Writing my memoir helped me heal, reconnect with myself, and find strength to face my challenges. Here are a few pf the lessons that helped me find the bravery to become my true self.

On September 3, 2024, I will publish my first book, Silence and Light: A Mother’s Journey to Advocacy. I couldn’t be more thrilled and scared at the same time. This book is a culmination of my journey through immense challenges and profound growth. It represents my transformation from a mother overwhelmed by her circumstances to an advocate who has found her voice and strength.

My Journey
A little over a year ago, I began writing my memoir as a way to process trauma, some of which I have experienced as a mom of kids with disabilities. My life had become a whirlwind of responsibilities and emotions, and I felt the need to put my thoughts down on paper to create a new understanding of those experiences and to heal. Writing became my sanctuary, a place where I could explore my feelings and begin to make sense of the chaos.

To aid my healing, I started going to therapy every week and exploring various energy healing modalities like reiki and guided meditation. At first, it felt impossible to slow down. My life had become robotic, and I was afraid to let people in, fearing I wouldn't be able to handle all the emotions. But slowly, I began to chip away at the wall I had built around myself.

Progress was painfully slow. Initially, it was difficult to quiet my mind, even for a few minutes. A friend recommended a 20-minute guided meditation session that took place twice a week at 6:30 am.

I decided to try it, and to my surprise, I loved it. This meditation, which I shared with my dogs while everyone else was asleep, became a cornerstone of my healing process. It left me feeling more energized and focused than I ever imagined. Although I struggled with "monkey mind"—restlessness and lack of focus—I persevered, learning to be kind to myself and gradually finding it easier to center my thoughts.

The Healing Process
Healing wasn’t immediate or easy. It involved a combination of therapy, meditation, and energy healing, all of which required patience and perseverance. Slowly, these practices helped me reconnect with myself and find the strength to face my challenges head-on. Here’s how my healing journey unfolded:

• Therapy and Energy Healing: Weekly therapy sessions and exploring reiki, guided meditation, and other healing practices.
• Slow Progress: Overcoming initial challenges to quiet my mind and embrace the practice of meditation.
• Daily Meditation: Making meditation a daily habit, finding solace and energy in those quiet moments.
• Positive Energy: Reading a transformative book on positive energy, which helped me reevaluate my relationships and priorities.

Finding Positive Energy
A life-changing book about positive energy helped me rethink my time and relationships. As an empath, I had to learn how to protect myself from taking on others' energy. The book's message resonated deeply with me:

“Are you forever rushing through your day, fending off chronic exhaustion? Are you desperately overcommitted, afraid to say no? Do you want to feel well rested and ready to conquer each day with enthusiasm, but fall short time and time again? If so, you’re the victim of a hidden energy crisis. Here, at last, is the complete prescription that will stop you from feeling constantly drained and enable you to live a more vibrant life.”

This revelation was crucial. I realized I needed to prioritize my own well-being to continue supporting my children and others effectively.

Planning My Second Book
Since writing my memoir, I’ve learned so much and am now planning a second book. This new book will dive deeper into struggles like overcommitment, perfectionism, grief, vulnerability, and finding oneself. I’ve come to understand that I am now a much stronger version of who I used to be. Becoming a mother changed me, but so did the challenges and triumphs that followed.

Life Lessons Learned
These lessons have helped me navigate life's challenges and emerge stronger and more authentic. Here are the key takeaways that have guided me along the way:
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1. Balance Self-Care and Care for Others: Prioritize kids, struggle in marriage, and find time for yourself.
2. Control and Letting Go: Learn what to control and what to let go of, and be brave enough to leave a marriage or relationship that doesn’t serve you.
3. Supporting Others: Know when to care for others and when to support them from the sidelines.
4. Asking for Help: Learn to let people take care of you and ask for help.
5. Self-Love: Heal trauma, be kind to yourself, and not base self-worth on others’ opinions.
6. Deserving Healthy Relationships: Accept that some relationships aren’t right, and be okay with that.
7. Self-Worth: Realize that money and external validation don’t define your worth.
8. Pursuing Passions: Do things you feel good about, even if it means losing yourself to find yourself again.

