Sounds, often smells and certain times of the year are memory triggers for me. This time of the year, mid to end of June sometimes is a difficult one. Everything about it from the way the morning sounds as I sit outside and have a cup of coffee before the kids wake up, to the smell of the air in general throughout the day, to the way the days get longer and the sun sets later each night… all of it, brings me back like it was yesterday, to a life changing moment that occurred seven years ago on June 22nd with one phonecall.
Seven years ago, we entered into a new world… one that would forever change me as a person. We heard the confirmed words of “Claire has Rett Syndrome” and had no idea what it was and what the future meant for our little girl who was 14 months old at the time.
When Claire was first diagnosed, someone once told me that things would get easier through time. I questioned everything they said, not understanding at all how this could be possible because the life I thought my daughter would live had completely changed to a life that would be extremely difficult not only for her, but for my boys, my husband and myself.
I went into a dark place. I couldn’t concentrate. I didn’t sleep. If I did sleep, I woke up with nightmares. I went through a period where I zoned out and found it tough to keep up with the outside world. I was angry. As a mother, I felt a deep sadness in my heart that I never knew could possibly exist. I couldn’t, in the slightest, comprehend all that was about to take place with Claire and what was in store for her future. My memory shut down and there is a lot during that first year post diagnosis that I don’t honestly remember. I was no longer the happy go lucky girl/ woman I naturally once was and it was tough to adapt to this new me. I was 30 years old at the time, and many days, I wasn’t sure how I was going to make it another 30 days… getting through one day was hard enough. I was beyond devastated as I looked into my little girl’s eyes, knowing more about what was in store for her life than she did at the time… and I remember wondering how in the world I was going to help her every step of the way as she lost more skills over the years to come. I remember wondering how this would affect my boys who were ages three and five at the time, in the years to come. How would this affect Sean and me? None of it was going to be easy.
This diagnosis was out of my control… many things in life are. It was just a lot to take in – all of it – and it all happened so suddenly and out of the blue after a completely normal and healthy pregnancy and first year of life. So – all this being said… how could things possibly get better – or easier? The person who told me they would, I wondered… how did they get to that point, and would I ever feel the same?
It’s been seven years. And this morning I told Sean, “Happy Anniversary.” He looked at me like I was crazy (not out of the norm, haha) and with a smile on his face, he said, “Not so sure it’s a happy anniversary.” But I told him yes… it was this time. Because my gosh – look at what we’ve been through, and look at what we’ve gotten through together. It hasn’t been easy, true. But it really has gotten easier in many ways and it’s important to focus on this.
With every setback or difficult situation especially relating to Claire, I’ve naturally become more and more resilient towards “life.” My skin grew thicker. My perspective and priorities changed. I’ve learned by default to not freak out about the little things I used to think were a big deal, because they were so not. I learned where my energy needed to reside… and where it didn’t. I learned a lot about others. I learned a lot about myself.
A few weeks ago, Claire got her wheelchair modified because she had outgrown her old seat, leg and arm rests, etc. It took months to get to this point with the paperwork, measurements, quotes, denials and finally approvals before the actual changes could be made. We worked with her great school PT and company who helped make this process a lot easier than it had been in the past, and I was so very happy when the day finally came where they were able to rebuild what needed to be done for a while.
They were going to work on Claire’s chair during her school day originally, but Claire ended up being out sick the entire week. So instead of cancelling her appointment because she wasn’t able to get to school, both her school PT and the company came to our home to work on it. The man from the company who made the changes did so from 9am – 6pm and only stopped for a few minutes when he took a lunch break. Meanwhile, Claire had a fever, required constant suctioning and nebulizer/ the VEST treatments and she literally needed nonstop hands-on care the entire day. She wasn’t in great shape, and it stunk that she was missing the last days of school because those were the extra fun ones! Yet, as I sat next to her, I remember having one of those moments where I felt a “win.”
