Birth, Death and a Pandemic Postpartum

(The birth story was written when Cruz was 3 weeks old, while the ending was written when he was ten weeks old. Now he is 4 months old.)

As a little kid I would often tell my Mom, “I want 7 kids.” 

She would smile in response, never saying too much.  (Now I realize she was probably laughing inside.)

Over time, I decreased that number. “Well, maybe not 7 kids but definitely 5,” I once told her. Now I laugh at my (maybe slightly) over zealous goal.

Tom had Aaron (who became an awesome step-son), and then Tom and I had Tate, Coral and most recently Cruz.

Now I find myself in the postpartum time period. This time following birth feels full and different­­­—full of physical and emotional changes and full of adjusting to a new normal. It is a time when our world wants new Mamas to somehow continue being who they were before birth when, in reality, a new woman is actually being born alongside her baby. Postpartum is releasing the need to multi-task—being okay with nothing getting done besides the baby being fed and all the kids being loved. Postpartum with social media is letting go of comparisons and recognizing that whatever “I think I should be able to handle and accomplish” during this time actually means nothing. It is okay to know my limits and to ask for help. 

Despite the fullness, this time period can feel lonely and repetitive. And though a new Mama has just witnessed the power of a woman’s body to grow and sustain life and then to birth this life, the postpartum time can quickly forget this, leaving Mamas to somehow feel inadequate. 

During a pandemic that shakes up everything, postpartum can be even more intense and anxiety-ridden. It can feel like a time where birth and death coexist in some strange sci-fi movie playing on repeat against a backdrop of the newest Covid-19 case rates, number of deaths and hospitalization data. Strange. Unnerving. Endless. Repetitive.

But to have a postpartum time, there must first be a birth. I love the empowering nature of physiological birth. Recently, my midwife asked me, “Which are the stories about birth that we hear?”

When I think about the stories that are told they are the ones that take place in the hospital. There is nothing wrong with a hospital birth. If a woman chooses a hospital birth, that is her story. It is certainly no less of a story, no less of a birth. However, I think that more often than not, births in the hospital are not truly chosen by women but instead they happen to women. Pitocin, epidural, and then a 30% chance of a cesarean birth. This birth fits the collective narrative we tell mothers-to-be about what to expect from birth. We hear it from our friends when they tell their childbirth stories. In our society, we seem to accept the idea that birth is not something the mother does but something that is done to her.

As an alternative to this narrative, I would like to tell the story about Cruz’s birth.  His birth is my story to tell. And it is Cruz’s story of his entrance Earthside.

Ever since I was pregnant with Tate, I loved to read and watch home birth stories. There was something about the surrender to birth, the unfolding of the natural physiological birth, that captured my attention. I visualized the birth I wanted with Tate, and it manifested in his beautiful water birth at a birth center. Two years later, with Coral, I had a very special home water birth that progressed so quickly at the end that our midwife arrived only 8 minutes before she was born!

Three years later, pregnant with Cruz, Tom and I actually decided to have a hospital birth—not because we didn’t love our home birth but because our insurance would 100% cover a hospital birth but not cover any of a home birth.  Then March hit and COVID-19 came sweeping in with its plan to undo any plans I had. Once I knew our doula couldn’t be at the hospital birth, I spoke with Tom about switching to a home birth. At the start of the third trimester, we were connected with an awesome midwife and made the decision to have another home birth. (I often try to find the silver linings in all of this Covid madness; having another home birth was certainly one of the positives to come from this pandemic.)

As my due date came and went, and Cruz felt bigger by the day, I tried to stay focused on letting my body begin labor on its own.  Each day I stayed busy (and exhausted) caring for Tate and Coral. One day shy of 41 weeks pregnant (with a recipe from my midwife), I drank a bit of castor oil. Castor oil is known to be a natural labor inducer (though it is not recommended to take it before 40 weeks and never without first discussing it with your care provider). A couple of hours after drinking the castor oil I had what I thought was an actual contraction (not just a Braxton Hicks contraction). I notified my midwife, doula and the family members who were going to come to watch the kids.  I told everyone that I would call back in about 30 minutes if the contractions became more regular. Within ten minutes, I realized that things were kicking in.  I asked Tom to call our midwife.  I texted my parents, sister and doula that they should probably come; they all were about one hour to one and a half hours away. 

At this point, the contractions were still not super intense but they were coming quickly. Sometimes it almost felt like one super long contraction with only 15 seconds in between. Because this was my third birth, I was aware that things seemed to be progressing quickly.  I had been making a lentil salad.  It did not take long before I realized that I could not focus on making the salad.  That was about the same time that I tried to sit down to feed Coral her lunch during her ABA therapy session; I quickly realized that was not going to work. I alternated between sitting on a yoga ball and standing up and leaning on the kitchen counter. At this point, we suggested that Coral’s ABA session end, so her therapist could leave.  Then, it was just Tom, Coral and me at the house. Tom was busy getting the bed ready and the birth tub set-up.  

