Happy Halloween!

I really cannot believe that this is Holland and Eden's FOURTH Halloween! But it is, the pictures prove it:) Happy Halloween, and Happy Two-Years-Hearing Day to Eden!

Thank You Nana

Reason number 1,234 why I have the best mom in the world...

A Cute Boy

Holland: "I don't like that sound Mommy, it's scary."
Mommy: "It's not scary Holland, it's just Mike and Shane and Daddy playing music."
Holland: "Oh, Daddy's not scary. He's just a cute boy!"
Mommy: "Yes, Daddy is a cute boy. How about Shane, is he a cute boy?"
Holland: "Noooooo."
Mommy: "How about Mike, is he a cute boy?"
Holland: "Nooo Mommy. He's not a cute boy. Just Daddy. Just Daddy's a cute boy!"

For the record, Mike and Shane are cute boys too. But Holland only has eyes for her Daddy.

And then it went south...

These pictures were taken on Saturday, just before things got ugly. We went to a Halloween party put on by our local PBS station. It was crowded, and loud, but the girls had a great time riding ponies and meeting CLIFFORD! They were truly in their glory, especially Holland who ran up to Clifford with a great big hug, and didn't want to let go. I swear she is a character junkie.

After we left the party, we went to lunch and did a little shopping. The girls ate an awesome lunch, and were so cute and sweet. It wasn't until about 6pm that everything went south. Eden started acting really strange in the car. She was grunting and breathing really funny. We almost pulled over because her breathing was so weird. After we got home, she got distracted and quit doing it, but it happened twice more before bed. It was stressful and scary and I have no idea what it was. We racked our brains trying to figure it out and almost thought we would have to call 911. She didn't eat a great dinner, and wouldn't finish her bedtime bottle, but went to bed fine because she was exhausted. She woke up at 3:30am doing the same thing, and that is when it crossed my mind that it could be seizures(???). She also had the beginning of a fever, 99.5 under her arm. She quickly fell back asleep and slept with me the rest of the night. The next day she had a higher fever, 102.5 under her arm, but no more of the weird breathing episodes. By the next morning, the fever was gone and she was fine. I figure it was the same 24 hour bug that Holland had last Thursday.

So then we thought it was over...

...until Tuesday night when Holland woke up at 2:30am throwing up in her bed. I cleaned her up, changed her bed and put her back down. Approximately three minutes later she puked again, this time all over her pillow and in her hair, so I had to get her up and give her a bath. We brought her back to bed with us where she promptly threw up again. Gah. So, we pretty much didn't sleep that night.

Last night it was Eden's turn. Pretty much the exact same scenario within the same time frame.

It's sad and frustrating how life can be flowing along pretty smoothly, then one little sickness can put me back in that scary, sick place that I thought I was past. You know, that sick feeling in the pit of your stomach...that worried, stressed, and very very afraid feeling. I wonder if that feeling will ever truly go away.

At least in terms of this recent illness, I hope tonight will be a turning point.

Working on Wheels

This past Monday Eden had her first evaluation for a power chair, as well as a boatload of other equipment. The appointment took 2 1/2 hours, and she was amazingly good considering how long that is for a 3-year-old!

Edie got to try out a demo chair that they had available, and you should have seen her little eyes light up when she figured out that she had the power to make it GO! At first, she could only make it go backwards, but within just a few minutes she figured out how to move forward. She went down the hallway, and out the front door with a little help keeping it straight. When the door opened and she went outside she exclaimed "WOW!" Very cute. I am betting that once she actually gets her own chair, it will be merely a matter of hours before she is cruising in her chair.

The chair we tried was the Quickie® Z-500™. It is just one of the options we are considering. Others include the Power Tiger and TDX Spree by Invacare, and the Koala and K300 by Permobil. We have another appointment a week from Monday to try the Koala, although with our insurance situation it might not be an option. We are actually leaning toward the K300, but because it is new we can't try that exact chair. There are pros and cons of each, but the K300 seems like it might be a good option for Eden, and it comes in PINK, which is not a MUST, but is definitely a BONUS!