Moving Forward
As I continue on this path of self-discovery and healing, my journey is far from over. Every day presents new opportunities to learn, grow, and embrace the person I have become. With the upcoming publication of Silence and Light: A Mother’s Journey to Advocacy, I am filled with both excitement and a sense of responsibility to share my story with others who might find solace and strength in it.

I hope you can find a few minutes of quiet time for yourself this week, even if it’s something simple like quieting your mind while drying your hair. 

Remember, healing and self-discovery are ongoing processes that require patience and kindness toward yourself. Thanks for being on this journey with me and for reading. Your support means the world to me, and I look forward to sharing more of my story with you.

This past year has brought dramatic changes to my life. I'm sharing the latest chapter in my story.

Some of you have commented that I haven’t been as involved on social media and maybe I’ve seemed less engaged lately. Thank you for your concern, patience and support. You were not wrong. My life has undergone a seismic change over the past year, but it’s only now I’m ready to share. This is probably the most vulnerable blog post I have ever written and I’ve been hesitant to write it. 

You may recall, in August 2023, Todd and I celebrated our 25th wedding anniversary in Costa Rica. At that time I wrote a blog about how hard it was to keep a marriage together when you are parenting children with disabilities. As I wrote it, I was truly hopeful that our marriage would survive. After all, twenty five years ago Todd and I said our vows to each other and our life was wonderful in so many ways. 

You also may recall that last summer I embarked on writing my memoir. Writing the book gave me an opportunity to reflect on my life - the blessings and the challenges. During this process I processed a lot of trauma - some I didn’t know I had - some with Todd, and some by myself. It also caused me to come to some stark realizations. My kids were getting older. Todd and I were going to be empty nesters in a few short years. For nearly the whole of our married life, my life had focused on the needs of my children. For once I was reaching a stage when I could focus on myself. What did I want for myself? It was a daunting question.

In trying to get to the heart of it, I realized that I had put a wall up for much of my marriage, not even knowing it. I had closed myself off.  I knew I wanted to feel again - but I wasn’t sure where to begin. I couldn’t even share my story and feelings with the writer I had hired to help me with my memoir. My co-writer struggled to get me to open up and she still laughs about it now. I was so used to sharing my story in a very unemotional, organized way. 

I had devoted the last 25 years of my life to advocating for, supporting, and loving my kids. I tried to be a good wife. Meet everyone’s expectations. But there just wasn’t enough time for everything - and certainly not enough time for me. 

The Beginning

Early on when I found out about the kids’ diagnosis, I did whatever it took to help them. I didn’t prioritize myself or my marriage. I didn’t take care of myself and as a result my physical health and my memory suffered. While my kids thought it was funny that I lost my cell phone so many times a day, it worried me. I couldn’t remember anything unless I carried a notebook around. My doctor said it was stress related but I just got frustrated and internalized even more. I rushed to do more. I thought that if I just wrote one more email to the IEP team, if I reached out to one more person to explain Usher syndrome and deafblindness, things would be better and then I could slow down. But it didn’t work that way. Instead I ended up lost and numb. 

Over the years I’d lay in my bed at night wishing things were different. But soon my thoughts would turn to problem solving for whatever was the issue of the day. I tried to think positively like “I’ve almost solved this issue with Dalton’s IEP and once we get more support, he’ll start to thrive again and I can stop being in fight or flight mode.” But with four kids, there was always some other problem to solve. I just couldn’t get off the hamster wheel. My mind was always running on hyperspeed. There was no time to relax because there was too much to be done. If I didn’t help them, who would? I didn’t know how to feel anymore.

I now know that it didn’t have to be all on me - I could have asked for help, especially from Todd. But, at the time, I didn’t think that. I just felt alone and I was silently drowning, while on the outside my life seemed perfect.

