26, 2011

The Real Picture

Our lives these days seemed consumed with therapy.  All the fun things you see on the blog are squeezed in between those therapy appointments.  When trying to schedule with friends to get together, I say, "Well, we can't do Monday, Tuesday, Thursday, or Friday this week.  We have therapy on all those days, so I guess it will have to be on Wednesday this week."  As I have mentioned before, I try to remind myself that, at least, I have some control now about how my kids might turn out unlike the helplessness I felt when I was only able to stare at them in their plastic homes (isolettes) in the NICU. 

Sadly, their big sister has to go along to countless appointments too.  Soon, she will be starting school again so her days can be filled with painting, reading, and playing with friends instead of yet another appointment.  We didn't have her enrolled in school last year because of the threat of her contracting illnesses and bringing them home to babies who had just spent 4 1/2 months in the hospital and who had severely compromised immune systems.  It saddens me to think about how much she has had to sacrifice since the twins' arrival.  I know she doesn't understand that all four year olds don't spend several hours a week at their siblings' appointments, but I do wish I had more time to do normal things with her.  Actually, I think she enjoys going most of the time.  She is Camdyn and Cade's little cheerleader at therapy saying, "Come on bubba, I know you can do it" or "Yay Camdyn, good girl!"

I feel obligated to paint a real picture of our daily lives.  While we have very much enjoyed splash pads, library trips, and playdates this summer, we do still spend a lot of time in therapy and doctor's appointments.  I counted back on my calendar and realized, so far this year (Jan-July) we have gone to 145 appointments! 

I often feel like people don't truly "get it" which is likely my fault.  Looking back at early posts, I realized that I have always felt like I needed to be the cheerleader saying, "Everything was great" even when it wasn't.  It's not great to have babies 16 weeks early.  Don't get me wrong - I don't want to be negative either.  I am thrilled with how well they are doing.  It is an absolute miracle, and it is a lot of hard work!

"Don't you think they'll get in time anyway" or "she'll do it when she is ready" or "won't they catch up by the age of 2 anyhow?"  No, I don't think that.  If I have any control over it, I'm going to make sure they have every opportunity in the world, and right now, that means going to lots of therapy appointments.  Other kids were chilling out, taking it easy, growing into chubby little babies in their mother's womb for four months longer while mine were fighting to live, so yes, they have to work a lot harder to do the very same things that just "come in time" for other kids. 

Let me tell you who really "gets it" - Brenna.  She probably "gets it" so well, even though she is only 4 years old, because she is there.  She sees how hard the babies have to work to cruise, stand on their own, reach down for a toy, drink from a sippy cup, produce sounds, learn signs, etc., etc., etc.  At least five times a day, I hear her yelling, "Mommy, come look Cade is standing up all by himself!  REALLY, LOOK!" or "Look Mommy, Camdyn is pushing the chair across the floor all by herself!  Good girl, Camdyn!  LOOK Mommy for REAL!"  And even though, the babies have been doing these things or whatever else she is telling me about for a couple of weeks already, I tell her, "Yeah, look at them.  Isn't that awesome?"  I love her enthusiasm.  I wish others were as enthusiastic.  They are awesome, and so is their big sister.  They train like athletes to learn new skills; they deserve the praise. 

Last week we went to a BBQ place to eat.  I had given Cade some beans to eat.  They were a little spicy, so I decided I would offer him a sip of my drink.  I held up my drink not expecting him to actually drink, but there he was, drinking through a straw!  This may not seem like any extraordinary feat to others, but for a kid with a g-tube who wouldn't even take a bottle less than 6 months ago, this was extraordinary.  I started screaming and laughing, "Look Jim, he's doing it.  He's actually drinking through this straw."  Then his personal cheerleader, aka big sister, started in cheering him on with all the enthusiasm of a 4 year old. 

We've all had to make sacrifices, and the babies have had to work their tiny hinies off!  I'm sure we looked a little crazy at that restaurant, but it definitely won't be the last time we look crazy.  This whole micro-preemie life thing is crazy.     


Jessi said...

I really appreciate your honest look into micro preemie life. Just yesterday a friend of mine was complaining because she had to take her two boys to the dr. for a checkup... about how it was so hard being so busy that day. Ugh. I took everything in me not to loose it! So thank you for shedding light on this.

Sarah Pope said...

Sometimes I do the same thing...reflect on how busy our lives are, how completely abnormal they are compared to the average family life. We also only have Wednesdays free! That's funny. If only we lived closer, we could spend our Wednesdays together. The good thing about Breanna is that she doesn't know the difference. She's probably learning as much as the babies are just by watching them! You're doing great...and it's so nice to see another mom do whatever it takes.