A Memorable Weekend

I'm working on a post about Eden's new orthotics, progress in PT, and various adaptive equipment, but it isn't done yet. So for now, enjoy our Memorial Day weekend in pictures...

Grandma and Grandpa had a BBQ at their house on Saturday. The girls discovered several new things to love...playing with boys, hot wheels, and eating watermelon.

G'ma and G'pa bought these dresses in Mexico on their cruise. Holland posed nicely, while Eden chose to flash the camera!

Nana and Papa had a BBQ at their house on Monday. The girls played outside ALL DAY and LOVED it! Holland really liked playing with the big girls mixing up some mud soup. She also loved the duck pool and cried when she had to get out, even though her little feet were wrinkled like prunes. Eden was content all day to watch the action and take everything in. She did join in when she could.

And these pictures were just SO cute I had to post them...

Cannonball!!!

Finally, if you still haven't signed the guestbook, you can scroll down to the post, or click the link in the side panel:) Pretty please with a cherry on top???

We've Got Tickets!

We're going to Cali!!!!!! I'm so excited. I just bought our plane tickets yesterday. We're leaving on June 27th and coming home on July 11th. It will be our first official vacation with the girls. We've done a couple of weekend trips, but nothing too far from home for this length of time. I know it will be fun, and it will definitely be interesting...traveling with two little ones.

We're going to Oakland and we'll be staying with my awesome Uncle Keith, Aunt Katy, and cousins Abby and Drew. My parents will be coming with us, and will be a huge help with the girls, so we may actually get a little time to relax and enjoy ourselves. In fact, they've agreed to keep the girls for a weekend, while John and I get a hotel room in San Francisco!!!!! It'll be sheer bliss!!!!! Time to remember our past lives.

As excited as I am, I do start to panic a bit when I start thinking of all the things we'll have to remember to bring. I need to start a list...carseats, batteries for Eden's CI, Holland nebulizer (breathing machine), a seat for Eden...I could go on and on. It'll be a lot different than our last big vacation. The one where we went to Italy, Austria, and Germany with just a backpack each and stayed in hostels. Those days are over.

Now we'll have a different kind of fun. The kind where you get to see the world through a new set of eyes (or two). This past weekend we took the girls to their first friend's birthday party and there was a petting zoo in the backyard. Then on Sunday we took them swimming at the Y in Ohio with their aunt, uncle, and cousins. I find those kind of things so much fun. Just to see the looks on their faces when they get to actually HOLD a baby bunny, or splash in the fountain at the pool. Definitely fun, just a different kind of fun.

Thanks to everyone who has already signed our guestbook. If you haven't, please scroll down to the last post and add your comments! We'd love to hear from you:)

Guestbook

Oh boy, this is going to be fun! Over the past year and a half we have watched our blog viewership steadily climb from around 50 close family and friends, to often over 300 visitors per day. We are currently averaging around 250 unique visitors each day, with over 150 returning visitors, and nearly 100 new visitors from all over the US and across the world. Through our blog we have developed some online friendships, and have gained and given a lot of support and encouragement to others out there who are on the preemie journey along with us. Keeping this journal of my girls' progress and development, and sharing my feelings, through the hard times and the good times, has been extremely therapeutic for me. I have found you all to be a really wonderful and supportive lot! I am creating this post as a guestbook, and will link to it in the side panel, so as we get new visitors they can sign in too. So please, please, tell me who you are! Everyone! How are you connected to us? How did you find us? Why do you read? Where are you from? Are you just passing through, or have you been along for the ride? My hope is to someday share your comments with H and E, so they will know what an inspiration their story is to all of us, and they will know how much they are loved! Feel free to just leave your name if you're feeling a bit shy and don't want to leave a long post. Of course, I love the lengthy comments, but I really want everyone to participate, so even just a name would be fine! I know you are out there:)

Happy Mother's Day!

To the best MOM in the world!

We're Working On It

The girls worked on feeding themselves with a spoon this weekend. They are pretty good at it, especially considering that I rarely let them try cause I don't like cleaning up the mess!