We've also started the process of ordering Eden her own Pony Gait Trainer, a bath seat, an adaptive potty, and we're looking at a couple of seating options. Everything we have been using up until now is borrowed from either the private physical therapist, or from the school district. It's scary ordering equipment. It's SOOO expensive, and once you get something you are stuck with it, even if it doesn't work out. I am not sure, for example, if Eden could sit well on the Leckey potty I linked above. We have a little yellow potty seat borrowed from the PT that she sits GREAT in, but the company doesn't make that one anymore, and the equipment supplier we are working with doesn't work with that company anyway!

I would pay for this potty chair myself if I could, because Eden has been using it as a chair in the sandbox, and on the floor. It is perfect in terms of letting her sit at the same level as Holland, with just the right amount of support. I've thought of having my mom make a cushion for the bottom, so you can't tell it's a potty, and she could even use it as a floor sitter at school to sit in circle time. So many of the other options that are available are quite exclusionary, and difficult to get her in and out of.

While the wheelchair is a great thing for Eden in terms of giving her more mobility and independence, I hope that she doesn't start refusing to use her Pony. I also don't want her to end up sitting in the chair ALL DAY at school because it puts her so far away from the other kids. My goal is to keep her at the same level, doing as many of the same things as the other kids as we can. This is much more difficult than I anticipated. Even in her little speech group at school we are having a hard time coming up with good seating options. The little chairs that they have available for her to sit right up at the table with the other kids are turning out to be too hard for Eden to maintain, as well as not supportive enough for her to use her hands because she works too hard to try to stabilize herself. It's going to be a balancing act in more ways than one.

I have to give myself permission to let some things go. She is different. She's always going to be different. There are always going to be some things she just cannot do. And that's OKAY. A lot of things are worth fighting for, and I will fight when I need to.

But sometimes you just have to let it go.

Jinxed

Wouldn't it just figure that less than 72 hours after I post something with the word "healthy" in it, Holland wakes up with a fever. 102.7.

I am working on a post about how well they are eating lately. Maybe I should just ditch it.

Happy and Healthy

Perspective

It could be worse. This is a topic that has come up on my blog, as well as in various other forums that I am a part of, several times in the past three years. How does a micropreemie mom react when their acquaintances or even friends are complaining about their full term healthy kids? They're not walking at 14 months. They're not talking in sentences at 2. They're picky eaters. They won't sleep through the night. Moms of twins complain about how much work their two normally developing kids are. Pregnant moms complain about how uncomfortable they are at 36 weeks, and they wish this baby would "just come already."

How should moms of kids with more severe disabilities react when they are barraged with the worries of other preemie moms worrying that their baby might have CP, when they are already holding their head up at 6 months? Or stressing out to the point of their hair falling out over a language delay at 15 months?

It's all a matter of perspective. I admit to having lost the ability to relate and be empathetic in certain situations, and I am sure that I have snapped, or said something that I probably shouldn't have more than once. More than once I have been guilty of at least thinking "stop whining," or "get over it," or "what in the world do you have to complain about," or "FOR THE LOVE OF ALL THINGS HOLY, COUNT YOUR BLESSINGS AND STOP WASTING SO MUCH ENERGY ON SOMETHING SO INSIGNIFICANT!!!" Most of the time I am able to bite my tongue and remind myself that their feelings are valid for their life and their situation. And they are. It's NORMAL for people to worry about their kids, even the little things. Had I not been thrown into the life that I have now, I would most certainly been one of those moms. I can be forgiving.

