Grieving

Tertia has asked me to write a post about my experience with grief. My perspective is unique in that I have not actually experienced a loss in the form of death. But this acknowledgment, that what I am feeling is grief, is precisely why I appreciate her thinking to include me. It was, and is, the first step for me in learning to cope with my emotions. The acknowledgment that it is normal and okay for me to grieve, even though my girls have survived. The loss that I have experienced is very deep and very real, though difficult to put into words.

It is the loss of ideals. The loss of having the pregnancy, birth, and brilliant, beautiful, "perfect" children that I dreamed of all my life. I think that every parent of an extremely premature infant deals with grief over the loss of their chance at a normal pregnancy, without the heartache of the NICU and the struggles that continue once you get home. I am sure that every parent of a child with a disability also deals with grief over the loss of the child they had imagined.

Time helps to lessen the grief. I can only imagine that once a preemie begins to walk and talk, and begins to appear more on track developmentally, the grief over the NICU experience lessens. But when your preemie survives with more significant disabilities, you have a constant reminder of your grief. After three years, there is not a single day that goes by when I do not think about their prematurity. Not a single day goes by that I am not reminded of their disabilities.

But it is getting better. The days spent crying, and not wanting to wake up in the morning, are definitely fewer and further between. The joy of having them in my life, and seeing them happy and thriving, is slowly drowning out the sorrow.

But still, there are bad days. Days when the big questions loom in my thoughts. What would Eden be like now if she hadn't been a preemie? What would THEY be like? How would my life be different? Is it my fault? These questions are so hard for me. They arouse such sorrow and heaviness and guilt. My hands tremble as I type them, and I wonder if I should really put them into words.

I am reminded of these questions at random times. Like when I am struggling to get Eden out of the bathtub, all wet wriggling 22 pounds of her, and I think "how will I do this when she is 18 and weighs 90 pounds?" Or when I am carrying her into the restaurant, and she spies Holland walking and squeals and literally tries to leap from my arms to get down and walk with her. Or when, for the third, or tenth time that day, I watch her looking on as the other kids run and jump and play, with such longing in her eyes. Waiting, and often demanding, for someone to get her and help her to join in the fun. When I am tired, and my body aches, as I crawl with her through the tunnel for the umpteenth time, or hold her on the monkey bars, or push her around on the firetruck, because...well, because she wants to and I don't want to hold her back because of my own limitations.

Having a child with a disability can be very isolating. I think grief in any form is probably isolating. Part of it is because other people don't know the right thing to say. Another part of it is because I don't know the right thing to say. I don't want to monopolize every conversation by talking about myself and my kids, but it's difficult to make small talk when such huge thoughts are looming in my mind. It's like the elephant in the room.

I've struggled to find a balance, and for me this blog, and my online support groups have been vital. This is where I can "let it all hang out." Where I can laugh, and cry, and share, and vent, and brag until I am blue in the face without feeling like I am burdening anyone. It allows me to get my feelings out, to let everyone know how I am feeling, without putting us in an awkward situation. It also allows people to reflect on what I have said, and to respond in a more supportive and thoughtful way.

I am lucky to have many awesome and amazing family and friends who are generally thoughtful and supportive people. People are all different, and not everyone is comfortable providing emotional support during stressful times. I try to be respectful of this and I definitely don't hold it against people when they say the "wrong" thing. I'm not sure there is really a "right" thing to say that will work equally well in all situations. I do know that it is important to let the person who is grieving set the tone. I hate to give a list of things NOT to say, because many people reading have said these things to me, and I honestly take them as they are intended and do not hold them against anyone. I know when your heart is in the right place, and I appreciate the effort.

That said, it isn't particularly helpful to hear things like "everything happens for a reason," "God doesn't give us more than we can handle," or "it could be worse," when you are in pain. Things like "at least she's cute," and "they never should have been saved in the first place," are even worse. "You are a stronger person than me" or "I could never do what you are doing" are also difficult to hear, because trust me, I would have said the same thing to someone else in my place three years ago.

But gosh, with so many things NOT to say, what CAN you say? You can say that our children are beautiful, that you think we are doing a wonderful job, that you recognize the blood, sweat, and tears we have put in to get where we are. You can listen to me, laugh with me, rejoice in their progress with me. I don't want your pity, but I will take your empathy. When I am down, and looking for a shoulder to cry on, you can cry with me.

Cecily, Snickollet, Alida, Vanessa, and Tertia are all doing posts about grief, and reading their posts will offer different perspectives on the topic. Linda, Sarah, and Liz have also taught me a lot about how to support and provide comfort to someone who is grieving. Thank you all for putting your thoughts and feelings into words. It means so much to many people who are looking for someone who understands.

