Category Archives: Wolf-Hirschhorn Syndrome

Finding the Finish Line


I stand on this ledge again, looking out. I see myself. This time I am sitting on a couch. I can see the back of my head, the silhouette of my body through the living room window. I am completely still. I see exhaustion and some loneliness. I see wanting more. I see myself, a woman who has worked so hard all Summer long, now wanting-to-be-held. 

I have seen (with my eyes wide open), I have noticed, I have practiced. I have laughed and lived and stretched my expectations beyond a point I thought was possible. I have felt empowered and overjoyed and proud. I have seen beauty and witnessed love. It seems I have experienced it all, day in and day out. 

He has been by my side the whole way. Together we have done this. We have created a bond over time that feels unbreakable. With each meal we feed our children together, each decision we make for our children’s well-being, each adventure into the unknown finding success and kindness and places many just dream of experiencing along the way. 


Sometimes the finish line seems so far away the closer we get. The long drive to California to visit my mom for example. That first part to the trip always seems like a breeze. By the end, especially those last 2 hours (2 out of 12) it can feel so painful. This is how I feel today. Like we are so close to that finish line, but it feels unreachable. Will I make it? 

This is one of those Summers that feels special. There are many reasons that it feels special but one of the main reasons is that I spent close to every single day with my children. We had caregivers in and out of our home for some of the Summer but often it was only one provider which left me also at home (being the other provider and Mom). Some days I spent on-my-own caring for my children. Other days I had someone the second half of the day. It was the least help with childcare I have ever had in a Summer and I am a week away from my kids going back to school.


This transition from my kids being at home to school is bitter-sweet. Honestly, I didn’t think I could do it. I am tired and weary but I am also grateful for this time I have had with my children.  Mostly have done this with grace, digging deep and making friends with myself in a way I did not know before. Mostly I have done this with strength and confidence and joy. I have had few moments like today when I have felt, where is everybody? But I think this 111 degree weather has begun to go to my head along with feeling burnt out, which I would say is not surprising given the type of caregiving/parenting I do on a daily and nightly basis. I look forward to some time to decompress and stare up at the sky but I will look back at these concentrated days with my children with honor and pride and wanting to cry out to the world, THANK YOU! THANK YOU! THANK YOU!


Reawakening to Joy


One morning, several months ago, I looked out my front door and made the profound realization that I am doing something most people are terrified of: I am the parent of TWO children with multiple disabilities. Both my biological children were born with a rare genetic syndrome. What does it mean to be their mother? Answering this question in full could fill a book. To sum it up, being the mother of two children born with the same genetic syndrome, manifesting in having multiple disabilities, means that my husband and I are very busy! Our days and nights center around caregiving our children. We make special food and feed our eleven year old son and nine year old daughter every meal, make sure they are hydrated, dress and bathe them, take them to the restroom and change their diapers several times a day, tuck them in bed and read to them at night, and make sure they are stimulated, but not over-stimulated. Additionally, we take them to weekly therapies and to their specialists, worry greatly when they get sick, and work closely with their school teams and after school therapists, hoping they will walk or talk or feed themselves one day. We work hard to help them feel included in a world that does not easily welcome children like ours. Even at the end of a busy day of caregiving we ask ourselves, “Are we doing enough?” Our job is not an easy one. Many tell me they couldn’t do what we do, saying, “I don’t know how you do it.” The rewards are great, but often unseen. The part of “special needs parenting” that often gets overlooked is that we experience profound moments of love and connection through nonverbal interactions, as well as unexpected moments of breakthrough. These moments typically don’t last very long, so they are important to witness and see. Our home is full of love. When our kids wake in the morning we cuddle them and oooh and ahhh at how amazing they are. As a parent of two children with significant disabilities, it is crucial that I am able to see this love, joy and hope. There were several years that my ability to see these key components in our lives was clouded, so to now be able to witness the depth and love in our home is a gift.

Even with so much love, caregiving has taken a toll on our bodies, minds, hearts, and for many years, on our marriage. For several years I sat in a deep depression I didn’t even realize I was in. Until I had some special folks take me under their wings, I was just in survival mode, still reeling from the years of just trying to keep my children alive. Thankfully, almost 3 years ago I was saved; I don’t say this lightly, as at that time I was in a place where taking my own life was frequently on my mind. I had lost all hope.  