At the same time, I feel that people in general should be considerate of their audience. I have an analogy that I think most women can relate to... You see, almost every woman has some complaint about their body. They think they are too fat, their nose is too big, their belly pooches out too much, their boobs are too small, their hips are too round, etc. etc. etc. The list goes on and on. But it would be rude and inconsiderate for a woman of average or below weight to show up at a support group for obesity, and complain about being fat. It may be very real and true to her. She may be miserable and unhappy about her weight or her body and it may affect her life to a great extent. But it is still rude and inconsiderate of the audience. How should the women in the group react? Should they try to be empathetic and supportive of the skinny woman's feelings? Or should they put her in her place, and give her some perspective?

I wouldn't join a support group for moms of kids with CP, then moan about my child not walking until they are 18 months old. They have children who will never walk. I wouldn't talk to a mom who lost a twin about how hard it is having two. She would do anything to be in my shoes. I wouldn't complain to a preemie mom about how miserable my third trimester has been, and how uncomfortable it is to be 8 months pregnant. Really, it will just make her want to stab you in the eye!

Blogs are an interesting thing. When you are writing on a blog, you don't have the ability to really know and choose your audience. I think, on your blog, you can moan and groan about anything you want. That's what it is for. Your audience chooses you, and most of the time they do so because you write about something they can relate to, at least on some level.

I moan about things on my blog that I just wouldn't in other places. I don't complain about Holland being hospitalized with every little cold to someone who's child has cancer. I try not to complain too much about the severity of Eden's CP with someone whose child has severe quadriplegia, or impaired cognitive ability, or is nonverbal. I wouldn't complain about Holland having to wear her patch, or glasses, with someone whose child is blind. And I try not to complain too much about what terrible eaters my kids are directly to someone whose child does not eat by mouth at all.

At the same time, I don't want to lose perspective to the point that my friends can't talk to me just like they would any other friend. There will just have to be some give and take, by myself and by the people I encounter who know my story. I will try to remember that your feelings and worries about your healthy full-term kids are valid and very real to you. But you should also be considerate of your audience and not go on and on about how your kid who is in the 95th percentile for weight is a picky eater! At least use a disclaimer, such as "I can't imagine what you are feeling, because I feel so incredibly worried about my 35 weeker spending 5 days in the NICU."

It could always be worse. I need to remember that too. I am so blessed in so many ways. Eden is learning to talk. She has good use of her hands. She seems to be pretty bright in terms of cognitive ability. Holland is falling less, and is starting to run a little more smoothly. She can do a somersault. They are both improving in their eating. They both interact so well, and are interested in so much, and are cheerful and friendly and very happy most of the time! I am so very lucky. But you know what, even if they could do none of these things, I would still be lucky. Someone else will always have it worse, and even they might still be lucky in so many other ways. It could always be worse. But maybe it could be better too. Our feelings are all valid and need to be shared. Let's all keep it in perspective.

Holland's turn to take a picture...

Now it's Eden's turn...

Notice the different personalities? LOL.

Back in '93

Today is the anniversary of our very first date as "boyfriend and girlfriend." It was the first time that we tentatively held hands, and had our first peck on the lips. Okay, so maybe it was more than a peck, but don't tell my mom and dad. I have an image to maintain!

Really, who woulda thought we'd end up here, 14 years later.

I wonder sometimes, when I am feeling down, if he had known then what he knows now would he have stuck it out? Or would he have run screaming the other way?

We have been through the ultimate test of our relationship over the past few years. It is understandable that many couples faced with these challenges do not make it. Our lives are so much different than they would have been otherwise, if we had had full term healthy babies.

In the end though, I think, even if he had known, he would have taken me on anyway. The bond we have is up to the challenge. We compliment each other, respect each other, and really like each other (most of the time). We connect on an emotional level, in a way that I can't imagine connecting with anyone else. We enjoy each other's company (most of the time), and after all these years, I just really like to talk to him. I think he likes to talk to me too. We laugh at each other's jokes, and act goofy with our kids.

When we have a moment to breath, take a step back, and look at the bigger picture, it's completely clear. We are insanely and completely in love with each other, with our girls, and with the quirky little family we have created.

After all, what's NOT to love???