Fashion Show Pics

Sorry, the pics aren't great, but you get the idea... I don't usually post pics of other people on my blog, but since Allison and Shannon both have their own blogs, I think they are fair game:)

Set One: "A Family Affair"

My Family



Allison's Family


Shannon's Family


Set Three: "Holiday Celebration"

Fashion Show Speech

My pregnancy seemed to be a pretty normal one. John and I had been married for 6 years, and were elated at the idea of adding a baby to our family. We planned the pregnancy, and put a great deal of thought and research into the type of birth we wanted to have. I received prenatal care from a well-respected midwifery practice, had regular check-ups, ate all the right things, avoided caffeine and alcohol and second-hand smoke, and basked in the glow of my pregnancy. I loved my growing belly, and felt overwhelming joy every time I felt the baby move.

It wasn’t until almost 24 weeks into the pregnancy that my world came crashing down. I began feeling poorly, and started to wonder if the pain I was feeling could possibly be contractions. Just after arriving to the hospital, with absolutely no idea of what was to come, I received two of the biggest shocks of my life. First, I found out I was having TWINS! Second, I was in labor and already dilated to 4cm.

Holland and Eden were born four days later on July 31st, 2004, 16 weeks too soon. At birth they weighed 1 pound 3 ounces, and 1 pound 5 ounces, and were just under 12 inches long. They were perfectly formed, and to me, already beautiful. There was no infection, no abnormalities, and never an explanation for why they came so early.

We were told prior to their birth that the chance they would both survive was slim, and that IF they did survive, it would likely be with some degree of disability. Looking back now, I don’t think that this information ever really sank in. We knew from the beginning that we desperately wanted them, and that we would love them whatever the outcome would be.

Prematurity is not something you can plan for. It is something that you gloss over when you are reading “What to Expect when you are Expecting.” You think that it won’t happen to you, that it CAN’T happen to you. When it does, it is just pure luck that lands you in such a place as the NICU at St. Joe’s. Our girls spent the first 110 days of their lives in the NICU. During that time we certainly had some very long and very sad days. Both girls were transferred out for PDA ligation surgery on their hearts. They both underwent laser surgery on their eyes for retinopathy of prematurity. We lived through more than one infection, one which Holland almost didn’t survive. Both had some degree of bleeding in the brain. Both needed a lot of coaxing to learn to eat and grow. Many people refer to the NICU course of a 24-weeker as a roller coaster. I don’t like that analogy because we choose to go on roller-coasters and we enjoy the thrill. There are no thrills in the lows of the NICU… just grief and devastation.

But our time in the NICU was also filled with small moments of happiness, and even times of great joy, many of which were made possible and enhanced by the staff who worked with our babies. I clearly remember the nurse who asked if I wanted to hold each baby for the first time, and how much work they would do to get us ready for kangaroo care. I remember the care with which they taught us how to touch our babies, how to change their tiny diapers, how to take their temperatures. I remember a special nurse who would take pictures of them doing cute things at night, when we weren’t able to be there, and taping them to the isolette to surprise us when we came in the next day. I remember the excitement of our rescue team who came to another hospital to pick Eden up after one of her surgeries, and how happy they were to have her back safe and sound. I remember the doctors giving hugs and high fives when Holland’s platelets finally went back up following a nasty infection. I remember, when things were slow in the NICU and our babies were doing well, doctors sitting with us to chat about good places to eat. I remember them listening to our endless questions, and sitting down with us to draw diagrams to help us understand complicated medical issues, never annoyed by our incessant attention to detail. I remember the nurse who helped us give their first baths, and dressed them in real clothes for the first time. I remember the support and encouragement they gave me in pumping and attempting to breastfeed, and how they kept me motivated by always oohing and aawing over the calorie content of my milk. I remember them crying with me over the loss of another NICU baby that we had befriended, and how I realized then that these babies are so much more than a job to this NICU staff. They really and truly care about each baby and family, and they make each tough medical decision just as they would if it were their own baby. I remember that I felt loved…and I don’t think you can feel like that in the NICU of every hospital.

Holland and Eden are three-year-olds now. They are vibrant, loving, and smart, and they are the joy of my life. Our struggles did not end when we left the NICU. We went home on oxygen, and monitors, and with countless doctor appointments for the first 6 months. Holland has had ongoing issues with her lungs and her vision. She has had surgery on her eyes, and has been hospitalized several times with pneumonia and respiratory illnesses. She has been diagnosed with mild cerebral palsy, and did not start walking until after she was two.

Eden was diagnosed with profound bilateral hearing loss at 6 months of age, and underwent a cochlear implant surgery when she was 14 months old. She has more severe cerebral palsy, and will likely never walk independently. Both girls have had ongoing issues with eating and growing, and feeding them has always been a source of worry and stress.