The Pianists

Holland and I spent the entire afternoon at the ER. She has a cold or allergies or something that triggered an asthma attack, and last night her breathing started getting labored. We gave her breathing treatments twice last night, and she slept through.

This morning she woke up in terrible shape wheezing, coughing, and congested. I called the peds office, and took her in to see a doc at 10 this morning. At first they thought her oxygen was was 82, and they were going to send us to the hospital in an ambulance, but once they readjusted the pulse ox, it read 92. This was after three breathing treatments 2 hours apart, so they still wanted us to go to the ER but I got to drive. After a dose of oral steroids, and three more albuterol treatments, she was satting 94 and sounding much better so they decided to let us come home. We'll see a doc again tomorrow morning, but she is looking pretty good right now.

Man...the whole hospital routine with a one and a half year old on albuterol is not a good thing! I exhausted my entire bag of tricks trying to keep her happy sitting in a room with mist blowing in her face for almost five hours!!! Let's all hope tonight goes okay, and I don't end up repeating the whole scenario tomorrow.

Breaking Down

Over the course of the past year and a half I get a lot of compliments on what a good job I am doing. A lot of people wonder how I can do everything I do without breaking down. The truth is that I don't. I break down often, almost daily, and it's not really getting much better. Usually I am able to snap out of it without too much trouble, just by venting to John or my mom or one of my friends, but other times I go days just feeling sad and terrible. I'm kinda in one of those funks right now. When I am around other people, I just smile and carry one, so many people who know me might not have a clue how I am feeling. I don't talk about my true feelings often, to many people, because I know it is hard for people to understand and it makes them uncomfortable.

What's been hitting me hard lately is the permanancy of Eden's disability. I feel like I can bear anything for a period of time. I can lie upside down in a hospital bed on magnesium sulfate for days if it means my babies will have a better chance. I can spend seemingly endless days traveling back and forth to the NICU visiting my babies, part of the time not even knowing if they will survive. I can endure watching my children go through surgery after surgery. I can sit at a breastpump for tortuous hours every day to give my babies the best nutrition I can give. I can spend hours everyday trying to get them to eat so they will grow. I can drive to an infinite number of doctor and therapy appointments. I can give meds. I can do PT visits twice a week, and countless hours spent stretching and exercising at home. I can even handle the sleepless nights, the temper tantrums at nap time, and the food slinging that happens every time I want them to eat. I can do, and have done, all of these things with the hope and knowledge that it won't last forever. If I can just get through today, tomorrow won't be as bad. It will be worth it.

The problem is that it's not going to end. It's forever. She's not going to get better. There's not going to be a morning that I will wake up and Eden will not have Cerebral Palsy. And I can't stand it. Mostly I can't stand it for her sake, because it is so insanely difficult to see her struggle, but I also cannot stand it for selfish reasons. I often feel like I have lost myself. I will never be the person I used to be, or the person that I wish I could be. I'm afraid that I will never be truly happy and carefree again.

Eden's CP is becoming more and more apparant to everyone, even people who don't know her. The logistics are difficult. We have to plan ahead for everything to figure out how she will be able to participate. When we go to restaurants we bring her infant carrier in the back of the car for her to sit in, while Holland sits in a high chair. I often overhear people talking, trying to figure out if they are twins. They always decide they are not...because Eden must be younger. Unless they are in their stroller, no one really asks if they are twins anymore. Holland attracts a lot of attention, and people always stop and talk to her. Most times they do not talk to Eden. Even people who know us will generally talk to and play with Holland much more than Eden. I'm sure it is because people are not sure how to hold Eden, or how to interact with her, but it is still hard for us to see. We try to give her a lot more attention at home to make up for it. We also try to set a good example for others so they can learn from us how to interact with Eden.

I always thought having twins would be hard, and I was right. Having a preemie is also very, very hard. Having a child with a disability must be one of the hardest things life can throw at you. I suppose one of the only things that would be harder is NOT having her. Yes, that would be harder.