Wednesday, September 15, 2010

I Have the Right to Worry

All mothers worry.  It's part of the job title, but for some reason, when I worry, it is perceived as being pessimistic or ungrateful.  I want everyone to know that I am going to continue to worry about my babies for as long as I live.  I will worry about my babies until they have babies of their own, and then my worry will be multiplied because I will worry about them and their babies. 

Let me first say that I am eternally grateful for my sweet, beautiful, miraculous babies.  They are my everything.  Everything that I do now, I do for my children. 

I often feel like I have to be some cheerleader for my friends and family telling them how wonderful the babies are doing.  Overall, the babies are doing wonderfully.  They are both healthy now and growing, but I still have vey real worries.  I know that things could be worse, but they could also be better.  I feel like I am expected to feel perfectly content with our situation because after all, they were 24 weekers.  Yes, it is absolutely amazing and miraculous that they are here with me.  However, that does not change your dreams for your children.  It doesn't make it any easier to accept that they still have to have ng tubes.  It doesn't make it any easier that their lungs are so much weaker than term babies.  It doesn't make it any easier to accept that Cade is going to have great difficulty in learning how to eat.  It doesn't make it any easier that he may have to have a g-tube.  It doesn't make it any easier that he won't be able to play sports.  It doesn't make it any easier that we have to be isolated all through the winter.  It doesn't make it any easier that I can't show off my babies like other parents.  It doesn't make it any easier that when our babies get a cold they have to go to the hospital.

You would never expect a mother of full-term babies to be content with a grade II head bleed, open heart surgery, chronic lung disease, a paralyzed vocal cord, and a 4 month hospital stay.  So, why am I expected to?  It doesn't matter if your baby is born at 24 weeks or 41 weeks (I've experienced both); your dreams and wishes for their future are the same.  There is not some magic wand waved over mothers of premature babies that makes them expect less for their children.

This experience robs you of so many things.  I felt robbed of my pregnancy.  After all, I missed out on the whole last trimester.  You hear people say how terrible the last trimester is.  I want to scream, "At least you had a last trimester."  I want to tell people (myself included with my first pregnancy) this.  Don't complain about your baby moving around too much; you would sure miss it if it was suddenly taken away.  Don't complain about your own back pain; maybe your baby won't need a lumbar puncture when he is born.  Don't complain about not being able to sleep; worrying about your baby and calling the NICU all night is much worse.  Don't complain about heart burn; your heart burn now might mean that you will carry your baby long enough that he won't have to have open heart surgery when he is born.  Don't complain about your baby being up in your ribs; I wouldn't have cared where they wanted to be if they could have just stayed inside.  If you think you are emotional when you are pregnant, that is nothing compared to the emotional rollercoaster of having micro-preemies.

I claim the right to express my worries without being perceived as a pessimist.  Sometimes I want people to simply agree that yes a lot of this sucks.  I don't want to always be told to be positive.  When Brenna was a baby, I worried excessively over her getting ear tubes.  Now, I realize that was a very minor procedure.  Now, we have much bigger worries, and constantly being told to be positive seems to invalidate the severity of the issue.  My son is 5 months old and can't eat.  I have the right to worry.  

My sister always tells me to be positive and I know she is going to continue to do so.  We just had this conversation, and she told me that my job is to complain to her and her job is to remind me to see the positive.  I love her for this.  She was the one who confiscated my maternity clothes after the babies were born which was a good thing since it was hard to look at maternity clothes that I had not even had a chance to wear yet.  She is also the one who made me get out of the house when I felt like doing nothing but cry.  I understand the balance and I love reading everyone's comments, but just so everyone knows, I don't always want to walk around like everything is perfect because it's not.  I will continue to have both good days and bad days.

Because I am overall a positive person, I have to say that I do understand just how lucky we are.  I have often thought of our family as "the luckiest unluckiest people in the world."  To have babies born so prematurely is really unlucky, but for doing as well as they have, we are really lucky.  They have managed to avoid a host of problems that prematurity presents.  They are absolutely amazing, miracle babies whom I love dearly, and because I love them so much that it makes my heart hurt, I will continue to worry incessantly about them. 


Donna Mossholder said...