Because despite the current situation of her not feeling well, I was happy because I knew her chair would be way more comfortable for her to sit in, and it would also give her more support. In this moment, I also realized how far I’ve come over the years with the way I processed information. Because I can still picture the day where I took Claire to get fitted for her very first wheelchair when she was a toddler. That day was not an easy one to say the least. But here we are years later, and instead of being sad that Claire’s in a wheelchair, I was genuinely celebrating the fact that the day had come where she was finally getting the wheelchair modifications she needed and it would make her body feel a lot better.
Time heals a lot. And it gives you the opportunity to grow and learn about yourself – about what tools you need to help you get through the harder times – so that when additional setbacks occur, you are more groomed to handle the blows more gracefully. With time, you gain experience, wisdom and grit. You learn what works well when advocating, and what doesn’t. You learn how to better organize medical information and prepare for big meetings. You learn who you want on your team caring for your child, and who you don’t. You learn what you have control over, and what you don’t. You learn what battles to pursue and which ones to let go.
Time has given me the chance to learn my true inner strength. It’s amazing how God gives you the grace to get through situations you never realized you had the ability to get through. I’d be lost if I didn’t have my faith and for that, I’m grateful because although growing up my faith was always strong, it’s nothing compared to what it is like today. Claire recently made her 1stcommunion and it was the happiest we ever saw her… she was all smiles from the moment she woke up to when she went to bed. She worked hard to prepare for this day and we were blessed to have an incredible PSR teacher who connected with Claire so well and taught her many things. She continues to work with her now. Faith has helped me overcome many obstacles so far in my life, and it is so important for me to try and give all three of my kids as many opportunities as I can to help them grow in their faith. The leaders of our church were very supportive in working with me to help give Claire the opportunity to make this sacrament.
Seven years later, setbacks still occur and those times of darkness are definitely still there, testing me every step of the way, believe me. In March, Claire was hospitalized for a week due to what was possibly a bone infection of the hip. The pathology reports confirmed dead bone in her left hip, which explained why she was experiencing a lot of pain. This condition may improve over the years (we are hoping) but we aren’t sure. Our goal every day is to help treat and try to minimize her pain… some days are better than others. But for now, we know she’ll have chronic pain in this area because there is no blood flow to this bone and it’s essentially dying. (The fact Claire is young though is a good thing because hopefully the cells will regenerate and things will recover.)
I remember being in the hospital, wondering what this now meant for her everyday care and routine. I needed to completely start over. Because with Rett, it’s best to keep her upright and standing/ walking as much as possible. It helps with her tight muscles, chronic constipation, growth and strength in bones. Prior to the hospital, she’d be in her stander 2-3x a day for up to 45 minutes each time. And she’d walk laps around the gym or home. She had no problem bearing weight which helped us with transfers. We had our routine and schedule. However, now all of a sudden, things have suddenly changed… again. Upon leaving the hospital, Claire could only stand on one leg for up to four minutes before crying. Rest was best for her hip. So how do we address what she needs from a Rett perspective while addressing what she needs now? How much is too much and how do I help now manage her care? When she came home, every little transfer hurt her. She cried a lot the first few weeks post hospital visit, in pain. In the hospital, we were followed by the orthopedic team and the infectious disease team. I heard the words “this is rare for a child.” And I laughed (and cried). I had flashbacks to the exact words I heard from Claire’s neurologist when she said we have to test for Rett but that it was rare – however we needed to rule it out. How much can a little girl endure? Yet she still manages to smile through the tears.
Claire’s new diagnosis with her hip has nothing to do with Rett. I reached out to the Rett community and her Rett specialist in New York, and nobody else ever had this issue. Claire is one in a million, I’m telling you!
Oh, but this girl… She continues to be our angel. Our sunshine. She brings us so much joy and teaches us the definition of perseverance and grace among so many other things. She’s eight years old now… still super sweet and happy (when feeling well). Still loving her music and her activities. She’s so funny. Like REALLY funny and she knows it. The more you get her going, the more she’ll ham it up. She knows what she wants and likes. She has no problem telling you her opinion on things especially if she doesn’t like something. She recently wrote a newsletter with her eye gaze device that I’ll share soon so you can get a better idea as to what she’s into these days.
Our newest hurdle as of this past week, which hopefully won’t turn into anything, is the question that came from Claire’s eye doctor, who wonders if Claire had a stroke at some point over the past year which is when she had her last exam prior to last week’s. He has a few reasons for thinking this, but the biggest one is that she’s no longer tracking to the left in ways like she did before.