I moved back to the bathroom and asked Tom to make me a piece of peanut butter toast. I knew the importance of eating and drinking in labor. I think there was still a part of me that thought this may last awhile. Approximately two minutes later, I told Tom, “Forget the toast. Please call Tatiana and see when she will get here.”  

That was the point when I felt my water break, and I knew it was going to go fast from there. The contractions were intense. (In labor terms, I went through early labor and active labor in about 40 minutes.  I was now in transition, which is the time when the cervix dilates from 8 to 10cm.) I tried to continue to focus on my breath, as I sat on the yoga ball through the contractions. At that point, Tatiana arrived. She came into the bathroom and encouraged me to relax my shoulders during the contractions. About one minute later I got off the ball and told Tom, “I need you now.” 

Up until this point, Tom was setting-up while attending to Coral. But now I knew I was entering the part of labor and birth when I needed him to be by my side. I walked from the bathroom to the side of the bed and hung on Tom’s shoulders through two very intense contractions. 

After those two contractions, I immediately felt Cruz moving down the birth canal. He would be born very soon. I looked at the birth tub and saw only one inch of water in it. I knew the tub would not be filled in time. I looked at the bed and couldn’t imagine laying on my back on the bed. That seemed so uncomfortable. So I dropped onto my hands and knees, draping one arm over the birth tub.

To feel this part of birth is incredible, to know that our baby would be here soon, to surrender completely to the pressure, to not actively push but rather to not resist Cruz’s downwards movement. During this stage of birth, I try to keep my mouth loose and let my body naturally move the baby down without actively pushing. After having two water births, I do believe that not being in the water makes the sensations more intense. I knew he was getting close. I could feel the “ring of Fire”, which is when the perineum is stretched out completely by his head. Intensity. And then relief as his head entered the world. At that point, it took a minute or so before I had another contraction and actively pushed out the rest of his body. 

Just like that, Cruz entered the world. Tatiana passed him to me between my legs. I held him tightly. So relieved. So full of joy. So in love.

Safe in our home. Together as a family. My birth. My way. My story. Cruz Thomas Keswick entered the world 1.5 hours after my first contraction. 

The first minutes after Cruz was born…

Cruz has been part of our family (outside of the womb) for about 3 weeks now. We are all adjusting to our new family of five (really six with our very important biggest brother Aaron). Cruz is getting bigger by the day, literally. 

During the blur of days and nights—nursing, diaper change and repeat—I find myself thinking back to Coral’s first weeks of life. I somewhat expected to have some feelings revisit me, and recently they have. When I look at Cruz and think about this time we have with him at home, I am so grateful. I recall watching Coral turn blue over and over again from not breathing during her first weeks of life. The traumatic postpartum irony of birth touching so closely to death is something you never expect to experience as a mom. The memories are vivid and the emotions are just as real. And I can’t help but think what a blessing it is to have Cruz breathe everyday on his own. To see his pink skin. Everyday I thank God for Cruz being here with us at home, breathing, growing and thriving. 

There are other emotions, too. When I watch Cruz learn things so naturally-like tracking with his eyes, turning his head to the sound of his brother’s voice, practicing holding his head up and reciprocating smiles with me— I find myself grateful, amazed and at times emotional. It reminds me of how hard Coral has worked and how much time we spent facilitating practice for her in all of these areas. I recall her being a few months old and working with her OT to help her visually track from left to right a motivating toy. Practice, practice, practice. 

It also reminds me that even when Coral reaches a goal or meets a milestone, her version always looks a bit different (from walking to playing to everything). This is not a problem for Tom or me. We are always thrilled when Coral begins to do anything new. But as Coral gets older, her differences become more apparent to others. Watching kids’ and adults’ reactions to seeing Coral move, vocalize or even have a sensory meltdown brings yet another reminder of how disability can evoke discomfort for many people. It is a glaring reminder of how far we still have to go before those with disabilities are seen as equal and valuable members of society, worthy of dignity not pity and friendship not fear. 

Fast forward to the present. Cruz is ten weeks old. He is becoming more interactive. The days are busy, as we embark on new unexpected adventures, like homeschooling. We are finding our way as a family. Coral is showing jealousy, and (oddly) it makes me happy to see her react so “typically” to her baby brother.  