The Awakening

One day last fall I woke up and wondered where the joy was in my life. I felt lost. I knew at my core I needed to make changes but I was afraid because anything I did for me might hurt the kids and Todd. Then I took a step back and realized that that is not the lesson I wanted to teach my kids about life and relationships. I wanted my kids to know that it’s ok to be true to their authentic selves. It’s ok to venture beyond the safe and known if it’s what their hearts and minds are telling them to do.

And so I took the first step. I decided to learn to love myself again. I meditated, went to therapy, went to more therapy and tried to rewire my brain to not feel like I needed to be perfect all the time. I took a hard look at the question, “What do I want the second half of my life to look like?” I discovered that, in the deepest part of my soul, even though I was so thankful for the life I had, grateful for Todd, for the kids, and for who I had become, I wanted my future life to be different. Deep in my heart I knew I wasn’t happy, but I really, really wanted to be. 

Becoming My Authentic Self

Bravely I began making changes in my life - gut wrenching changes. I moved out, asked for a divorce, and we sold our beloved ranch. I resigned from my job at University of Idaho so I could take care of myself and figure out what was next for me. I told you, seismic shifts!  It’s been hard! Although I believe these changes were right for me, I feel like I’ve let most of the people down in my life and that feeling is awful! I still am coping with these feelings.

But, finally, I do love myself again and I’m happier than I ever could imagine. Once I got to that point, I also realized that I deserved to be loved. I am truly a different person now than I was a year ago. So many people have commented on it recently. My spark is back - it had been missing for a long time. I’m more calm and present in my own life. 

Funny what happens when you are happy and least expect it, Bergen walked into my life. I just knew that I was meant to be with her. With her I didn't feel the weight of my life - I could laugh, be vulnerable, cry, and most importantly, feel again. I experience joy and love each and every day. I’ve cried more since I met her than I ever have in the rest of my life and it feels incredible. 

The Lessons of Discovery

This journey has been hard. Everything as I knew it a year ago has shifted as I have reimagined and rebuilt my life. 

I learned that I am so much happier now, not just because of Bergen or anything specific I “did” but because I was brave enough to choose myself - to realize that I can still be an amazing mom while being true to myself. I don’t have to hide my feelings from everyone and it’s ok to be vulnerable. And that vulnerability allowed me to understand my needs and desires.

I’m now able to be thankful for the last 25 years, the lessons that my boys have taught me about myself, for the laughs that Todd and I had as we messed up multiple times. I am so grateful for Todd, the joy and love of our marriage. I am grateful that God chose me to be those boys' mom. It has been my greatest joy. 

I am also grateful for Bergen for looking past my pain on that first day we met and seeing that there was light inside me. Thank you for loving even my most vulnerable parts. 

I am proud of my bravery this past year. My life is truly beautiful, it always was and I just couldn’t see or feel before. I can’t wait to see what is next on my journey. 

What’s Next

Some things haven’t changed. I’m still doing what I love in the field of disability. I’m still focusing on helping families like mine and I can’t wait to get back into research again. The memoir I told you about, it comes out this summer and I hope you will read it. 

My story, just like yours, is unique. It can be messy, chaotic and overwhelming, but it’s beautiful and it’s mine. If I could change anything it would be that I wish I had realized sooner that I didn’t have to lose myself in order for me to be the best mom I could be. I wish I would have learned to be vulnerable sooner. 

My words of hard-earned advice: be true to yourself, whatever that looks like for you. If you open yourself up to something different, you never know - something even more beautiful might be right around the corner. And know you are not alone. If I can support you in any way, please never hesitate to reach out. 

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Every Usher Syndrome Awareness Day is a time I reflect back on our lives since we found out Conner, and then Dalton, were diagnosed with USH 1b. Here are my thoughts for 2023.

The third Saturday of September is always Usher Syndrome Awareness Day. In 2023, that’s September 16. It’s a day I always reflect on our journey with our 2 sons diagnosed with USH. 

Nineteen years ago we found out that our oldest son, Conner, had Usher syndrome type 1b. I remember that day like it was yesterday. I went solo to Conner’s eye visit because it was supposed to be routine - Todd didn’t need to take the time to go with me. We were there to the bottom of why Conner would cry when it was dark. We were absolutely unprepared to hear “your son will someday go blind and there isn’t much we can do”. I don’t recall driving home at all - I was in complete shock.