Yesterday, we had a follow up with Claire’s neurologist (the one who diagnosed her) and she thoroughly examined Claire. She’d like Claire to get a MRI because there are other signs regarding Claire’s left side of her body that has changed over time. (And not changes that align with Rett Syndrome) If it was a stroke, everything would have happened at once. However, with Claire, these changes to her left side have been gradually happening. The reason for the MRI is to rule out any findings on the brain that would be progressive, such as a tumor or something else because if there is something, there could then possibly be a treatment for it and we’d know what the plan of action is going forward. If it’s nothing, we know this too. Either way, more to come.
Overall though, Claire’s “Rett stuff” continues on and things are going well. I still take her to her weekly physical, occupational and speech therapies. These services also happen one time a week in school, in addition to her receiving vision therapy due to her cortical vision impairment. She’s in a great place at school and has a strong team supporting her. She received a feeding tube two years ago. She still gets botox in her legs and now she’s also getting it in her upper extremities on the one side due to tightness. We’ve been seeing her pulmonologist more frequently to address respiratory topics. She continues to get her regular EKGs. Her GI and I still work together to address her acid reflux and constipation issues, along with her g-tube button. GI, nutrition and I work together to address her food and water intake. Neurology and I work together to address seizures, etc. The list continues on.
We recently had her well visit with her amazing pediatrician, and upon leaving, he told me, “you have become a veteran.” It took me a moment to understand what he meant. We were going through Claire’s recent medical challenges, talking about the latest hospitalization she had, and I was bringing him up to speed on everything. I was very matter of fact with my updates. I’ve become so used to these visits… used to filling people in on her latest… used to accepting the new normal – whatever it was – and updating accordingly. Hearing him say this to me though, was one of those moments where I had confirmation that I guess I did progress a little and things did get easier in time. Because this was the same doctor who once gave me the advice to just focus on the next six months of Claire’s life and that’s it. The reason he said this was because during our initial visits, I was overwhelmed and anxious about many things.
Now, don’t get me wrong… grief will still hit me out of nowhere and knock me out for a little at times. My husband recently took my oldest son to Cooperstown, NY for a week long baseball tournament. He is not a coach, however he is in charge of running the team, taking care of the administrative items, logistics and financials. He needed to stay with the two other coaches and players in the barracks because only Sean knew who needed to be where, when, and how everything worked in order for the week to run smoothly for the team. We decided it didn’t make sense for Claire, my other son and myself to go because if we went, we’d have to stay by ourselves. There wasn’t tons for us to do outside of going to the fields, and the downtown area wasn’t very wheelchair friendly. Claire is 65 pounds now, and her new wheelchair is even bigger and heavier. My back is a mess, so me doing all the lifting for the week – getting the wheelchair in and out of the van without Sean’s help is especially harder these days. But not having many places to go to where we’d be able to fully access things… it just didn’t make sense.
I didn’t realize until they left, how hard this week with them away would be for many reasons. I was angry at Rett for the first few days and mad we couldn’t be there as a family. But – like other instances, I felt (the feelings that are normal that sometimes come with this diagnosis), I dealt (I acknowledged what was, and I let it be)… and I soon got over it because what is the alternative?
I refuse to let Rett get and keep me down because I’m not the type of person who likes to be angry, bitter or feel defeated. Like I mentioned before, I was always a happy and optimistic person, and I like this version of me better because it’s more natural for me, and peaceful. It’s taken some time and practice, but I refuse to let Rett (and now her other issues) dictate my attitude in life. Yes, my attitude will need adjusting at times – especially during the harder times… and there will continue to be good days and bad. However overall, I guess we really have come a long way in these past seven years because our good days definitely outweigh the bad ones now, no matter what is going on… and the opposite used to be true. And this is kind of a big thing… a good big thing.
So yes. I think that person was right… things did get better. And I am extremely grateful for our progress so far because this is definitely something I never realized could become a reality, back on June 22, 2011. Claire, we love you more than words can possibly describe… you truly are our angel.