I know time is moving quickly. I am trying to enjoy the moments I can, while recognizing that it is natural to not enjoy every moment of this exhausting, joyful, challenging, busy and full time. 

More importantly, I am trying to breathe, to take one day at a time and sometimes even one moment at a time. I know too well how closely birth and death sit together—whether they are separated by minutes, weeks or years. So for now, I want to soak up all of this beautiful life that I get to live with Tom and all of the life I am lucky to watch unfold through the lives of our children.

(Note: If you are looking for an amazing midwife who recognizes the importance of providing mindful and thoughtful postpartum care, as well as prenatal care, please reach out to Tatiana Koontz at Birth Waves Midiwfery. We had the same doula for all three of our births, Debbe Cannone. We have been so blessed to have her care at each birth and beyond. She is amazing!)

Pure post-birth bliss with my new love…
Big sister Coral

Privileged First Day School Photos

“Who is my first grade teacher going to be?” Tate asks a few weeks ago.

“Mrs. Keswick,” I reply.

Tate looks at me oddly.

“That’s Mama!” I say with enthusiasm, trying to make it sound far more exciting than it actually is.

Tate laughs. I laugh, relieved that (at least for the moment) he seems okay with the idea of home school and having his mom as his teacher.

As the official first day of school finally arrives for many school districts, I watch as my Facebook feed fills with first day photos. In these photos kids are cutely posed in front of their open laptops. Most look to have their own desk or work area. Notebooks and pencils sit on the side of the computer. Some kids wear headphones.

The photos are cute, a representation of this strange new type of education- Distance Learning. The kids look happy in the pictures, but I am sad when I think about how quickly the Distance Learning “honeymoon” will probably fade for kids. Once this first day excitement starts to wean and kids are left with more time on the computer and no actual in-person interaction with teachers and peers, I believe happiness will also start to wean and instead will be replaced by boredom, loneliness, over stimulation and potentially depression.

I also see a lot of privilege in these photos—white privilege and able-bodied privilege. I am not saying these kids shouldn’t have all they do—nice computers, accessible printers, reliable internet connection, private and organized work space, all the materials they could need and educated parents who can not only troubleshoot technological issues but who can also provide the academic support that is paramount to success during distance learning. These kids speak English, understand directions and can sit in front of a computer to listen to a lesson. These kids could potentially have a tutor to assist with their learning, if needed. Academically, I don’t worry too much about these kids.

I worry about the kids who do not have these resources. I worry about the gap that will inevitably grow between those who have access to all of this and those from certain backgrounds who are more likely to not have access (children of color, children from lower SES backgrounds, children whose parents don’t speak English, children who are learning English themselves and children from abusive homes).

I also worry about the kids with special needs­­­— the kids who possibly don’t have a cute picture in front of their computer on the first day because the virtual classroom is confusing and potentially overwhelming. Maybe they don’t understand what is being said from a receptive language standpoint. Maybe they can’t see the visuals presented in front of the camera. Or maybe they need to touch and feel something to make the learning connection. Maybe the Zoom commotion with teacher, students and aides is too much for them to process. Maybe the voice coming from the computer leads them to a sensory meltdown. Maybe they can’t physically sit in a chair, at a desk and look at a computer. Maybe these kids are not meant to learn in a virtual world because their gifts are ones that take face-to-face connection to be evident.

I wish I had taken Coral’s picture on her first Zoom meeting. She was lying on the floor, licking her toy. She didn’t wave hello when her teacher said, “Hi, Coral!”, even though she knows how to wave hello to people (who are actually present). She didn’t acknowledge any of the kids or aides, even though she does acknowledge people everyday with eye contact, smiles and touch. She wasn’t able to participate verbally because she doesn’t talk with words. She takes someone’s hand and takes them to what she wants (the pantry for snack, the high chair for a meal, the back door to play in the pool, a toy for help or to play).  She also uses a picture exchange system to communicate, an impossible task to implement virtually for Coral. She didn’t get to practice being in the proximity of her classmates, doing parallel play.

Beyond all of this, the teacher’s connection kept cutting out. The audio was spotty. It was actually hard for me to follow at times.

How can Coral be expected to learn anything in this odd virtual classroom?

THESE are the kids I worry about.

Most parents (and by that I mean 99.9% of parents) don’t have a child with as significant of special needs as Coral. It’s easy for her to be forgotten, for people to choose pity over empathy.  It’s easy for people to think Distance Learning “isn’t so bad” because it works fairly well for their typically developing child. It’s easy for some parents of typically developing kids to think, “It’s only a year. My kid can catch up next year.” It’s easy for us all to forget that we need equity and not equality- for our most at-risk kids to have a chance to be back safely in the classroom FIRST and engaged in face-to-face learning.