While I feel like it is important for the general public to be aware of the ongoing issues that extremely premature infants face, I really hate listing their disabilities or medical issues when describing them. Terms like “chronic lung disease,” or “profound hearing loss,” or “cerebral palsy” do not give you any insight into the little people that they are becoming. Those things are such a very small part of who they are. I’d rather tell you about how Eden’s smile lights up a room. About how they both say “I love you Mommy” and give the absolute BEST hugs and kisses. About how their excitement over the simplest things is completely contagious. About how they love to play ring around the rosie, feed our dog way too many milkbones, and each hold one of my hands while we walk around the living room pretending were going on an adventure. They love to dig in the sand, run full speed through the sprinklers at the water park, sing along to their Elmo videos, and think we are the absolute best parents ever for taking them to meet Clifford the Big Red Dog.

I am not a person who believes that everything happens for a reason. Sometimes bad things just happen. What I DO believe, is that when bad things happen, we can become better people because of them. We can learn and grow from them. We can take the negativity and turn it into something positive. I am a better person because of my kids and what have gone through following their traumatic birth. I do not take life for granted. I don’t sweat the small stuff. I have learned to appreciate every step of progress they make, no matter how small it may seem. I am better able to support people who are going through similar circumstances. I am more compassionate, and a better advocate for my children’s needs than I may have been otherwise.

I addition to all of that, I have had the opportunity to meet so many incredible people that I would never have known otherwise, and my life is richer because of them. Thank you so much to the NICU staff of Saint Joseph Mercy Hospital. For the dedication and compassion you show to the babies and families you care for. And for giving us so much to be thankful for.

Top Ten Best Things About Having a Micropreemie

10. Not as much baby weight to lose.

9. You get to take full advantage of your medical benefits.

8. You don't have to worry about cooking. They won't eat it anyway!

7. They are not as heavy, therefore easier to carry around.

6. They can wear their clothes a whole lot longer.

5. Very competent babysitting for the first 3-4 months (maybe more).

4. You don't sweat the small stuff.

3. You don't take life for granted.

2. You have the opportunity to meet so many amazing people, doctors, nurses, therapists, families, friends, and bloggers who go above and beyond to help you, support you, and give you a shoulder to cry on.

1. This...

Happy Homecoming Day Edie!

On this day, exactly three years ago, Eden came home with us for the very first time. We spent the next four nights awake, staring at her while she slept. Then Holland came home, and we didn't sleep for the next five months.

Happy homecoming day Edie. Thanks for making our home such a happy place to be!

WalkAmerica Awards!!!

Tonight we attended our second annual March of Dimes WalkAmerica awards. Last year they were held at Comerica Park, and we got to watch a Tiger's game. This year they were held at the newly opened MGM Grand Hotel and Casino in Detroit, so we got to blow a whole $5 on absolutely nothing in less than 30 seconds.

Last year I received an award for being the #7 individual walker for our region. This year I got an award for being the #2 individual walker, and another award for being the top family team at our walk site!!!!!!!!! Pretty cool, huh? I need to find out how much the #1 walker raised, so I know where to set our goal this spring;)

It's such a small world too... Right when we got there I spotted a girl (woman? lady? chick? I never know what to say there...I'll stick with girl because that's what I would prefer myself) that John and I went to high school with. She was there with her husband, who also went to our high school, and their 4-year-old twin girls, Sydney and Olivia, who are former 25 weekers. Her girls were so cute and really reminded us of H and E. They made us miss our girls and wish that we had brought them with us...well, kinda. On the other hand, a night out sans kids was pretty nice too.

Stepping Out...

...out of my comfort zone, that is.

Sorry I haven't been keeping up with my blogging lately. I am swamped beyond swamped with things to do. We are in the last stages of preparing for this year's NICU fashion show. I am only doing a small fraction of the work, but boy does it feel like a lot. I put together three awesome slide shows for the event, and I am busy writing my speech. I am going to tell our family story this year, in front of a crowd of more than 300. Holey moley. That really is out of my comfort zone.

I am NOT a public speaker. I am actually quite shy in groups until I feel comfortable and get to know the people.

I want to do it though. I am hoping it will be a great experience for me to really break through my fear. I was an absolute wreck in college when I had to do public speaking or presentations to the class. I would get SO nervous I could hardly speak. But this is different. I am going to be talking about my kids, and about our experience. It's the one thing I am an expert in. Obviously I know my subject matter!

I was actually feeling pretty okay about it until this week when I was writing the speech. I had to stop and cry with every paragraph. I wonder if there is any possible way that I will even be able to get through it. I don't mind some tears, or showing emotion. I just don't want to have a complete breakdown and not be able to speak. I hope I can do it. I think if I go through it several times, maybe it will be easier when the actual time comes. Or maybe I need a couple of glasses of wine??? Are there any good pills I could take???

The fashion show is next Thursday at 6 in Ann Arbor. I have tickets available to sell if anyone out there is interested in coming. If you haven't let me know already, just send me an email and I'll give you the details. I took 20 tickets to sell, thinking it would be a piece of cake. I mean, who doesn't want to hear me talk? Or see me in my holiday evening wear? Or watch my two adorable daughters ham it up on the stage? On top of ALL THAT, it's for a good cause. The best cause, actually. The ticket money will be used to support the best NICU in the world...the one that saved my babies' lives!