Two years ago...

While looking for a picture to add to my newest Mothering article, I happened upon these pictures below. They are from when Lu was about a year old. This was back when she could hold her cup, eat a Mum Mum with her hands, and sit criss-cross applesauce. She has lost these skills and it is hard to remember the time when she had them.

We are about to celebrate Lu's third birthday in a few days and I am super excited for it, so I apologize for writing this downer of a post. There are just some things that I can't not share, even if they are sad. This is the reality of Rett Syndrome. But...another reality of Rett Syndrome is the joy Chad and I glean from each and every tiny accomplishment of Lucy's. Yesterday she said with her PODD, "Let's go, visit, my, new, bedroom". Today I helped her walk from the living room all the way to the car and back again when we returned home from our errands. Sometimes a word pops right out of her mouth, clear as a bell, usually "yeah", "Da", "Mo(m)".

"You take the good, you take the bad, you take them both, and there you have the facts of life..."

Transitions

In 7 days Lu will be THREE YEARS OLD! I can't believe three years have come and gone already and she's like, a "kid", not a baby anymore, but a kid! Besides it just being exciting that another birthday is almost here, I have been spending the past few months preparing for Lucy's transition from the current services she receives through the Early Intervention program which serves children from birth to three years old. And so now, we are getting ready for preschool and all new therapists. 

My cousin, Danielle, has been Lu's speech therapist since she was one year old. She has been with us through every step of the process of figuring out how to help Lu communicate with us from the beginning with picture cards to learning the PODD and now trying to help us get the Tobii.  But in a week, we won't have her as a therapist anymore! Just like that. She has been integral to getting us to where we are and we are so thankful for all that she has done for us and for Lu. Luckily, we will still see her all of the time since she is family, but  just not three times a week here at our house for speech.

We have had a rocky road with physical therapists, but we finally got Mari last September and she is a pt genius, but now we have to "transition" to someone new. Again luckily, we plan on still seeing Mari in outpatient at Easter Seals when we need extra pt. We were literally just sitting here needing "stuff" Before Mari came along. Lu needed equipment and someone that knew how to get it and use it and adjust it and Mari just swooped in and took care of it all. And she is great with Lucy!

The new therapists I have met are also wonderful! I am super excited for them also, it's just the change. We have spent the last year having between 7 and 9 therapy sessions a week, so I am kind of looking forward to less so I have more time to do fun stuff with Lu; I'm really excited for that. In the past months I have met all of the new therapists and they have come and done assessments on Lu to help create her very first IEP (Individualized Education Plan). We have spent two different days working with the transition coordinator to complete a standardized test which is used just for service qualification purposes. Guess who scored right at her age-level in the cognitive section...you guessed it, Lu did. We spent several other days with the new OT and Pt and we spent three days with the new speech therapist while she completed a communication assessment, which Lu scored at her age-level in the receptive language section. What those scores mean is that intellectually (cognitively) Lu is just like any other three year old, and she understands what people are saying, just like her peers without cognitive delays. 

Understanding Rett Syndrome and how it effects Lucy and how her treatment should be approached can be quite a mind-shift for people. The combination of symptoms can be overwhelming I think when you don't know her and understand her. I read over the IEP draft this weekend because we have her very first IEP meeting today, and I realized that it will likely take a little time for all of these new people to understand really and truly what life is like for Lu and what we need to do to help her. For example: her hands are not ever going to improve. Over the past year she has lost some more functioning in them and her hand movements have changed several times, but they won't regain any functioning; it's just not how Rett Syndrome works. I worry that new people will view Chad and I as nay-sayers or as being negative when we try to explain this, but Dr. Sasha told us this as a fact the first time we met her. Lucy needs to learn to do things in spite of her hands, with adaptations, but not try to make her hands get "better"...they just won't. That's just one example of something people have trouble accepting I think. 

And at preschool they eat lunch! It terrifies me to have anyone but me, Chad, or my mom feeding Lucy. She could easily choke. She chokes when I'm feeding her and I do it 3-4 timesaver day, every single day! Last night I began to panic and only half-jokingly asked Chad if he thought we should cancel the IEP meeting, then I started to cry. As is the case with most things we have been faced with in this journey, it's just not about how Chad and I feel, it's about Lu being able to have some independence, and make friends, and experience new things. She is so smart, and brave, and strong and deserves to go and do this, I just can't stand that it will be without me! 

We have to share Lu with the world, and share the world with her.

All that matters

It doesn't matter where we live, what we wear, or what we have. It doesn't especially matter what we look like, how thin or fat we are, or how "cool" we are. It does not matter what toys Lu does or does not have, or where we ever go or don't go in this world. All that matters is what you see in this picture. All Lu needs to know is that she is safe and we love her and will always take care of her. Her favorite place at this point in her life is in our laps, just snuggling and being together. All that matters is that we always make sure she knows how much we love her and believe in her.

She's walkin', yes indeed

We are borrowing a walker, also known as a gait trainer, called a Kid Walk.  We have tried 3-4 different walkers and none have been right for Lu, until the Kid Walk! And then Lucy's smarty pants PT rigged up a little pully and rope to make it so she must alternate her feet and get her toes down onto the floor, which is what needs to happen to propel the walker forward. It's super exciting and here is a little clip of Lucy's success!

Procreation

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.

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!

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.