One day, I found a modality of mediation and relaxation that resonated deeply with me; to this day I practice it almost daily. Yoga Nidra is a guided, lying down mediation that allows one to experience the deep, healing relaxation the space between awake and sleep provides. Because it is so close to the experience of sleep, almost anyone can experience its benefits right away.  This is what happened for me. In this deep state between waking and sleeping, I was able to completely let go. I was able to do NOTHING. This is quite a concept for someone who had been running for years to get her kids to therapy and doctor’s appointments, and so much more, believing that if I didn’t do all of this I would be failing them, that they wouldn’t someday reach their full potential in life. It was all up to me. If I didn’t do it, the boat would sink. The weight I had been putting on myself for so many years was heavy. It ended up making me literally sick, with an autoimmune disease, depression and anxiety. It wasn’t until the moment I was offered permission to do nothing that I began to let down. Doing NOTHING was an option.  WOW. To this day I say “WOW”. I can choose to do NOTHING. This was the moment my life began to turn around. I began to heal myself. I began to make space for grieving, mourning the loss of what I had hoped my life would be. I began to shed the layers of depression and feel whole again, to let go of the pressure of being everything to my children. I began to see the light, to feel joy again.

In both my paid and service endeavors, I have always worked with women, particularly with moms, so it was only natural that I would continue doing so after becoming a mother myself. In those first moments after discovering Yoga Nidra, I had a vision of bringing this modality to my community. These days that community includes mostly moms and families who have a child with a disability. Right away I believed Yoga Nidra would be an amazing modality for others also going through what I experience. The definition of Yoga Nidra is Sleep Yoga. Yoga Nidra allows one to experience that state between awake and sleep through  a 30-45 minute session, equivalent to 3-4 hours of deep sleep. That’s pretty incredible and healing for someone who has been sleep deprived for many years!

Sleep deprivation is no joke. For years my husband and I did all the aforementioned caregiving tasks on very little sleep. I liken it to an intense postpartum period lasting for years, plus taking care of two children where there is truly no handbook for that care. We still experience intense periods of times like this, especially when one or both of our kids gets sick or one of them has had surgery. These days, because of Yoga Nidra and being conscious of self care as essential in our lives, we have found a sweet spot of thriving vs. surviving in our family life and it feels so good. Not only have I discovered the benefits of Yoga (and Yoga Nidra) in my life personally, but my husband has also committed to a daily meditation and Yoga practice. This has been life-changing.


I founded Journey into Joy in October 2016. Journey into Joy is a self care and relaxation group for moms who have a child with any disability. It has become a sacred group for those of us who attend regularly, realizing how precious this time is to take care of ourselves. We have learned how good it feels to let down, to not carry it all, all the time.  When we look around the room, we understand one another without explanation. For the first time in my parenting life I am able to truly relate to other mothers; this alone has been very healing.


In October of 2018, I had the honor and privilege of expanding Journey Into Joy by hosting a mom’s retreat for 8 other mothers. All who attended the retreat had previously attended the monthly group, and many of them were regulars. In this day and half we were able to go deeper into our own healing journey while feeling connected and held by one another.   We shared our most vulnerable feelings about being moms of children with special needs, crying and laughing together. In those moments there was a deep understanding of where we have been as parents, of one another’s struggles, fears, joys and challenges. We practiced Yoga Nidra with three different teachers over the course of the weekend. Each of the teachers brought her own style to the practice of Yoga Nidra, including dharma talks and sharing, movement and a talk about chakras, prayer bowls and some fun with mudras. If any of these concepts are foreign to those reading this, they were also to many of the moms. It was a fun way to explore different avenues of self care that can easily be brought into our daily home routine.  This is key for moms who have a difficult time fitting in even the thought of self care, let alone adding something new into our complicated busy routines that would just benefit us alone. We tend to think self care is selfish and will only benefit the person participating, but the truth is, when we care for ourselves there is a ripple effect; when a mother chooses to care for herself, it positively affects her entire family, and perhaps her entire community.


The Journey into Joy group includes moms who have one or more children with Autism, Down Syndrome, other rare genetic syndromes, deafblindness and mental illness.  Some of us are step-parents or single parents, and may also have “typical” children. Some deal more with “behavior issues” while others havel more with medically complex children. Our children may be able to walk and talk, while others use wheelchairs and sign language or talkers. Some of us have lost our child with special needs, others live with the fear of losing our child. Even though our experiences are not equal, we share a commonality that does not waiver. We are able to hold space for one another. We understand what it feels like to have a different life than we would have ever imagined for ourselves as parents and for our families. We understand the challenges of advocating for our children, whether it be in the school system or for equipment or services.  We understand how it is to spend hour after hour on hold waiting to speak to an insurance agent. We understand how it feels to sit by our child’s bedside in the hospital hoping and praying he or she will get through this time, that there won’t be any complications that will make life harder. We understand one another’s fears of the future for our children. We understand how it feels to attend a birthday party and not feel included. This is the power of coming together as mothers with a fundamental, life changing shared experience: we get it.