I also believe it’s easy for some people to choose fear over thoughtful analysis of data. It’s an uneasy and anxious time, making it easier to make decisions out of fear. One thing Coral has taught me is to not make decisions out of fear. We have made countless decisions for her health and well-being. Some decisions could have meant life or death: Do we stay in the hospital on oxygen or go home on hospice care? I have learned not to decide out of fear but to instead weigh the options, analyze the data and to move forward without hesitation (or regret) with a decision. Some decisions have been hard and some have required a leap of faith. Everyday I could live in fear with Coral: Will seizures return? Will she die in her sleep, like other kids with her diagnosis? Will I be able to care for her for years to come? But I don’t. I can’t live that way because it would be a joyless existence.

From what I have seen on my social media and in the news, talk about reopening the schools (in any form- hybrid or traditional) is muddied with fear, diluted with memes that don’t use facts but instead feed stubborn opinions, and embedded in a political narrative. Reopening schools has somehow become another part of “us versus them,” where open dialogue seems all but impossible.

This is a major problem for Coral and for all kids that need to be at school for at least some of the week to access their essential services (physical, occupational, and speech therapy). This is a major problem for a child, like Coral, who takes thousands of times to learn something, yet only a short time to lose the very skill she worked so hard to gain.  This period of critical brain development (the “First 5 Years” as it is often referred to) is fleeting for Coral. At four years old, this year is meant to be her second year in her special education preschool class. As of right now, she has received 2/3 of a year of preschool (last August through March).  Compensatory services that may be offered down the road by the school district (to make-up for lost services now) will never return to us this critical time of development.

We are starting to get a better understanding of the COVID-19 virus- how it is passed, preventive measures we can all take to slow the spread, best practices in hospitals to care for patients, the populations that have the highest risk of developing severe complications, and the extremely low death rate among children (one child has died in California) compared to a higher death rate among other populations. What we do not have the ability to quantify at the moment is the extreme effect on our children with disabilities (and all children for that matter, especially those who are marginalized and our youngest learners) for lack of in-person school. For years to come, we will be picking up the pieces of a generation of kids that lost critical learning time.  The WHO describes health as “ …a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”  For our kids’ well-being, we have to have an honest conversation about health as multifaceted versus only the absence of Covid-19.

Our country’s history of education for those with disabilities is long, wrought with stereotyping, full of segregation and has evolved towards more inclusive practices as a result of parent and educator advocacy, as well as advocacy by those with disabilities themselves. Those with disabilities were excluded since the beginning of the public education system, often being placed in institutions. They are the only minority group that are still (in the year 2020) segregated into different classrooms. Yes, there are options for inclusion, but they are often limited for those with the greatest needs.  And even inclusion can feel not very inclusive when it is not done well with the very best educators and supports. It has taken years of advocacy to get where we are in the education system for kids with special needs through the entitlement of FAPE (free appropriate public education), guaranteed by the Rehabilitation Act of 1973. Distance Learning is not appropriate for Coral, given that she is nonverbal and has an intellectual disability. In ways, it feels like she has (again) been forgotten.

For Coral, this year is not about making lemonade out of lemons with some cute photos in front of a computer. Sure, I try to stay positive on a daily basis. But I refuse to resign myself to accepting what the school district will or will not do. Instead, I will be Coral’s voice. I will always advocate for what I believe is best for her because I am not convinced that school districts are thinking about Coral’s unique needs. I am not convinced that public schools and their teacher unions are exploring every option to get my Coral fish back onto campus. Private preschools have been safely operating in our area for months and camps have been up and running for almost 3 months, without incident. As a county we have met the metrics to be removed from the watch list and thus should be able to open all schools with safety measure in place in one week from now (if the good data persists).  However, I do not believe that Coral’s public preschool has a solid plan or even a true desire to reopen.  I have to wonder how much of this has to do with politics, negotiations with labor associations and liability concerns, instead of the actual Covid-19 virus.

I have to hope that other parents and teachers will join me in advocating for a return to at least some in-person instruction for our children with extraordinary needs. I have to hope that the school districts will receive more funding and will then apply that funding with true flexibility, innovation and creativity to find a solution that will work for Coral and other children to receive the education they deserve and need in a safe way— to receive their free appropriate public education.

I have to hope. But more importantly, I have to advocate.

And I will always do that for my Coral fish.

 

 

 

 

The Day Coral Talked

Coral looks right into my eyes as she says, “I have a rash. I don’t like it.”

She scratches her shoulder, and then the words come again- slowly and with toddler-esque pronunciation.

“I have a rash. I don’t like it.”

My heart stops. I look at her and think- these words have been inside of her all along. I knew they were always there.

