Rett Families

Today, we spent the day with two awesome Rett mama friends and their girls (I didn't get pictures with Alice who was at school for most of that morning). We had a wonderful time!

Spending time with my fellow mamas is so incredibly therapeutic for me. I cherish these friendships. My heart grows bigger when I'm around their girls. We are bonded by incredibly unique circumstances. I am grateful that we found one another.

As I've said before, we don't walk alone.

Getting back on track

I've been reflecting on why I was having a harder time coping lately. I realized I needed to acknowledge and come to terms with a couple of things.

I hate seeing Caroline struggle but I don't want to change who she is.

Caroline is trapped in a body that won't respond to her brain. The reality of apraxia is so senseless to me. Caroline is unable to walk or stand without assistance. Putting one foot in front of the other is an an incredibly challenging and almost impossible task for her. Caroline has lost the ability to say words and use her hands. Her only communication tool is eye gaze. She is essentially silenced. I worry about the emotional impact of Rett Syndrome on Caroline. I worry about it every single day.

But I am not sad that I have a child with special needs. The thought of diapering, bathing, and feeding her when she's 25 does not faze me at all. I also embrace our "different" milestones. There are plenty of wonderful people who will celebrate them with us! Being Caroline's mother is the biggest source of pride in my life. Some may wonder how I can express the feelings in the above paragraph and still feel lucky. I'm not sure how to explain myself except to say that I see Caroline for the unique and awesome person she is. I don't feel that I'm missing out. How could I? This is my world and there really is no point in drawing comparisons of any kind. I do, however, feel increasingly uncomfortable with assumptions that there is a reason for me to feel bad around typical children. At this point, I feel that those who think that way don't understand or appreciate Caroline.

Circumstances have changed and I've changed.

The main change I've experienced is my impatience with unsolicited and unkind remarks, especially around Caroline or my parenting. I used to be able to let things roll off my back, but our situation has forced me to be more protective. I'm much more willing (and unafraid) to set boundaries.

Those who know me well know that I've always had a tendency towards being polite, quiet, and conflict-averse. I would compromise my feelings or put myself last in order to avoid "rocking any boats." Unfortunately, those traits send the wrong message. They are regarded as the equivalent of being a pushover or lacking intelligence. There is no room for being passive when you have a child with special needs. Nothing comes easy. We have to constantly speak out or fight to ensure that our children's basic needs are met. Having a child with a disability forces you out of your comfort zone. Ready or not, parents are turned into advocates overnight.

I recognize now that I was having a tough time reconciling the "old me" with the "new me."

I want to take this opportunity to express my gratitude for all the kind words of support I received after sharing my feelings a few weeks back. They meant so much and helped me a lot.

For now, I'm dusting myself off and moving forward again.

Sesame Street Surprise!

Caroline REALLY loves her Sesame Street DVDs and CDs right now. Her favorite character seems to be the Count though she also likes Bert, Ernie, and Big Bird. The Batty Bat song always makes her smile. The Silly Songs DVD is her favorite. We often watch her when she's enjoying her videos. She always vocalizes or laughs during the same scenes! Mike and I can't help but smile at each other. I love those moments. 

The DVDs and CDs mainly have the "old school" stuff Mike and I grew up with. We can actually listen to the same songs over and over again without getting tired of them. I don't mind getting "C is for Cookie" or "I love trash" stuck in my head for days. I'll just say that this is not the case for some of Caroline's other CDs! 

We decided to spoil Caroline and bit and got her bunch of Sesame Street toys and puppets. We saved a few of the toys for later so that we can surprise her again in a couple of months!


Below are pictures of us surprising Caroline with her favorite Sesame Street friends. 

Caroline's "independent" time

Caroline needs assistance with every aspect of her life, from eating to petting our dog Kroeber. But there are a couple of activities that she is able to enjoy independently. She loves watching her Sesame Street DVDs. She also LOVES to rock her body (and do sit ups) while listening to her music and staring at the pictures on the wall.

The particular combination of moving to her music and "studying" the pictures brings her much delight. We think this activity fills her need to feel independent. I'm sure she gets the sensory input she seeks as well. We are really curious about her fascination with framed pictures these last few months. I wish Caroline could tell me in her own words what she loves so much about them. We find it interesting that she does not react with the same level of enthusiasm when the pictures are organized in photo albums.

Caroline is incredibly social and is very attached to those she loves, but she makes it clear to us that she does not want to be held all day. I wonder if she notices that she needs more help than her friends. I wonder if she's starting to realize just how much she has to rely on us for everything. My hope is that she always feels secure, loved, and intellectually stimulated.

Pictures of Caroline having some "independent" time

Tightness

Caroline's muscles are incredibly tight. The tightness is the result of her limited internal rotation due to her inability to walk or stand. She can sit with her legs stretched forward for the longest time, but she can barely get into a kneeling position without screaming in pain.

Her wonderful physical therapist showed me how to stretch her sides, the back of her legs, and her back. In addition to the daily stretching (which she absolutely hates),we also massage her. She seems to enjoy the latter.

I showed my mom how to massage Caroline 

Water Girl

Caroline LOVES being in the water.

Bath time is one of the highlights of her day. She was happy and calm during her very first bath. And she's still the same way today. She's never cried or complained, even when water pours down her face.

Caroline really enjoyed her swimming lessons last summer. Unfortunately, we are skipping lessons this year because of her constant spitting up/vomiting.

On Sunday, we took her to an interactive water fountain nearby. She had a blast! At first, we just let her observe. She smiled and giggled as she watched the kids play before joining in the fun too.

Videos and pictures of Caroline enjoying the interactive fountain

Hitting a rough patch

Caroline has been experiencing some set backs lately.
I'm having a really hard time coping.

Caroline seems weaker, despite all efforts with physical therapy. Her ability to bear weight on her legs and take a couple of assisted steps has decreased a bit. She shakes more than she used to. Her reflux seems to be getting worse too. She's spitting up (sometimes vomiting) up to 10 times a day. We're trying different things: eliminating certain foods; feeding her even smaller portions; and keeping her still after meals. The constant vomiting is stressful. But the most difficult part (for me) is Caroline's increasing awareness of her limitations. She's getting more and more frustrated because of her inability to communicate what she wants and what she's thinking. She often looks at us with an anguished or confused look as if to say "why aren't you understanding me?" A few times, she's become distant and quiet...like she's given up because she sees no point to keep trying. My biggest fear is that her personality will eventually change because of her impairments. I know I will not be able to handle losing who she is.

The truth is that I've been struggling to remain positive these days. Right now, I'm feeling pretty helpless and exhausted. I hesitate sharing these feelings because I don't want to be misinterpreted as wishing Caroline wasn't "Caroline." I don't want to elicit pity. I don't want to make people feel uncomfortable around me. I don't want to scare people away. I feel that I'm expected to be okay with all of this by now. It feels wrong to burden my family and friends with my sorrow at this point. I don't want to disappoint or drag anybody down with me.

I'm coming to terms with the fact that there will be many more bumps down the road. I won't always smile and be the person I want to be. I'm human. I'm a mother. I'm sensitive. Sorrow is nuanced and complicated.  And I know I'll be better again soon.

Mike is my rock. He's always pushed me to be authentic and comfortable with my more "negative" feelings. It's interesting how we both seem to take turns feeling not so great. I'm glad it works out that way.

Caroline continues to make me smile.

Here's a happy moment from last week. Caroline is trying to kiss me back. 

Every Friday, Mike and I use a couple of hours of respite care to go to dinner together. I treasure those times.