Monday, March 29, 2010

The Reality of My Life

When I sit down and think about the reality of my life now, I am left speechless, almost thoughtless. It is incomprehensible that I am now living the life I am living. If you had asked me a year ago if in the next year I would get pregnant, find out it was twins, deliver them prematurely knowing they would die, and then hold them as they their hearts beat that last deafening beat I would have told you no, you’re crazy. There is no way I will have been pregnant, we’ve been trying a year already with no success. Let alone with twins, we can’t get pregnant with one, how will we manage two! Premature? No way! I was born two weeks late, us Johnston/Taylor women are made to carry healthy full term big fat babies! My babies died because they were born way too early? That’s not possible. That doesn’t happen to anyone anymore, doctors are miracle workers, they can stop any labor in any circumstances long enough to get the baby to “viability”. Babies don’t just die, they just don’t. Oh the innocence I had back then. I had no fear going to the hospital. I was a little worried about maybe having to be admitted and put on bedrest, but I had no fear for my babies, they were going to be alright. I was joking with the nurse about having to get yet another refund for my trip to Atlanta if I was put on bedrest. It wasn’t until the doctor told me that I was already dilated to 4-5 cm with a bulging amniotic sac that I grasped the reality. The reality that babies do die, that babies were born too soon to be “viable,” that doctors couldn’t always be miracle workers. It was in that instant, when the words “four to five centimeters with baby a’s amniotic sac bulging” that I lost innocence, my babies were going to die, I knew right away, without her having to tell me. Though I had that innocence before, at that point my nursing knowledge came back to me, and I forever lost that naivety. I pretended to have hope, was even dreading having to be there on bedrest for at least three more weeks, but in my heart I knew. I knew that I and my daughters were now a statistic, we were now included in the 12.8 percent, or half a million babies that are born prematurely each year, and the 6 percent of those born prematurely to be born before 28 weeks gestation. Figure that out, I and my daughters are one of the 0.768 percent of all babies born to be born that soon. Despite how small that number is, it is still too high. Anything above zero is too high when it comes to babies born prematurely.

So here I sit today. A full four months after my daughters were born and my eyes are now open, wide open. I have met many many wonderful women through the march of dimes, we all have very different stories, but the basic story is the same. Our babies were born early, too early. Some of them are angel moms like myself, and I feel like we are kindred souls. We can talk, finish each others’ sentences practically, we know what the other person is thinking without them saying it, and we know why they are feeling like that. It is so comforting to be around them, to talk to them, we belong to the angel mommies club, the club no one ever wants to belong to, the club we all hate being in. They are the best friends that I never wanted to know. While I hate that others are feeling the pain of losing their child or children, they give me support, and I would not have come as far in my grief as I have without them. Some of these women still have their children, were able to bring them home. Though it was only after days, weeks, or even months spent visiting their child in the NICU, having to kiss them goodnight and hoping not to receive the dreaded 4 am phone call, telling them something was wrong, their baby was having problems, come to the hospital quick. These moms amaze me as much as my fellow angel moms. The grace with which they handle their individual situations is astounding. They are in and out of the hospital with their little ones. Sometimes they even nurse their child from home, doing what no parent should ever have to do. They have to do dressing changes, administer IV medications, comfort their child when they can’t do things any other “normal” child can do. Things as simple as walking around the house without trailing tubes, or riding a bike, or even running their children are missing out on. Yet they smile, and their kids smile, and have such a joy for life! I am amazed every single day at these women, nursing their children for months, and even years to keep them healthy as they can be. They truly are deserving of the mother of the year award if there ever was one given. Some of these moms brought their children home, sometimes with minor problems, but they were able to escape the long term effects of their prematurity. They are however, forever grateful, because they know that fear. They know the uncertainty that goes along with having a preemie, they know what they almost lost and they rejoice in their healthy little ones. They do not take their children for granted. They are also spectacular mothers.

It is for myself, my daughters, and all the other preemie and NICU moms that I walk in honor of my daughters. That I am organizing a walk to raise awareness and remember my daughters on Guam. That I raise money, to keep this from happening in the future, in the hope that the next generation will be better off. The generation after next will have even lower rates of premature births, birth defects, and infant deaths until the number is zero. The march of dimes has provided me so much support, and so many other mothers support. The money raised will help fund research to keep this from happening again someday. Please, consider walking “with” me, join my march of dimes team and walk at your local walk. Or donate money to the cause, any little bit helps, we’re just raising money one dime at a time to find a cure for this epidemic.

Here is my reality. I am in constant pain. Though now after four months it is no longer the acute, sharp, stabbing pain I became accustomed to. It is more of a chronic pain, dull, aching, and always there. It flairs up once in awhile depending on what situation I am in, or where my thoughts go, but I am able to cope with it. There are a few things that bring on these flair ups. The biggest one is seeing babies. They remind me of what should have been, what I had but were ripped away from me. Every little coo, from baby or adult, shatters my strength. Another thing is pregnant women. I should still be pregnant, but my belly is empty. I am constantly reminded of this every time I see a pregnant woman lovingly stroking her belly. I can’t stroke my daughters like that anymore, and it hurts. So please, understand that it’s not you if I choose to avoid you when you are pregnant or have a baby with you. It’s not that I don’t like you, I just can’t deal with it just yet. I’m still grieving, over my lost daughters, and my lost pregnancy. My reality is that I am a grieving mother, only able to hold my daughters within my heart, not in my arms like I long to do.

We Walk For Them

We walk for them. My twin girls were born on November 30, 2009 at 20 weeks 4 days along. Emilyn was born and survived for just over an hour. Just after she grew her wings, her little sister Hailey was born and fought hard for two hours in our arms before growing her wings. They were 13 ounces each and 10 7/8 inches... long. We walk so no parent has to follow in our footsteps.

Saturday, March 6, 2010

Moment of Peace

I just got done making a couple blankets. I'm not sure if I will give them away or keep them yet. We'll see how I feel when I gather the blankets I've made up do donate to the hospital. It was so relaxing, almost like meditating. Just focusing on tieing one knot to the next. Not like the other flannel receiving blankets I made with the loud noises of the sewing machine. Just me and the fabric and my thoughts. A rare moment of peace in my life. My mom had sent me some fabric after I told her of making my first one in Maui. Peace is a rare thing for me to experience these days, and am so grateful to have found some today.

On my road to recovery, have my meds in the fridge ready to take every six hours for two weeks. Hoping it works this time.

Thank you for the moments of peace my little ones. Mommy loves you so much.


Peace with my puppy love laying on my knee

The finished products

Monday, March 1, 2010

Three Months

Happy three months in heaven my sweet Emilyn Elisabeth and Hailey Grace. Mommy and daddy miss you so much and we love you with all of our hearts. We are so proud of you and how strong you were for us!