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.