My eyes well up with tears whenever I visualize myself answering the phone 2 years ago, on January 15th around 2pm. I was 9 months pregnant with Lauren and home alone while my husband was at work and Reagan was with the nanny in the same office building as him. It was only a few weeks ago that I could bring myself to throw away the sticky note that I had scribbled the words the nurse was saying to me, "genetic mutation on the x chromosome." What? She continued to talk but I was no longer listening.
Last year we purposefully planned Lauren's 1st birthday party on Saturday the 15th in an effort to hide the pain of the day and instead celebrate the life and joy that came on the 16th. It worked okay. This year we did the same thing, her birthday party was on Sunday the 15th. I don't know what we'll do next year when the 15th falls on a week day!
I held it together for most of the day and pushed away the thoughts as quickly as they arrived. I was getting her dressed after her bath when it finally hit me and I couldn't hold it back any longer. The tears flooded and I was overwhelmed with the feelings of pain all over again. I hate crying in front of Reagan because it is not fair to her.
Then a stuffed animal caught my eye that was laying on her bed, just a few inches from her head. The bear was given to my sweet girl as a Christmas present from her grandmother's best friend. The bear belonged to the lady's daughter, who was a teenager when she passed away almost 15 years ago from complications of cystic fibrosis. I was touched when she gave the gift to Reagan, it was such a sweet and selfless act of kindness. She said Reagan reminded her of her own daughter, who was also blonde, tall and thin.
The sight of the gift reminded me to be thankful and appreciate the moments. I could no longer feel sorry for myself and cry for our situation while my daughter was laying there and I could love on her instead, knowing that there are mother's who would give anything for the same opportunity. Yes, I still feel the pain and the loss of the dreams that I had for my girl and diagnosis day is always going to hurt, some years probably more than others. But I am thankful of the gift this mother gave me, the gift to treasure each day.
I've decided that he should sleep in her bed and be her guardian angel.
Several months ago I wrote about Reagan waking up many times during the night with screaming fits, seemingly related to stomach pains (read about it here: sleep issues). We visited the emergency room, received a diagnosis of trapped gas, stayed for 24-hours, and happily went on our merry way. I was relieved that it was not more serious and that she would finally have some relief. Wrong.
After a couple of weeks of peaceful nights, it started again. The majority of nights she would wake up anywhere from 2am to 4am, screaming and was difficult to console. She refused to sleep once she finally calmed down so we were all exhausted. Other nights the screaming would be every 3 hours, starting about an hour after she went to sleep. It was not only night screaming, the screaming would happen during naps as well.
I tried almost everything to find the source. We changed her g-tube formula 3 times, switched gas relief medicines, switched constipation meds, increased constipation meds, switched gas relief medicine again and finally visited a new GI doctor to do an Upper GI scope to make sure her Nissen fundoplication had not slipped or was too tight. Nothing helped.
In mid-December I realized that I had changed so many things that I no longer had a clue as to what might be helping and what was adding to the pain. So, I went back to the beginning and switched all her meds to how they were before the pain ever started, which also included starting her back on Nexium for reflux (something the fundo is supposed to prevent). And then I waited, and waited.
I am happy to say that 2 weeks later she finally felt better. It was magic, she just started sleeping again and woke up with a smile! I have waited to post about it in fear that putting it out in the universe would jinx it.
I still do not know what was going on with her little body and what the magical fix was. My instincts tell me that it was reflux because it was the last thing that I added back (after 4 months of being off) and her spells were classic reflux symptoms that she experienced before we started the meds. I am too chicken to experient and take her off of Nexium because let's be honest, Mama likes her sleep!
I knew this was a must read for me and would help with how stuck I have been feeling lately after reading the following description: "Bittersweet...It's the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul. Bitter is what makes us strong, what forces us to push through, what helps us earn the lines on our faces and the calluses on our hands. Sweet is nice enough, but bittersweet is beautiful, nuanced, full of depth and complexity. Bittersweet is courageous, gutsy, audacious, earthy."
Wow. I immediately loaded this book on my e-reader and dug right in once the girls were down for their nap. And then I stopped after about 3 pages so I could digest her words that were speaking to me loud and clear. It was all too familiar when she wrote, "For most of that season, I was clenching my teeth, waiting for impact, longing for it to be over." Yep, I know that feeling.
For the past two years, I go through every day of my life with the following thought, "if I can just hold on until tomorrow, next month, next year". I am walking through my life while holding my breath, afraid to exhale for fear that I will no longer be able to keep it all together. I am on auto-pilot. For the past two years, the Rett Syndrome monster has won. It has taken over my life and rendered me incapable of living. There have been weeks or months when things were going well and I started to feel a little again but then bam, out of nowhere I am pushed deep down again and realize that I am still holding my breath.
It is no surprise that I am not a huge fan of the holidays. I wrote a post on this blog at the beginning of December and titled it "bitter". After the holidays and the New Year, I continue to hold my breath because it is the month of January, the month when we received Reagan's diagnosis. I continue to try to focus on the birth of our second daughter, also in the month of January, instead of the ugly "D" day, but the thought of "is it February, already".
It might take me months to get through this book because I intend to read it slowly and deliberately, letting each word hang out there. I am hoping that this is the beginning of my journey in finding the balance again and learning to live my life to it's fullest.
Hi and welcome to our family blog! We have a 4 year old daughter, Reagan, who has Rett Syndrome and a 2 year old daughter, Lauren. This blog is to help others understand Rett Syndrome and to share our journey.