Crossing over Thresholds


The unknown is what really scares us. We want to know what’s ahead, that our children will talk and walk and eat and dress themselves and be cared for. One day they will tell us they love us.  One day they will look us in the eye and say “Thank You”.  “Thank You for all you have done for me Mom and Dad to make me the great person I am today”.  We want to know that everything will be okay, all according to plan.

This was not the plan laid out for me as a mom.  In those early days I woke up from a very broken night of sleep not knowing what was ahead of me from moment to moment.  I lived in the uncomfortable silence for years with two children that could not speak to me.  They were not able to be the starter of conversations, the curious beings that I had so longingly hoped for for so many years. I became lost in my own thoughts, my own mind chatter and fear of the future.  I was so caught up in this fear and this swirling of stress that I forgot how to laugh.  For quite sometime I forgot what it felt like to belly laugh.  I could still smile enough so that no one really knew how much I was dying inside, but I could not laugh.  It wasn’t until recently that I realized again how good it feels to laugh, an experience that has taken me by surprise.  To go to bed laughing, to wake up laughing, a joy that had been lost deep in my sorrow.

A few months ago a friend, whom I highly respect and look up to, told me she was grateful that I am still alive.  I had shared with her, a  couple years earlier, that I had this plan in my mind.  The plan was that I would write a letter to everyone involved in my life or my children’s lives (doctors, therapists, family members, etc) explaining to them why my life was so hard.  Essentially letting them know what they were not doing to help me. I had become so unhappy that I didn’t want to continue living.  I had lost all hope, joy and laugher in my life.  Of course before following through with this most permanent decision I would make sure everything was lined up for my family to be taken care of.  As I write about this now it seems so unreal, silly almost;  I certainly have no intention of making light of feeling this way for myself or anyone that has ever experienced this extreme sorrow.  This was the loneliest time of my life.  I had truly lost sight of myself and who I was in the world, as an individual, as a mom, as a human being.  I felt no one could understand my hardships and if they possibly might, they were too busy in their own challenges.  Life became extremely isolating for several years.  When it comes to being human, I am very social.  I have lived in community several times over the years;  I was the Homecoming queen in high school.  I like people and I like to share.  But I had found myself dangerously alone.

This sadness came on, I think, during a period of time that we could just not figure out how to help my daughter.  We spent many, many nights, for almost a year in a half, up most the night trying to sooth our 4 year old daughter, seemingly possessed by something unknown to us.  She was scratching herself and hitting herself all through the night, to the point of having scabs all over her head.  It turns out initially she was extremely constipated.  This diagnosis finally came about after visits with several specialists and two visits to the ER and finally me insisting that they do an abdominal X-ray.  I was relieved to learn she was constipated.  She was “cleaned” out in the hospital over a period of 3 or 4 days which solved the problem temporarily, but she went back to her “old ways” and the process started all over again.  I felt helpless as a mother.  Nothing I did seemed to help.

As one might imagine my marriage was at risk of completely falling apart.  For several years my husband asked me to get my life back.  He begged me, in fact, to take some time for myself.  You see, I hadn’t done anything besides caregiving and thinking about my kids since my son was born.  It took my husband begging me several times and then finally a badass life coach telling me one day that I needed help.  She told me over and over again, session after session how important putting my self first was.  Wow!!  What a foreign concept it was for my caregiver ears.  How was it even possible to “get my life together” and “put myself first”?  The road towards healing and getting my life back was not a straight forward, full steam ahead path.  It took twists and turns and sometimes I would back peddle for a while.  I remember having the sensation for several years of dog paddling, just keeping my head above water—almost drowning, but not quite.

Then, one day, I began to see things very clearly, as if a fog had lifted.  I remember looking out my front door one morning, in the distance we have a view of Camelback Mountain, a view that I have seen everyday for 11 years.  In this moment I realized my husband and I together (and separate) have crossed over thresholds, many times over that many people only fear crossing.  This is not negative in our life, rather it is positive, a strength builder, like this mountain in front of me.  As I began to see my life with more clarity, I began to see our strength, our light, our perseverance.  I began to see my children’s light and love and incredible beauty.  I began to see their gifts as lessons rather than feeling like “why me?” I began to believe with all my heart “lucky us”.  With this clarity I found laughter with my husband again and with my children;  lately I even find myself sometimes laughing out loud on my own.