The good that came out of that day: We needed to know more. We needed to find a cure to help our son. A month later we started our non profit, Hear See Hope Foundation with an USH cure as our mission. Nearly 20 years later there still is no cure, but the collective “we” have learned so much and are closer than ever. I’m thankful we took that terrifying day and turned it into something positive.

What else has been good? We’ve met many amazing people. I’ve learned so much about myself. I’ve switched careers to one that I love and helps others. And we know these boys were born to us for a reason. 

Usher syndrome, of course, has impacted our sons’ lives profoundly. But here to, we can also find the good:

Conner is 24. He’s quick witted and smart. It’s fun to get into philosophical conversations with him about all kinds of subjects. I always learn something new. He just moved back to Washington state so he’s close to us again. He was diagnosed at 6 months of age with profound hearing loss, received his first cochlear implant at 13 months of age and his second at age 9. He has experienced balance problems since birth and that probably bothers him the most about his condition. It wasn’t until he was 5 that we learned he had Usher syndrome. Right now he has about 5% of his peripheral vision and he uses a cane. He’s an avid reader thanks to his Kindle app with magnification and inverted colors. Being my first born, Conner has taught me so much as a mom. I’m blessed to have such an amazing son. ​

It’s important to focus on the good, but equally acknowledge and process the challenges and struggles. I started this emotional year with a breakdown of sorts. The kids were struggling and I had taken on too much. I had to find time for self-care, which I did. Only then could I see all the good in my life, not just the obstacles. Which is what I am celebrating today.

This wasn’t the life journey that I thought I would be on but life rarely goes according to plan. Before I had kids, I was a very private person (I still am) but I knew I had to advocate for my boys. I found my voice and realized by sharing my story I could help others. In June, I started writing my personal story into a book (it’s halfway done). I’ve allowed myself to be vulnerable and share my raw honest feelings about this journey. This has been very cathartic for me. 

More good. In August we held our first USH event at our ranch. The ranch has been a major step in our journey. Two years ago I saw this property in Carnation and I instantly knew I needed to have it. Todd thought I was crazy but supported me to make it happen. For those who know us, understand that when we decide we want something we dive right in. In this case, we had no idea what we were doing. We had no animals. And, we certainly knew nothing about how to care for animals. But, I saw a vision that thankfully Todd shared. Leading up to the event, Todd worked countless hours getting our place where it is today, ready for guests. 

Being on our ranch around the animals, enjoying the outdoors, has been very therapeutic for me. It’s helped me recover from the years of trauma since the kids' diagnosis. When I saw the impact on our family that this place has had, I knew my life goal was to share this with others. This is how the USH event dream was born. I wanted to bring individuals who are deafblind and their families here in hopes that this place could give them as much joy as it has given us. Last month we realized my dream and those three days were life changing. Not only were all 4 of our boys here, but we were surrounded by our broader Usher syndrome family. Seeing the smiles on people's faces made me so happy. Yes, it was a lot of work but it was so fulfilling. It's hard to describe, but I felt completely at peace. ​

Lastly, I couldn’t do any of this without my village, my USH/DB community. When I have bad days and I don’t know what to do (and I still have many of these!) I look to my USH/DB family for support. You all have never let me down.

It’s funny how 2023 started on such a low for me, but it’s turned around and there is so much to be thankful for. I’m so proud of our boys and who they have become. I’m proud to be their mom. 

So, on Saturday I’ll be spending the day hugging and laughing with our boys and appreciating the broader Usher/Deafblind community that surrounds us with love and support. Thank you to all of you that read my blogs, help with my research, and most importantly pick up the phone when I need you. 

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We rarely talk about it, but raising a child with disabilities takes a toll on a marriage. As Todd and I celebrate our 25th wedding anniversary, at this turning point in our lives, I'm reflecting back and speaking out about what I've learned.

A child with a sibling who is disabled plays a special role in the growth of a family. Our son Cole is that person in ours. Here is his story.