I start running around to everyone I can find. I practically shout at them, “Coral just talked! Not one word but two full sentences!” Spoken words from Coral. Joy. Pride. Gratitude.

And then I wake up.

As I lay in my bed, it takes me a second to realize that Coral’s words were a dream. I sit there with the lingering feeling of pure joy. As that fades, I think about how amazing it would be for her to say even one single purposeful word, let alone two complete sentences.

I walk out into the living room, and Tom is sitting there with Coral. I relay my dream to him, as I kiss Coral and tell her, “Good morning, Coral.” I can’t help but wonder if I will ever hear her sweet voice tell me, “Good morning, Mama.”

As the morning gets later, I go for a run. On Saturday mornings I often run in the canyon just down the hill from our house. It is more peaceful than the streets, and it looks out to an ocean view. In the rainy months it is green and lush. It is not uncommon to see coyotes pass through from one side to the other. Often hawks fly up above, circling as they look for prey.

A couple of loops into my run the tears start to flow. Over the past three years of Coral’s life I have wet the brown dirt of this canyon with many tears. I have also sent many prayers to God and the Heavens above from this quiet canyon. Today as I cry and pray, I think about Coral’s voice in my dream, the word nonverbal and the day of her diagnosis.

After receiving Coral’s diagnosis of Dup15q, two of the things that sat heaviest with me were the high likelihood of her having autism and being nonverbal. Autism scared me. Nonverbal crushed me. To think that Coral might never speak with words was devastating at that time.

While my perspective of nonverbal has changed with time and I no longer believe it is devastating, it is not without its challenges. Despite the systems we have put in place to help Coral communicate her wants and needs, Coral still has meltdowns and shows frustration. We use picture communication, but it takes a lot of practice and consistency to help her learn how to use it. For now, it is most successful during mealtimes. Cognitively, Coral still has growth to make before she can use pictures with more abstract ideas. We also use some sign language, but we have found that the motor movements for the signs can be hard for Coral to learn and recall. Still, we practice and practice. Then, we practice some more. Speech therapy. ABA therapy. At-home practice in everyday routines. We follow her lead to see what works best for her with communication. We wait patiently, while Coral shows us her path. And we always have hope.IMG_3944

Now I recognize that nonverbal does not mean without communication. Coral communicates with us all the time in her way. However, Coral’s communication could so quickly be lost in the typical world where hustle and bustle dominate most people’s daily routine, where some people talk a lot but actually say very little and where it seems like we opt for quick “likes” on social media rather than authentic face-to-face connection with others.

Coral’s communication cannot be rushed, and it requires the physical, mental and emotional presence of another person. It can be subtle and sometimes quiet, but it is always there. Without words, Coral requires me to step outside of typical communication expectations to meet her where she is- a humbling and beautiful experience. She requires that I slow down and watch, get face to face with her and enter into her space. It’s then that she will look me directly in my eyes. In these moments, even without words, she tells me so many different things.

Sometimes her look tells me, “I want more of that, Mama.”IMG_4009

In other situations when she really enjoys something, she will let out a squeal and frantically move her arms and legs. This tells me, “Give me more now, Mama.”

When she starts to hum and make sounds, she communicates, “Let’s sing more songs.”

When she takes my hand to help her do something or to have me do something for her, she asks, “Can you help me, Mama?”

If I am standing up and she finds my eyes from the carpet below, her eye contact means, “Please pick me up, Mama.”

If we are playing with a toy together and I stop and she looks over at me, she is telling me, “Keep playing, Mama. This is fun.”

IMG_4628One of her favorite things to do is to look me in the eyes and then to lift my hand up to my mouth so I will modulate the sound by moving my hand on and off my mouth. She often imitates this action and sound afterwards.

She can also tell me, “Please just hold me, Mama,” as she turns her head sideways to place it on my chest, using her hand to rub my arm.

And in the most precious of all moments, she looks in my eyes with pure love and tells me, “I love you so much, Mama.”

When I look back at her and stare into her deep blue eyes, I know she understands when I say, “I love you, too, Coral.”

I never knew that a nonverbal child could say so much.

I just had to learn how to listen.

Coral, thank you for being my teacher and for opening my eyes and heart to your very special world.

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Tate, Tell Us About Coral

To start things off, here are a couple of birthday related stories about Tate and Coral.

This week as Tate, Coral and I drove home from one of Coral’s therapy sessions, he told me, “I need to get Coral a birthday present.”

“Yeah, that sounds good. What do you want to get her?” I answered.

Tate quickly said, “Mom, I can’t say that now,” as he looked over at Coral.

“Oh, okay,” I replied.