Somedays I see myself reflected in her.  Her resiliency, her unmovable strength, her insight and ability to adapt to harsh conditions.  A few days ago, I peaked out my window throughout the day, noticing a distinctive, square window of sunlight shining upon her.  It had just rained the night before.  Camelback Mountain had a shadow cast over her entirety, like a blanket covering her curves, except for this very obvious square of white light.  The light shown on her in the morning on the West side and by the afternoon it had moved the the very East of the mountain.  At the end of the day I took my daughter in my arms and walked outside with her to enjoy the day turning into night.  Her body rested on my hip as we took in the comforting feeling of the day coming to a close.  In this moment the light shown on my face.  Just that little piece of sunlight hitting my lips, my cheeks, my forehead brought so much comfort to me.  I was overwhelmed with this feeling of love and being cared for;  I am positive my daughter felt this also.  The sunlight finding my face made me feel so beautiful and alive.  In this moment I wondered, is this also how the mountain feels when she is bathed by sunlight?  In this moment, the three of us were one and it all made sense.

My Radical Decision to End Feeding Therapy


After almost 10 years of trying to get my kids to eat, I decided to pull them out of feeding therapy.  We have been going to weekly feeding therapy off and on since my son was 5 months old.  We have seen therapists at our local hospital, therapists with years and years of experience, therapists two hours South of us, therapy at home.  We participated in a 6 week intensive program at our local hospital where my son had feeding therapy daily before school.  My daughter did vital stim daily for several weeks to teach her how to swallow. We have had moments of hope, envisioning our kids being weaned off the g-tube, being able to feed themselves, and loving food like we do.  Both my kids have g-tubes.  Both my kids struggle to eat.  I’d like to share this part of our journey with you.

I was a postpartum Doula before I became a mom.  This means I helped families in the precious days and weeks after coming home from the hospital (or giving birth at home).  I was by the sides of moms supporting them in bonding with their babies, taking time to take care of themselves and helping moms transition as smoothly as possible into motherhood.  Part of my role was to support moms in trouble shooting the challenges that can come up with breastfeeding.  So when it was my turn to become a mom, I wanted more than anything to breastfeed my baby.  I was never given this opportunity.


When Soliz was born, he was cut out of me and suddenly taken to the NICU where they took over care for him.  This included placing an NG tube, a tube that goes through his nostril and down into his stomach.  An NG tube is placed when it appears the child will not be strong enough to suck on his or her own.  One component of the genetic syndrome my son was born with is hypotonia or low tone.  This makes it difficult to breastfeed or even take a bottle for many babies born with Wolf Hirschhorn Syndrome (WHS).   We didn’t know at the time of my son’s birth that he had WHS;  we just knew that he was tiny, only 4 pounds 3 ounces (born full term).  It turns out many kids with WHS have difficulty eating throughout their lifetime.

As soon as I was able to be with my baby, I brought him to my breast.  I wanted him to know I was there with him and that I was his mom. It was clear that breastfeeding was going to be challenging for him, so I began to pump right away.  If I wasn’t able to breastfeed him, I wanted him to at least benefit from my breastmilk.  Thus began my long journey of pumping.  Luckily, within the first 2 days I was able to wean my son of the NG tube and he was able to take a normal bottle efficiently enough for us to be discharged from the NICU after our 8 day stay.  He came home from the NICU being able to drink freshly pumped breastmilk out of a bottle.


I did not give up hope that one day my baby would be able to latch on and nurse from my breast.  We saw countless specialists, speech therapists early on, lactation consultants, we even had Soliz’ tongue tie surgically repaired in hopes that this would get him to nurse.  After 9 months of trying to breastfeed, Soliz was never able to latch on.  I pumped tirelessly for him, every 2 hours around the clock.  I still barely had enough milk to give him at times.  Each bottle we gave him was work for him and us.  Drinking 2 ounces of breastmilk sometimes took him up to a half hour.

Eating is the body’s 3rd priority, only breathing and keeping one’s head up are of greater importance.

My story of my early years of motherhood and feeding my son (and later, my son and my daughter) becomes multi-layered, especially once I learned I was pregnant with my daughter around my son’s first birthday.  At that time I took my son for his first annual check up and he wasn’t gaining weight.  When we had initially come home from the hospital, he put on weight quickly.  He clearly loved being at home with Mom and Dad and my Stepson (he lived with us at the time).  Soliz really flourished on his mama’s milk and being at home.  Around 6 months old, we began to introduce solids.  Soliz showed a love for certain foods, but struggled to eat enough.  At 18 months old he got his g-tube.  Little did I know at the time his sister would also struggle to eat. The g-tube ended up being a god-send.

