For Newly Diagnosed Families: My List of Hopeful Things


boy at window holding rainbow picture

When we first learned that my youngest daughter, JJ, had Rett Syndrome, I felt like I had stepped into a nightmare world. I gathered facts, talked to doctors, made appointments at clinics, scheduled tests, and answered endless phone calls. It was a terrifying whirlwind I confronted with little sleep and weighted down by the heaviest of worries. Again and again, I had to explain a diagnosis I didn’t yet understand to friends, families, neighbors, and acquaintances.


One of the few rays of light in those early days were the chats I had with other parents of children with Rett Syndrome. Several mothers from the International Rett Syndrome Foundation called me and asked what they could do. “Tell me something hopeful,” I remember saying. Because more than anything, that’s what I needed—reasons for hope. Thanks to these women, I got some.


Even so, it was still several months before I had a day that didn’t feel tinged with a nightmarish darkness. But that day did come. I remember it clearly. I was on the treadmill at the gym, trying to put a name to something that I hadn’t felt in so long I barely recognized it. After several long minutes of searching, I finally found the right word to put to it. Normal. After months of terrible unreality, I had reached a day that didn’t feel like it was too much to bear. Instead, it felt routine. I was so relieved I almost cried right there in the middle of my run.


There was no one big thing that kept me going until I reached that day. Instead, it was many smaller ones. JJ’s joyful smile when I entered the room. The feel of her arms wrapped around me during her afternoon naps. Meals placed in our freezer by neighbors. A vanilla frosted cupcake on my birthday. It was during this time in my life that I discovered the strength and power that can come from many small, hopeful things.


The world of disabilities and diagnoses can be overwhelming. I learned that it was okay to enter it gradually, step by step, in whatever way felt most comfortable. It was also perfectly fine to seek out the silver linings, bright sides, and positives to hold onto while I absorbed, processed, digested, grieved, and reconfigured my life.


Because I’d like to pay it forward to the other parents in my world, I’ve created some lists of the hopeful things—large and small—that have emerged from my life with JJ. In this first list I’ve included links to the posts that focus on the bright side of my daughter’s diagnosis. This gives readers a way to interact with my blog without having to dive into things they might not feel ready for. If all you can do is read about the positives right now, then do it. It’s important to find ways to keep up your spirits, especially in the beginning.


So here it is—the first installment of my collection of beautiful, hopeful things. I wish you and your family courage, love, and determination as you build up a list of your own.


Claire’s List of Hopeful Things:


1. Because of JJ’s diagnosis, my family has been introduced to a vast network of kind, caring, compassionate people we would have otherwise never met. We have crossed paths with teachers, therapists, doctors, bus drivers, medical equipment suppliers, nurses, and philanthropists. I’m sure there are many more to come.


2. It’s been wonderful to see how many people care about my family and my girls. Relatives babysit my daughters, neighbors bring meals, and friends text kind words on a regular basis.


3. The only other people who completely understand everything I’m going through are my husband and my oldest daughter. Because of this, I’ve developed profound, deep, and loving connections with them.


4. My oldest daughter has become more loving, empathetic, poised, and mature because of her sister’s diagnosis. She is also more and more comfortable with people who have all kinds of differences and disabilities. Rather than crumbling under the pressure, she is flourishing.


5. I have formed new online friendships with other parents in the Rett Syndrome community. This allows me to hear stories that resonate with me and to see other families and children that look like my own. I feel so much less alone now that we have a diagnosis and a place we belong.


6. As we have learned about JJ’s health issues, I have come to love my daughter in ways I never expected to. Because I work so hard for her, spend so much time with her, and focus so much of my energy on her, she and I have developed a deep and intimate connection.


7. I’ve been introduced to the innate goodness of the children in our life. The kids in our neighborhood push JJ around in her gait trainer and embrace her whenever she hits her pre-recorded “give me a hug” button. To them, she is JJ first and someone with Rett Syndrome second.


8. Because of JJ’s disabilities, I didn’t get the “happy end” I had envisioned for my family. But I did get a happy end, if I choose to see it that way. My house is packed with love, we have kind-hearted people in our lives, and there are many moments filled with hugs, kisses, cuddles, smiles, and laughter.


Stay tuned for another list soon. In the meantime, please let me know about your own hopeful things in the comments below.