Thursday, April 25, 2013


I ponder and agonize over the question of whether or not I would want another baby on a daily basis. Within a single day I am likely to think, "Absolutely not! How would we ever manage it? It's all too risky!" and then, "But I just want to! Lu would LOVE to have a sibling!" Chad, on the other hand is not so torn and likes things the way they are. One night, as I was talking about this subject he said, "Will you ever have enough things to take care of?!" I said I probably won't. I just love taking care of things! Plants, animals, humans...I love them all!

The insurance finally approved the testing that needs to be done to see if I am a carrier of Rett Syndrome. There is a less than one percent chance that I am. Within the rest of the 99% of causes for Rett Syndrome, there is a 1-2% chance that just some of my eggs have the mutation or just some of Chad's sperm do. Obviously, that cannot be accurately tested, so it is always a question mark. The rest of that 99% of the cause for Rett Syndrome (and other similar genetic mutations) was just a fluke. It just happened. The chances are very small that it would just happen again, but it could. There could be a fluke that causes a completely different condition, and this is a possibility in every pregnancy for every person. Reproduction is just very risky business.

Last night I finally (hopefully) came to a conclusion. What I realized is that like Chad, I also like things just the way they are. I like being able to give my full attention to Lu and do everything I can to help her succeed, and I don't think I want it to be any different. Besides her dad, she is literally the most awesome person in the world, and I just love to be with her. However, I spend so much time each day just caring for her, feeding her, giving her bottles, etc., that I worry a second child would not get enough attention. What I think I am having trouble getting over is that if things were different, we would likely have made a sibling for Lu already. We love being parents, and regardless of Chad's predictable apprehension of all big changes, he probably would've trusted me that it would be okay to have two children. But, as it stands, I think it will just stay the three of us.

Someone asked me the other day if our hesitation is because we would be sad to have another child with a disability, if the unlikely happened and a second child also had Rett or something else. The answer is no. The reason is that I would feel guilty for all of eternity that I brought another human into this world that will have to live as challenging a life as Lucy does. Many people take the risk, even after having a child with a disability, but we just don't feel it is something we are willing to do.

I like to use analogies sometimes, so here is one about how I feel about procreation in general:
Let's pretend you are in a grocery store and you see someone you think that you know and trust. You wave, start over toward them as they wave back and smile, and then just as you reach them and are preparing to say hello, they punch you right in the face. That's how I feel about pregnancy and reproduction. My pregnancy went relatively fine. Labor was a little difficult and ended in an emergency C-section, but then Lu was here and she was healthy and happy and we said, "Whew! Everything is fine." Fast forward a year and pow right in the kisser! Nothing was actually "fine" and we didn't even know it. Below are two of my favorite pictures from the hospital. I love them and have them in frames, but every single time I look at them it makes me remember how we were deceived by putting our trust in the idea that reproduction will always run smoothly.

I really would love to have another baby, but I just can't trust the process anymore. I don't trust it and even though I am having a lot of trouble getting over how much I'd love to make a sibling for Lu, it is about a zillion times harder for me to ever feel like I could trust something that betrayed us so sneakily already.

Monday, April 22, 2013

Lu Takes a Stand

As I have mentioned, Chad is Lucy's favorite walking coach. He really pushes her just a little bit past her comfort level and I think that is why she does so well with him. Her pt, Mari, works the same way with her, and Mari is her second favorite walking coach, but Daddy is number one just because he's her Daddy. I don't push her like they do, and I probably am a little too cautious and worry a little too much, so Chad has really taken on the role of "pt" at home and Lucy just loves it.  She does all kinds of things for him with a huge, beaming smile on her face because she knows how much he [we] believe in her. They are an amazing team, and as I have finally figured out how to post a video in a post, below is a little video of Lucy standing up...without any help. This is a brand new thing that Lucy and her Dad have been working on just in the past few days. She has never, ever been able to stand up from sitting on her own. It's only been in the past few months that she has been able to stand up from sitting with our assistance, let alone all by herself! It's a super big deal around here!

Wednesday, April 17, 2013

It's just too damn much sometimes

Lucy has been throwing up since last night at 12:30. Lasagna all through her hair. She couldn't keep anything down and Chad and I were terrified that she would throw up more and aspirate, or that she already had when she threw up the first time. Aspiration is very common in girls with Rett and can easily lead to pneumonia. We thought she was getting better throughout the day, and then she started throwing up again. We will go to the doctor's tomorrow.

A woman just posted in the PA International Rett Syndrome group on Facebook that her 31 year old daughter with Rett Syndrome died on April 8th. She died in her mother's arms with family all around her.

Then I switched over to the Newsfeed on FB and the first thing I read is that a little girl who is almost five (and has Rett) was admitted to the hospital for being in respiratory distress after coming out of a seizure. She was admitted to a hospital in Orlando Florida...because they were just finishing up their Make-A-Wish trip to Disney.