Oh my gosh we just wrote the same post......I wrote about how it seems that we are held to higher standards to be "happier" or "perkier" or that we are not allowed to have a freak out day, like we are supposed to be made of steel and we are not allowed to complain for one second.... So weird that we are feeling the exact same way at the same time. Here Here Michelle!!!!

Donna Mossholder said...

lol just read your response on my post.....whew that felt good to let it all out didnt it!!!!! So glad I have you!! Love reading your posts and see you soon!

Megan said...

Thinking of YOU! I guess this winter when we are all cooped up at home we will just have to talk to each other over this internet! :)

I love that your sister says your job is to complain and her job is to be positive. That's a great sister! :)

Kathy Hensel said...

Yes, you do have that right, Michelle, and believe me you will always worry about your babies and their babies, healthy or not. My Mom tells me you never quit worrying about them. Your challenge is much greater and it's hard to stay positive all the time, so you need to let down once in a while. You and JIm have been so strong, and we are so proud of both of you for the way you are handling things. We love you very much. Kathy

Bridget Brandt said...

I will take them and all of the worry in a heart beat! Although---I reserve the right to change my mind after the early morning feedings this weekend.

I am still sad that you must deal with all of these extra challenges...if you had just held them in a little longer.

(I am kidding!)

Seriously, I love you so much and your strenght is amazing. I do feel like all of you mom's of 24 weekers are held to a higher standard because you all know what it is truly like to have almost lost your child and experienced a miracle first hand. There are moms of 24 weekers that will read your blog and think, how can she babies didn't make it. I would give anything in the world to have that son/daughter back, tube or not, sports or not.

It is not that we want all of you to be held to higher standards to be "happier" or "perkier", we are all trying to help you realize how lucky you are to even have your babies here with you. We are not trying to discount or lessen the pain of the lose of "normal".

We are just trying to point out that no one is really "normal" these days anyway!

And, if we are all being good friends or family...we will all continue to expect all of you to be positive and happy every single day b/c that is how you are all going to make it through this horrible time in your sweet babies lives.

(Yes, it is my job to respond positively to this post.)

Charlotte (Wagner) Hachenberg said...

Michelle, your blog is awesome! I'm glad technology has advanced for us to read these things. I had no idea until Erica & Randy told me about your blog in July that you had even had the babies. Since then I have spent hours reading your blog from the beginning and checking it every now and then for updates. I've cried, cried, laughed, cried some more. You are an inspiration to all moms. Just remember that for those people who may think you should be happy all the time, there are 100x more people who support you and love you and allow you to have complaining sessions. I feel like I could have nervous breakdowns with two healthy kids, so I couldn't even fathom the stress involved in your life. But God is watching you, and you seem to be taking it day by day and taking it well.

Erika said...

Worry. It's ok. It's never going to stop. And you are a good mother because you are worying. This forethought will make you your childrens best, most prepared advocate, which is exactly what they need!
And tomorrow, as I drive my 2 beautiful miracles to soccer; to play on a special needs team instead of a typical team, I'll remember your post, and that it IS ok to wish it were not so, yet still be so thankful that we are even playing soccer!
Thanks for the reminder, and remember, the winter exclusion, the worry, it's all worth it, they will one day overcome more than you'd ever have thought!

Vanessa said...

I haven't taled to u thru this in a while, but just because Grace isn't at C.S. anymore doesn't mean she doesn't pray 4 u and the babies, she just read the blog with me, and she said "how can someone tell her not to worry about her babies mommie, u still worry about me and i was alot healthies when I was born, those people should leave her alone" thru the eyes of a 9 y.o. I miss all of u and hope classes r going well, hang in there and feel how u want u don't always have 2 b positive even if thats your nature, u have alot on yur plate but, u r also only humane.
All r Love and Prayers for your whole family and the faith to keep being who u r .
Vanessa & Grace Hager

Lauren said...

I love that you say exactly what you're feeling and you say it in such an eloquent way. I can tell you used to be an English teacher. You should take all of your blogs and make them into a book. Seriously. It would be such an inspirational book. Not just for people who have given birth at 24-weeks, but for everyone. I know you always make me think twice about everything I complain about.