Our family celebrated a joyous event last month. Cole, our 2nd son, graduated from college. His future is bright. He’s attending graduate school right now and we just moved him into his new apartment. For those who know him, he’s loved basketball since he was in the 1st grade and always had the dream to work in the NBA. He’s worked so hard to make that dream come true and is on track to make that happen for himself.

So, as I saw him walk across that stage, words cannot express all the emotions that washed over me. All my kids are special to me in their own unique ways, but today I’m going to tell you about Cole. 

Cole is 17 months younger than his brother, Conner. We found out we were pregnant with Cole right around the time of Conner’s deafness diagnosis. Throughout my 2nd pregnancy we were in complete panic mode - going from one doctor appointment to another, getting Conner approved to receive his cochlear implant and just figuring things out what his diagnosis would mean to our world. It was a stark contrast to when I was pregnant with Conner. With Conner, Todd and I played music to him in the womb and took time to anticipate his birth. With Cole, I was just hoping to find time to take a shower and get some sleep. 

Yet, when Cole made his way into this world, it was such a happy time. He was healthy and he passed his newborn hearing test with flying colors. In my eyes, he was perfect - such a happy baby.

Cole’s childhood was not what I would have hoped for him, however. We were constantly on the go when he was a baby, focused on Conner - driving an hour to and from speech therapy, doing occupational therapy, and more. I had to cut back at work and we scraped up enough money to share a nanny with our neighbors. Cole spent most of his days with the nanny in the car meeting me at various medical appointments. He only napped in a car seat. I was so caught up in my grief that I missed out on some important points in his early life.

Cole grew up not knowing a life any different than this. He was born into this wonderful but chaotic family life that consisted of doctors appointments, fundraisers for Usher syndrome, etc. When our youngest son, Dalton, was born with Usher syndrome like his older brother, Conner was thrilled - another brother like him. Cole, on the other hand, was upset by this news. It’s right then that I realized how hard it had been for him too. It hit me hard. 

As the boys got older, Cole took on an important role in the family that I didn’t probably properly acknowledge or understand more fully until several years later. He and Conner went to the same schools and Cole played a mostly silent but important role in his older brother’s life. He turned on lights, held his hand, watched out for him at school to ensure people did not say mean things about him. He was there for Conner every step of the way. When his two younger brothers were born, this trend continued. 

I honestly don’t know what I would have done without Cole. Not only was he a huge support for his brothers but as he got older, he became a respite for me as well. I tried hard to spend one on one time with him. I loved hanging out with him. It was my reprieve from deafblindness and all the worry. I enjoyed watching him play basketball and tried my best to take him places with his friends. I had missed the early years and I wanted to be there for him. 

Through it all, I have always wondered if I did enough to support him. As Todd and I grieved, I’m sure he was grieving too. Did we talk about it enough as a family? Did we find ways for Cole to just be Cole - without the burden of needing to protect his siblings? What were the impacts of him not having a “normal” childhood? Over the past 20 years, I’ve thought about this often - wondering if I did enough and if he was happy.

Then I saw him walk across that stage to graduate and my heart burst with pride. The road wasn’t what we thought it would be, but it was our unique journey - it is his unique journey. I am so proud of the amazing man he has become. Today he frequently calls his brothers to check in on them. He makes an effort to spend time with each one of them separately. I see how he is such a good friend to his brothers and to his friends. He’s the first person to offer help if anyone needs it. He is kind, compassionate, empathetic, and caring. He’s also dedicated and more motivated than anyone I know. In my eyes, just like when he was born, he is perfect.

Everytime I go to a workshop that discusses the impact of disability on siblings, I am instantly brought to tears. As parents with children with disabilities, often we are so lasered focused on the needs of these children, the other siblings live in the shadows. So today, I wanted to recognize the important role Cole and his brother, Hunter, play in our lives. The world is a better place because you both are in it. Thank you for all you do. To all the siblings out there, thank you for being you - truly special in many ways - a true gift to your families and this world.
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When your child has Usher syndrome, it's normal to be anxious awaiting annual vision and hearing screening results. As the mom of two with USH, even after 20 years, the flood of emotion tied to these annual visits remains, and that is OK.