Last month, four girls between the ages of 3 and 21 with Rett Syndrome died of complications from the condition. I'm sure more girls than that passed away in the world last month, those are just the ones in the Rett Community that I am familiar with.

I certainly acknowledge that there are a zillion bad things happening in the world every day. I often say, "Bad things happen everywhere." No one is safe. I care a lot about all of the bad in the world, and I wish I could fix it all. But the thing is, nothing is as important to me as the beautiful child that laid in my lap all day just wanting to be held. And I can't "fix" her. I cant make Rett Syndrome go away. With Rett, little things such as a cold can become extremely serious in the blink of an eye, so Chad and I worry about EVERYTHING. But, unfortunately, even if you worry about everything and do all of the right things, Rett can still win. Just ask all of the families I mentioned above.

Chad and I are exhausted from worrying that Lucy is going to become dehydrated or that maybe she has a glob of lasagna stuck in her lungs that and it is going to become infected. And then I have to read these sad stories of other families suffering from this wretched monster and who have lost the war. They weren't stories that I wanted to hear at the end of this long day, but they are stories that I insist on hearing. We have to know what we are up against.

Tuesday, April 16, 2013

Princess Underpants

A little friend of Lucy's at Kindermusik wears underwear all the time now! She just turned three. On Friday after Kindermusik, Lu and I were talking about her friend's accomplishment and I asked her if she wanted to wear big girl undies too and she nodded yes. Lu already poops in the potty a lot if the time, we just haven't started trying to nail down the peeing yet, but I guess she's ready!

Lucy got a new potty chair for the new house that is also a shower chair and she is able to sit on it by herself and not fall off, so she is trying to get used to it. Yesterday, Lucille wore her big girl underpants for almost 20 minutes and did not pee in them at all! We have been taking an informal survey of friends and family as to whether or not they pee in their undies, so Lu knows that underwear are not for peeing in. Luckily, everyone so far has answered, no that they in fact do not pee in their panties. And so when I put Lu's little training pants on I just reminded her that we don't pee in panties, and I reminded her occasionally while she had them on, and she didn't. Now I realize that it was only one time so far and for a short period of time, but I am so proud of her and impressed with her! She just wants to be a big girl and so that's what she's going to be!

Monday, April 1, 2013

A big step

At the risk of being a total bummer, I am going to talk about two things Lu has said in the past few days. Sunday, after coming home from my Aunt Mary Jo's house for a hectic and fun Easter dinner, I asked Lucy if she had fun playing with her cousins. She said no. I asked her if she wanted to tell me why she didn't have fun and she said yes, and then with her PODD said, "I don't like this, makes me mad, sad, help, don't, walk". I asked her if it made her mad and sad that she couldn't walk like the other kids and she said "yes".

Monday morning Lu was having a rough time since she woke up at 3:30am and had not been able to fall back asleep. As I was trying to get her in her seat for breakfast she was crying (with tears) and really doing a lot of yelling. I asked if she had something to say and she said yes, and then said, "I don't like this, noisy, sad, me".

So, I not only have to think all of these sad things in my head and do my best to not let on to Lu that I feel sad sometimes, but now she is just saying them "out loud" and I am given the challenge of addressing her feelings and not falling apart into a puddle of sobbing goo. I read an article when Lu was first born about raising emotionally healthy children. The main thing I have always remembered from that article is that even if the emotion your child is experiencing is "unpleasant" or not really convenient for what is going on at the time, it is still their feeling. Everyone feels mad and sad, and jealous, and frustrated and all kinds of things all of the time and it is our prerogative to have those feelings. And so it is too with children. Not only do I feel it is their prerogative, but it should be expected that they would have much less control over their feelings than an adult; they have been alive for a much shorter time! And instead of trying to shoo those inconvenient and/or unpleasant feelings away, it is important to acknowledge that child's feeling and let them feel it. Don't mock them. Don't get frustrated. Don't try to gloss over what might be making them feel sad by pretending it isn't real or it's better than it really is.

So, I think it is very important to acknowledge Lu's feelings of sadness and frustration with the limitations Rett Syndrome imposes on her...even if it might be the most heartbreaking thing I have ever experienced. She has made it very clear that walking is something very important to her and we work on it daily. Her favorite walking coach is her Daddy and she does amazingly with him. She has started to be able to take some steps just holding onto his hands. This is HUGE! A year ago she could barely stand up.

And as for her comment about being noisy and sad, it is amazing (and devastating) to me that at such a young age she already realizes when she is doing something "different". She has really started yelling a lot lately, and it is not so much intentional as it is just something her body is doing, like her rocking and hand movements. But she is acutely aware of it and because of the PODD, was able to tell me it makes her sad. Bittersweet I guess. I want to know everything she thinks and feels, but it is so hard to know when she is hurting.