I quietly laughed to myself. From everything I know about Coral, I can be pretty confident that the concept of birthdays and presents (and the receptive language for those words) is still beyond her scope of understanding. But Tate did not know that. Or maybe he did but still wanted to honor the “birthday code” of not talking about presents in front of the birthday girl. Either way, I love it.

About a minute later, unable to hold it in, Tate said, “I think I want to get her something with music.”

“That sounds perfect,” I commented.

It was the perfect gift idea. He knows Coral so well.

When the day of her very small family birthday party arrived, Tate came into Coral’s room dressed for the party.

He announced, “I’m wearing my Dup15q shirt because this is Coral’s special day and Dup15q is her special thing.”

I could have cried.

I spared Tate my emotions and instead said, “Wow, Tate. That was very thoughtful of you.”

Tate is a beautiful mixture of active, wrestling, jumping, unpredictable energy and pure, sweet, sensitive and thoughtful five-year-old boy.

He started talking the minute he left the womb; the pediatrician in the birth center honestly said, “You have a talker.” And he has never stopped talking. He spoke in complex sentences by his second birthday.

On Coral’s third birthday, I thought it would be fitting to share more about Coral through Tate’s eyes. Tate knows Coral as well as Tom and I.

After I explained what an interview is, Tate requested I interview him about his LEGOS. So, I will begin the interview with a couple of LEGO related questions.

Tate, if you could build any LEGO creation, what would it be? Why?
I would build a transformer because I want to.

If Coral could build any LEGO creation, what do you think it would be? Why?

Uhh, she would eat the LEGO. (Very true, Tate.)

What do you like to do with Coral?
I like to play with Coral the game she is doing. She just likes to do funny stuff. (Coral loves spinning around with her head back, while giggling uncontrollably.)

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What makes you proud of Coral?
When she claps. (She has worked very hard on learning to do that and loves to do that now.)

I am proud of Coral when she walks, too.

Are there some things that you think are hard for Coral to do?
Yeah, walking. Because she needs a little more time to practice and do it. It’s a little hard for her to eat food with her spoon because she makes too big of a bite. Sometimes she spills half of the spoon.

I want to teach Coral how to talk.

How do you help Coral?
I help her if she drops a toy and she wants it. I give it back to her.

What are Coral’s favorite activities?
Humpty Dumpty! She likes to go high up on your (Mom’s) knees and then your knees go down.   (When we sing “Humpty Dumpty,” Coral sits on my bent knees. When I say “had a great fall,” I straighten my knees and she drops down. I think she would do this all day.)

IMG_4050 She loves “Doe A Deer”. She likes her giraffe music toy.

Is there anything you worry about for Coral?
I worry about Coral getting her IEP. Is that a shot?

(Wow, I sometimes forget how much Tate picks up on and listens to. This summer we have been doing a lot of assessments. Last week we finally had Coral’s first IEP meeting (Individualized Education Plan) because she will start preschool in 3 weeks through the school district. After he says this, I explain to Tate that an IEP is just Coral’s plan for school- where she will go, what we hope she learns, and how we will help her learn. I tell him that he doesn’t need to worry about this.)

I worry about Coral going to school because she might fall on the pavement her first day there. (Yes, that’s why she has a helmet and 1-on-1 aide.)

What is it like to be a big brother?
Uhh, it’s like milking a cow. It’s so hard. On your first try you mess up. It’s so hard to take care of baby sister. I learned how to do it.

(Tate has never milked a cow, so…? I do imagine it can be hard to be a big brother sometimes.)

If you could be an animal, what would you be? And Coral? Why?
A cougar because I want to be able to climb trees how good they do. I’m really stealthy and agile.

Coral would probably be a giraffe because she loves her toy giraffe. Maybe because she wants to eat leaves and have a really long neck.

What are some things Coral does really well?IMG_0387
Swimming! She does really good because she doesn’t drown. She puts her head under and blows bubbles.

What do you want people to know about Dup15q?
I want people to know that Coral has special needs with Dup15q. She also needs to learn really good. And Reid’s brother has Dup15q. Sawyer has Dup15q. She is learning how to talk.

Is there anything else you want people to know about your sister?

I love her.

 
I always joke with Tate and Coral by saying, “Okay today you are turning 3 years old, but after this there are no more birthdays.”

Tate is always quick to shout, “No! Coral is going to turn 4, 5, 6, 7, ….”

“What???” I reply with shock. Then, I pause.

As Tate comes up with his response, I say with a smile, “You’re right. I’m just kidding.”

And I am just kidding. Of course, I want Tate and Coral to grown and learn. But I do hope that Tate and Coral never lose the ability to be so present in the moment and so unapologetically authentic- free from the need to be any way except exactly as they are.

