Tonight as I tucked Claire into bed, I noticed she had something important on her mind that she wanted to share. Her Tobii communication device was downstairs charging for the next day, so at this moment, it was just us two, no communication devices, no technology. Just us. Claire was staring at her three favorite stuffed animals. She wasn’t lying down, but rather upright, looking at them, and making “mmm” sounds. I knew from that moment we needed to chat!
So I got into bed with them all, and said “What’s going on with your friends?” She looks at me, and smiles. (This is her telling me she feels understood) So I get comfy. I tell her, “Okay! You need to tell me what you guys are talking about… fill me in!” Again, she looks at me and smiles.
There are many moments like these where she looks right in my eyes, for a long moment. Sometimes for a few seconds, sometimes up to a minute. This is when I make sure to be quiet and listen. I smile back. In between the looks, I tell her “Claire, you really have a lot to say right now.” She smiles back. Again, feeling understood. And I continue: “I know, Claire. I totally agree with what you are saying. Tell me more. Yes! I know.” And she smiles yet again, looking me deeper in the eyes.
At that moment, I felt so incredible close to her. We were inches apart, and we were connecting. And it was the best moment ever. And yet, here we were, only inches apart, and as I looked into her eyes, deep down, I felt so far away. What I’d give to truly know what she was thinking during this moment when she was staring me in the eyes with that look on her face, which said “Mom… do you know what I mean? I want to tell you so much. Please tell me you understand.”
Awee, Rett. How much I dislike you. Seriously, why?! I just want to hear my baby’s voice. Please, one day?? But recently, her health? Come on. I knew from the beginning how all x, y, and z were possible with Rett. But now, darn it… they are coming true. No! I’m not ready yet. Prayers are welcome in these upcoming next two weeks. My stress level is honestly through the roof at the moment. As I mentioned in my previous post, Claire’s health has been poor this winter. Now, we are facing the possibility that she’s aspirating on food and liquids, which means instead of her food and liquids going to her stomach, they are going to her lungs, causing her to choke/ cough and consistently vomit among other issues. On Tuesday, she will have her 4th swallow study done. We are also suspecting GERD among other GI issues, and she’ll be seen next week for that. I don’t even want to get into what this could mean if she truly is aspirating because honestly I’m not there yet to think along the lines of her being fed through a tube. But, I’m not going to lie… when the pediatrician called me on Friday and asked me if I truly understood everything that was going on and what this could mean (which I do understand), it became more real. It’s just weird hearing it from someone else. No!
We will do whatever we need to do for Claire, for her safety and health. Prayers please though, for a good outcome with these upcoming doctors appointments. She also needs to see pulmonary for possible reactive airway disorder. And should we get back to the sleep specialist for possible sleep apnea, or obstruction of the airway when sleeping? (am I even saying these medical things correctly?) Yes… all of these things are now on the radar. Not uncommon with Rett. But new to us to some degree.
The focus of the next two weeks are not only on Claire’s current medical issues, but it’s also on Claire’s school program. We have a couple meetings with the person in charge of the school program, along with the entire team of teachers and therapists at school this week and next. I haven’t said much on the topic of her school year thus far, nor will I, in this format. However, now that we almost have a year under our belt with the program, I understand a lot more than I did in the beginning and I’m comfortable in determining if this is the right fit. There are current challenges and gaps that need to be figured out and closed at the moment. I’m hoping we can come up with a great solution in the next couple of weeks together, so that next year will be smoother on both ends.
Finally, on Thursday this week, we have a meeting with our case manager to discuss Claire’s updated health and progress (or lack thereof), among other topics. This meeting should be fine… there’s just a lot of prep work this time around in particular.
All of this “Claire health/school/case manager stuff” is in addition to regularly attending her therapies, trying to bring them in the home for consistency sake, keeping up with the kids’ school stuff, the boys’ homework, their sports practices and games, the kids’ playdates, and our normal ‘life’ with family and friends. We are constantly on the go, go and go… and things need to slow down, down and down. But right now, it can’t. So yes…
Prayers for a good health report, successful outcome on the school front, smooth meetings with the case manager/ insurances, and peace among the homefront so my kids don’t sense the stress level or miss a homework assignment because my mind is so far away at the moment, would be much appreciated. 🙂
On a side note? (and yes, totally random point) My boys love when I volunteer at their school as a library or computer helper. They are so darn cute when I’m there and they are so happy to tell their friends “that’s my mom!” I know this won’t last forever. So on Tuesday, before Claire’s swallow study, I’ll be Brendan’s “computer mom helper” and he already told me how happy he was about this. Hearing this is priceless. Being there is even better!
You know… so close but so far away? Some moments you may feel like you have a good handle on things… you are in control and things are manageable. Other times, you may feel the total opposite. And… in a blink of an eye, these moments can be interchangeable. That’s just the way it goes.
So, although I’m still searching on how to process and “do”, especially during these busier times, I’ve also just learned to go with it and ride the ride. (And send extra thanks to those people who are patient with me when my getting back to you response time may be a little longer than what it used to be… or if I just completely forget… so sorry!) 😦
God has a plan for all of us, this I mentioned before. But does that mean we can’t ask for extra prayers at the times where stress may be a bit heavier and we are hoping for good test results or IEP answers, among just keeping the “norm” on the home front? I don’t think so. 🙂
Dear Jesus, This moment I lift Colleen, Claire, Brendan, Nolan and Sean up in prayer. Envelop them in Your grace and healing Presence. When all is too much for us, Lord, You can give us the strength to face what is ahead. May Your healing power protect Claire as she goes through her upcoming testing. If it is Your Will, may her test results be positive. Within all of this earthly turmoil, May Your Eternal Presence give the Reilly’s moments of peace and clarity where wisdom, discernment and love are felt. In all glory, laud and honor, we pray. Amen
You have shed light on an issue that is so unnoticed, a disease so unknown. Your fortitude and courage are unmeasurable. Your willingness to keep moving forward is admirable. Thank you for this story. You will most certainly be in my continued prayers. I would love to be able to help you fight this, and if there is any way I am able to be an active part of Claire’s Crusade, please let me know. Colleen, I would love the chance to finally meet you, and Claire, the child for whom you are fighting so hard!!
Thanks for sharing and taking some of your precious time to do so, Coll. You all are on our constant prayer line, especially since we don’t know what else to do. I was touched when you were able to describe your eye-full moments with Claire…almost like you were soul-to-soul. Even through all your difficult moments and decisions, your strength and faith still carry you through (which I find amazing, but is a lesson to me/us to never lose hope). God is with you/us…
Love and prayers…GMM
Sent from my iPad
you know you always have our prayers from across the cul de sac…we think about you guys all the time. i want to tell you that i’m so happy you are volunteering with the boys school when they are young…if you try and do a little something in their school every year they won’t think it’s “stupid” when their mom is still coming around when they are in 7th and 8th grades — it’ll just be normal to them. I treasure all the hours of volunteering I did at st. Anthony’s with my kids, it gives you a different perspective on them and a little peek into their world when they are away from you. hope to see the boys playing catch outside soon! Carol
I respect and admire you all and can’t help notice how beautiful Claire is in this photograph as well well as the in the picture I have of you and her hanging out with her communicating Mom to daughter….it’s truly a beautiful vision. Jim and i will continue to think about you, pray for you and contribute to Claire’s Crusade. Thoughts and prayers. Jeanne and Jim Nally
God Bless all of you and keep you in the palm of His hands