Three months later Camila was born at home.  She was also very tiny.  She had the same unusual long fingers like her brother.  She had a coloboma in her left iris.  She had trouble latching on to my breast immediately after birth.  In my heart I knew something wasn’t quite right.  Later on that day my lactation consultant came by to help with some breastfeeding challenges.  She immediately said:  “Camila’s palate is different. “  So instead of trying to help Camila breastfeed, we gave her a bottle.  The next day we learned that Camila also had Wolf Hirschhorn Syndrome and she was born with a cleft palate, which would make it impossible for her to get suction when latching on to the breast.  I started pumping around the clock again.  I was so crushed inside but had no time to grieve this loss.  I had babies to care for and feed. With Camila’s birth I dove deep into a world of just keeping my babies alive.  There was hardly time for any enjoyment now.  Our bonding truly suffered. I was so devastated about not being able to breastfeed that I never brought her to my breast for skin on skin bonding.

Eighteen months later, Camila also had a g-tube placed.  At first I continued to pump fresh breast milk to give to her through her g-tube.  We gradually weaned onto a homemade blended formula.  A labor of love, which I completed each night with diligence and exhaustion for almost 10 years.  I had a love-hate relationship with blending, pumping, and the g-tube(s).  Each of them had their significant pros, which kept me determined to keep going, even when I was completely worn out.  All the while, each of them had a significant con:  Exhaustion.  Feeding my children was taking up my life.  While I was trying to keep them alive and give them life, my life was slowly being drained from me.  There was no time for connecting with my husband at the end of the day or calling an old friend.  Let alone any Self-Care.*  My life had become all about feeding, pumping, blending and feeding therapy:  getting my children to eat.

Eating is more difficult than walking or talking.

For many, the concept of children struggling to eat is difficult to understand.  The truth is: Feeding Struggles affect up to 45% of typically developing children-Linscheld et al., 1995.  For my children, who were both born with multiple disabilities, Feeding Struggles affect up to 80% of developmentally disabled children-Manikam & Perman, 2000.




My main goal was to get my children to eat.  I wanted them to enjoy eating like I do, like my husband does, like their peers do.  I wanted to take them to birthday parties and have them sit with their cousins or friends and enjoy eating birthday cake.  I wanted us to sit as a family at dinner and eat together like other families do.  I wanted them to feed themselves and savor a meal that I had slaved over all afternoon.  I wanted to have a meal in public without having to pull out the extension tubes and syringes.  So we spent years and years going to feeding therapy.  We saw progress at times and at times nothing.  But we kept trying.  I was determined to see them progress.

Eating is the only bodily task that requires the use of every organ and all of the senses.

My son turned 10 this year.  In my heart I truly believe he does not need a g-tube but he is dependent on it now.  The reality of weaning him gets less and less with each year.  I always say, “if there were a terrible disaster and we were to lose all of our supplies (syringes, extension tubes, etc), I think he would survive” (as long as we had access to soft food), but my daughter wouldn’t.  She is still unable to eat any significant volume even when the food is pureed.


And then, a few months ago our feeding therapist told me: “I don’t have the skill level to continue working with your kids.”  This was the moment this 10 year journey ended.  And so it is.  Of course I spent a couple of weeks going back and forth about whether or not this was the right decision or do we try a different schedule and see if it would make a difference for the kids, etc. In those weeks of contemplating quitting, I realized, we have what we have been looking for.  It’s right in front of us.  We have a routine at mealtime.  We sit down together. The kids are happy.  We talk about our days, in the way that we do.  We listen to music and dance. In fact we do “Dinnertime Karaoke” almost every night with our own playlist.  My daughter loves it so much, she expects it and asks for it by bopping her head back and forth.  My son sings along with my husband and my daughter dances and smiles and bonds with us and we are truly happy in these mealtime moments.

Don’t get me wrong.  We haven’t completely given up hope that someday our kids will enjoy eating.  We continue to offer them bites and tastes at each mealtime, along with their tube feeding.  “My radical decision to end feeding therapy” is more about ending the search for a professional to “fix it”, to be the one to figure out how to get my kids to eat.  I have backed off on that search and have made a conscious decision to put my energy towards what is working and what we enjoy together as a family.  Someday that right person perhaps will come into our lives and be exactly the person to help my kids  learn to eat.  Maybe it will be a peer, a cousin or a friend.  Maybe it will be certain food we haven’t offered them yet.  My decision to stop the search feels so right.  To see my children for who they are and not who I hope for them to be feels like a relief.  So for now we will continue tube feeding our kids with pride wherever we go and singing “Dinnertime Karaoke” with vigor!



*I will be presenting the second part of this workshop for feeding on November 8th: “Planting a Seed Towards Self-Care”. Register below!!

The Balancing Act: Caring for Your Self and Your Child, a 2-part virtual workshop series