Thank you for sharing about your sister, Tate.

Happy 3rd Birthday, Coral! We love you!

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Why I Can No Longer: “Grieve The Child I Thought Coral Would Be”

In the early days and weeks after Coral’s diagnosis, some of the only words I could find were, “I grieve the loss of the child I thought Coral would be.”

These are words that few parents will ever understand.

It is a phrase that is filled with big emotions, expectations and perceptions. There is no getting around how living the rare life (1 in 15,000) in a society that is often uncomfortable with difference is challenging in a variety of ways.

When society paints parenthood in the typical, parents of children with special needs are often left without a road map. Everything feels so different. The parenting ego finds itself in unknown territory.

Many parenting messages seem to portray parenting as a completion of the parent through the child. I realize that Coral and Tate do not serve to fulfill my expectations of Motherhood. Rather, their lives are uniquely their own. I no longer frame Coral against an imagined Coral of pregnancy- full of expectations. I see Coral for who she is.

Now I see that the words, “I grieve the child I thought Coral would be,” have never actually been about Coral. These words have always been about everyone and everything else that makes me feel like Coral should be a certain way. Coral has always been exactly who she was meant to be.

So, I do grieve. But I do not grieve for Coral.

I grieve for a society who thinks that special needs parents should grieve.

I grieve for people who think that Coral’s life is less because of her challenges.

I grieve for the people who say, “I’m sorry,” after I share about Coral’s developmental differences. I know that intentions are often good, and people are lost for words. But I am no less sorry that my daughter is who she is than another parent is “sorry” that her child is who she is.

I grieve for people who disguise their discomfort with disability through pity.

I grieve for the parents who tell their kids, “Don’t stare.”

I grieve for certain aspects of the therapeutic model of intervention that tell me through whispers and nudges that Coral somehow needs to be “fixed.”

I grieve for the times I get so wrapped up in goals and progress that I forget to see Coral for the beautiful little person she is becoming. I grieve for how difficult it can be to find a balance between hours of weekly therapy and just letting Coral be.

I grieve for an educational system that in the end still requires my Coral fish to prove that she can be included in a classroom with typically developing peers. If her behaviors or needs are too great, it is suggested that she be placed in a separate class. I grieve for people who do not see that this is still an injustice and a disservice to ALL of our kids.

I grieve for those who do not realize that there is never an excuse for exclusion of those with disabilities in the community, in schools or at events. I grieve for those who choose exclusion over inclusion because it is neater, simpler, easier and more comfortable.

I grieve for a society that calls us to compare our children, our families and our lives. I grieve for the joy that is lost in such comparisons.

I grieve. But I refuse to grieve for Coral.

Coral is finding her way. The road can be extremely bumpy, but it is her road, her path. Coral has always been exactly who she was meant to be. Her life is not mine to grieve. Rather, I choose to celebrate a life that fought harder than most to get where she is today- to be alive, growing and developing. I celebrate a life that beat the odds- 47 chromosomes worth of rare.

 

Some of my favorite moments are the ones when I sit with her on the couch in the early morning, looking out the window onto our backyard hill. Everything is so quiet. The noise of the world- that tries to tell me what I should or should not feel about Coral’s life- is silenced. The perceptions, perspectives and expectations disappear.

Sometimes Coral looks deep into my eyes, studying me closely, as if she is discovering things about me that she has never known. During these moments, I find that I can finally see Coral for who she truly is.

When the noise of the world is gone, there is finally space for truth and authenticity.

And the only words I find are, “Oh Coral, you are so perfect.”

 

“I’m not in this world

To live up to your expectations

Neither are you here to live up to mine.

….

Don’t underestimate

My ability

Don’t definite my character

Don’t belittle my authority

It’s time you recognized my quality.

 

I said, I am that I am

I am, I am, I am.”

-Peter Tosh

“I Am That I Am”

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From Ableism to Inclusion (Part 1): Helping Kids Develop an Inclusive Mindset

On Tuesdays Coral, Tate and I enter the hospital to attend Coral’s speech therapy. Each week Margery greets us with a big smile. She is a 97 year old hospital volunteer.

Margery says, “Hi Coral. Hi Tate.” Many times Coral does not turn to look. Instead, she buries her head into my shoulder. It’s a busy hospital entrance. When Coral does turn and look, I help her to wave.

Tate cheerily responds, “Hi, Miss Margery. Look at the LEGO I built.” He proudly holds up his newest LEGO creation.

Every week Margery says, “You have a beautiful family.”