Today was Dalton’s annual visit to the retinal specialist. I can’t tell you how relieved I was to hear the words “there has been no change in his visual field since last year - and actually not really much change at all since 2019”. 

I’ve been going to these appointments with both boys for about 15 years now. It is an anxious time waiting to hear what the doctor will say. After all these years, they don’t get easier. Before and after the appointment, I’m always flooded with emotion, so to process my feelings, I’m sharing them with you and leaving you with some things I have learned from this most recent journey. 

I should start by saying this flood of emotions always occurred with Conner too, but for some reason they seem stronger when it comes to Dalton (since he’s my youngest). And, if I’m being honest, the feelings have been more intense lately all around.

Why? Maybe it’s because these last few months have been hard for me - there has been a lot going on with the kids and that has sparked a lot of feelings of past grief for me. Grief is a funny thing - I’ve learned it’s more like a roller coaster with big ups and downs. Just when I feel like things are under control, something else changes.

But why grieve today? I’ve been doing a lot of soul searching, trying to figure out why grief is hitting yet again right now - 20 years after our initial diagnosis of Usher syndrome.

I think it relates a lot to the eye appointment today - the anxiety I hold inside for my son. And I believe it stems from a fear of the unknown. That may sound strange coming from a mom with an older son with USH who is thriving, but in my reflection, I have determined this could be the case because their experiences have been so different.

In fact, I don’t think I’ve ever really come to terms with the fact that Dalton has Usher syndrome like his older brother. Yes, I do a lot in the field of deafblindness so I know it’s not rational to be in denial. But, here I am. As I said, Dalton’s journey with Usher syndrome has been so different than his brothers - thankfully with a much slower vision loss progression.  

While the slower progression is such a blessing - I spend a lot of time worrying about when the bomb is going to drop. I recall, like it was yesterday, when Conner was Dalton’s age. We were switching schools yet again because of challenges in class. Conner has been night blind since he was about 5 and his peripheral loss was so significant that by the time he was Dalton’s age he was struggling in school. 

At 15, Dalton now, on the other hand, continually tells me that he is not yet night blind and doesn’t notice peripheral loss. Not that I want to doubt Dalton, but because his progression was so different from my experience with Conner, I was always worried he just didn’t recognize the symptoms. Today we pretty much confirmed with the retinal specialist that, yes, Dalton has not experienced any significant vision loss. The relief for me is palpable. 

But even with this news, I still spend a lot of time worrying that one day Dalton will wake up and will have lost a significant amount of vision - because it’s what I knew with Conner’s journey over the past 20 years. This lack of control paralyzes me at times. 

For today, I can put those worries aside. My baby boy’s eyesight has not really gotten worse in the past 4 years. I hold hope that maybe his progression will continue to be significantly different from his brother’s, which is ok - even wonderful. Or, in these moments of good news, I can accept that maybe tomorrow the bomb will drop like I have always feared, but Dalton will persevere just as his brother has. In today’s moment of hope and strength I remind myself that this is his unique journey and I shouldn’t compare. We are all ok and we will be ok, no matter what tomorrow brings.

My lessons learned that I share with you today are:

1. It’s ok to embrace grief whenever it arrives - and to expect it continually rear its ugly head from time to time. You are allowed to have your worries and fears. These are natural emotions. Process them, but don’t allow them to overwhelm you. Reach out for help if you feel you are drowning.
   
2. It’s important to celebrate when there is good news like we had today. We don’t know what the future holds. But good news is good news. Enjoy it. Revel in it.
   
3. This is a long journey and every person goes through the journey differently. My boys' experiences are different. Todd (my husband) and my journey through grief is different. And our family’s experience is different from other family’s. There is no right way. Accept that other family members may experience grief at various times and levels. Offer support for one another. You are on this journey together.
   
4. We are always learning. Look for the lesson in every situation and grow from the experience. Yes, this is hard at times but being on this journey has made me and my family stronger and it’s the path we’re meant to be on - even if I question it at times. 
   

I am thankful for all of you - my village. You help pick me up when I am having a bad day. You also help celebrate when we get good news like today. I hope I can reciprocate for you. And I hope you do for others. The community is what makes us stronger.

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Finding the right time to tell your child they are deafblind is a very personal decision. Lane shares her story and offers advice and strategies for parents facing this difficult conversation.

The idea for this research study came about because of my experience as a mom to two amazing boys who are deafblind. This article is based upon my dissertation. I included the following vignette in my dissertation and I wanted to re-share it to give some context behind “my why”. Still when I read this, it makes me emotional. I know I am not alone and that many other families feel emotional when thinking back to any struggles in advocating for their child’s needs. ​

Conner, Dalton & I spent a fabulous weekend with our USH family. It unleashed a whole swarm of feelings and revelations. 

This past weekend I had the pleasure of attending the 14th annual Usher Syndrome Connections Conference in Austin, Texas with Conner and Dalton. We’ve been to many of the USH conferences before, so I felt like I knew what to expect when boarding this plane to Austin. 

What I didn’t expect was the myriad of intense feelings that overtook me from the minute the plane took off from Seattle. I felt happy to have life to slow down a bit and spend some quality time with just Conner and Dalton. I felt motherly pride. It was fun to hear Conner talk about the agenda and how he was looking forward to many of the sessions – and how relevant they were going to be to his new job at Helen Keller National Center. Dalton was equally looking forward to using his ASL, and connecting with others. 

Once in Austin, more unexpected intense feelings popped up. As we checked in, we were greeted by a group of people we hadn’t seen in person for three years. I felt supported and loved and embraced by a strong community.

Now mind you, I thought I was ok. After all, I spent a lot of time talking with families and educators through email or Zoom. And, actually, during the pandemic I’ve probably been able to connect with more people than I would have in the past, due to technology. 

But what I realized in that moment, surrounded by smiling faces, is how much I’ve missed that in-person connection with members of our community. There is absolutely no substitute. 

Our little family has been part of this community for over 20 years and so it feels like family to us. Some of these individuals I’ve known for over 20 years. And so even though we hadn’t seen each other in three years, that first moment in the hotel lobby felt like no time had passed. We didn’t have to say anything to each other. The hugs said it all. 

I experienced feelings of joy when I was able to meet face-to-face with families with young children who I had only met virtually. It was incredible to see so many first-time attendees at the conference. Being connected, and being able to give so many members of my USH family hugs this weekend, was something that I needed more than I could imagine. 

I felt very humbled that I was able to speak at this event about IEP Collaboration. I felt empowered presenting in-person knowing that it was being live-streamed to so many others virtually – making me realize how big our community of support really is. We have learned so much during the pandemic on how to connect virtually in positive ways and this weekend was a testament to what we are now able to do, thanks to technology. 

By the end of the weekend, I felt a renewed sense of purpose. Sometimes it’s easy to feel isolated and wonder if anyone else is going through what you are - whether anyone else understands – whether the work I do is helping. 

I am not alone. I am where I’m supposed to be, doing what I’m supposed to be doing. I have an amazing community of support of family, friends, and my broader Deafblind and USH family. For that, I feel grateful. 

Some take-aways from the event:

1. Rebecca Alexander spoke about families and caregivers and the need for self-care. As a parent, we cannot ignore our own mental health needs. The family member who has USH is not the only one impacted and to think of it that way is putting too much of a burden on them. We must take time for ourselves – doing what gives us joy, talking with someone if needed, and making sure we are our best selves. This is something I struggle with a lot. What I realize is that it’s totally normal for us, as caregivers, to be the patient sometimes – to address our mental health needs – so we can best support our loved ones.
2. Independence vs. Interdependence was a theme throughout the weekend. It really has me thinking. I have spent so much time working toward the goal of ensuring our kids are independent, but I look forward to thinking about the importance of interdependence; how can we foster our loved ones not only to be able to make their own decisions, but for them to have the support they need to carry through with them. It’s a subtle but important distinction that I will continue to grow in my thinking.

Thank you to my entire USH family for a wonderful weekend. As I start my new job as the Project Director of the Idaho Project for Children and Youth with Deaf-blindness, I feel supported and thankful – and I feel ready to take on this next challenge.

Thank you for supporting the work I do. 

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Sometimes, as moms, it gets to be too much. Especially if you are a mom of children with disabilities. This blog is for all the moms, to let you know you are not alone, it's ok to break down and you will find your strength again.

Mother’s Day had me in a reflective mood as I sat down to write this blog. This has been an incredibly difficult year for me personally - a year of immense personal and family transition. On the outside looking in, it may seem like all is great in our world, but it has not been an easy year. I debated whether to post an article whose theme was of struggles and challenges. But, writing it helped me put things in perspective and motivated me to make some moves I had been putting off. I decided that reading it - and knowing you are not alone in your own struggles - might be beneficial to you as well. Here is my journey.

You’ll recall last June we bought a ranch. While it’s been great and I love every minute of it, it’s been a lot to handle on top of everything else. 

Conner, our oldest with Usher syndrome, graduated from college last year and moved back near our home in Washington state. He’s been struggling with how to find a job during the pandemic. Even though he's been living independently ever since he left for college, there are a lot of things that he continues to work on to achieve his long term goals. For example, he’s been exploring the types of accommodations that might be necessary when he gets a job - and also those he needs while looking for a job. He’s been working on his orientation and mobility skills - something he’s always been strong in but the pandemic made that a challenge, so he needed a refresher. He has been learning how to cook healthy meals for himself. 

Honestly, he’s doing so great with all of this, and I know this is his journey, but as a mom I underestimated how hard this would be to see him struggle as an adult and grow. I’ve always been there to advocate and protect him, but I know that my role now is to support him as best as I can and to let him live his own life. I am so proud of him for persevering through this challenging year. He has a few really exciting opportunities in front of him and I know he will do amazing things.

Trying to get back to “school life as usual” has been more challenging this year than we all anticipated. With Covid and staff shortages, there have been lots of substitute teachers, which has been really hard on Dalton. In a normal year, he experiences more fatigue as the year goes on but this year is far worse than normal and if there is a substitute teacher, it is a meltdown. I think we were all ready for summer break around January! 

With my focus turned toward everything going on with home and family, I didn’t recognize that I was also struggling. I had buried myself into my work yet again and hit burnout at the end of 2021 - working 60-70 hours a week. I’ve now cut way back on my commitments but I’m still having a hard time getting back on track - finding my passion again, finding the time to reflect, write, and focus. I’m not really sure why. Maybe it’s partially because of the emotional impacts of the pandemic - all the stress and uncertainty, on top of my regular stress of being a special needs parent. 
Last week all of this hit me - and hit me hard. I found myself crying in the shower, the weight of these past few years finally crashing over me. This forced me to slow down and notice all that I have to be thankful for. 

Through all these challenges, I am thankful for the opportunity to be a mom to four amazing boys, 5 doggies, 2 kitties, some pretty cool horses and many other animals. I am also thankful for my husband, Todd, who knows just what I need when I am down. 

As I write this on Mother’s Day weekend, I reflect on all I’ve learned by being a mom - mostly about myself. The grief cycle of being a special needs parent is like a roller coaster - just when you feel like you figure something out, something else comes up - like an eye doctor appointment where you pray that your child’s vision hasn’t declined as much as you think it may have. 

But through it all, I know I was chosen to be their mom because I am strong and I am what they need, even when I am that vulnerable mom crying in the shower. 

This Mother’s Day I give thanks for all that I have. I give thanks to my boys for helping me be my best self and for giving me the best hugs.

To all the fellow mom’s out there, I wrote this blog in case some of what I am feeling resonates with some of you - for you to know that it’s ok to not be ok sometimes. 

I see you and all you do for your families - for your kids. Thank you for fueling me to do what I do for children with disabilities. I hope you had a wonderful Mother’s Day! Cheers to a great year.

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