We have spent a good amount of time talking about her life- her many kids, grandkids, and great grandkids (the youngest of whom is 26!). After many weeks I have never spoken of Coral’s differences- Dup15q or the associated characteristics of autism spectrum disorder.

One week Margery asks, “How old is Coral?”

I reply, “Almost 3 years old.” I follow this up with, “She does things at her own pace.”

Margery replies with a smile, “Well, don’t we all.”

I smile at her words. So simple. So true. So quickly forgotten by most people.

I wish everyone could so comfortably be like Margery- inclusive and accepting. She chooses not to view Coral through the eyes of ableism. Ableism is discrimination and social prejudice against people with disabilities. Ableism is pervasive in our society. It is present in people’s thoughts, words and actions- a result of what people believe gives value to a life. In our society, intelligence, success, wealth and power are often seen as the cornerstones to a happy and fulfilled life. As a result, the life of a person with a disability (especially an intellectual disability) is often viewed as less, possibly even worthy of pity.

Ableism is used (without most people even realizing) as an excuse for exclusion. This happens everyday and in all environments. It is everything from the casual, thoughtless comment about someone with a disability to the purposeful, hurtful comment or action of exclusion.

Ableism is one of the largest roadblocks to inclusion for Coral and other kids with disabilities, including autism. It is so unconsciously accepted in our society that people do not even realize that they are a part of the problem. I know that I didn’t.

I often feel like parents have the potential to be the best (or the worst) example to our future generations. In my opinion, what we model for our kids today paves the way for the future generation to rely less on ableism and more on acceptance across interactions with all people, regardless of their abilities or disabilities.

Here are a few things we can do to help kids develop an inclusive mindset unbiased by ableism.

1. Promote positive interactions (play dates, casual exchanges in the community, interactions at school, etc) between kids of all abilities. Do not taint the interaction with your own discomfort, perceptions and stereotypes.

One day I was waiting in line behind a mom and her daughter to check Coral into her therapy. There was a friendly young man in a wheelchair next to us. He often is in the waiting room when Coral and I are there.

He was telling everyone in line about his shoes. “I have new shoes.” His speech was a little difficult to understand but his gestures helped to bring meaning, as he raised his shoe and pointed to it.

I said, “Oh yeah, I see them. Those look nice!”

The little girl, about 4 years old, in front of us was looking at him. Before she could say anything (or even think anything) her mom said, “You can say hi, but don’t stare.” After that, the little girl turned away from the boy and stood by her mom.

With two (most likely) well intentioned but ignorant words- Don’t stare– this mother made something out of nothing. She created a difference and a separation that did not have to be there. She placed her discomfort on her daughter and began to teach her that natural interactions cannot occur with kids who do things differently.

Letting kids interact on their own terms with kids and adults who act differently than expected, allows kids to create their own experiences and to form their own perceptions based on (what will likely be) positive experiences. As parents, we can follow-up social exchanges with conversation.

2. Talk openly with kids about disabilities and differences. Encourage kids to ask questions and to express their feelings, including any confusion.

As Tate grows older, he has more questions about Coral and kids with disabilities.

Questions are important. Conversations teach understanding.

After Tate plays with a nonverbal child or sees a video of a friend’s nonverbal child, he may ask me, “Why doesn’t Joe talk?”

Usually, the conversation we have goes something like this: “Everyone does things differently. And that’s okay. Some people communicate in ways without using words, like signs or pictures, like Coral. But if you watch someone closely you can usually get clues into what they are trying to tell you.”

As kids grow and learn, they experience cognitive dissonance in certain situations. When kids receive new information that challenges their existing beliefs they may find themselves in a state of cognitive dissonance or disequilibrium. They are motivated to better understand that which is causing confusion.

Currently, Tate is in a state of cognitive dissonance surrounding his understanding of Coral’s age and what she can and cannot do. Tate has been observing how infants and toddlers much younger than Coral can already do things that she struggles with. He may say, “Baby Jill already walks so good.” Or he may share, “Liz is two and she can already walk and talk.”

I usually respond with, “You’re right, Tate. Most kids do walk and talk when they are two years old. But not all kids. Some kids, like Coral, need more help to do these things. And that’s okay.”

I cannot “fix” his dissonance, as he develops his perspective on why some kids move, talk and act very differently than most other kids.

In order for kids to develop empathetic and inclusive mindsets, they have to be allowed to experience cognitive dissonance. When they look outside themselves for a way to build understanding, parents and community members can be models in their comments, attitudes and actions towards people with disabilities. For us to be positive models, we first have to recognize our own ableism- the perceptions and stereotypes we carry with us about people with disabilities.

3. Emphasize equality among all people in ways that relate to kids.

Age is very important to kids. When a group of young kids get together, they often ask about ages before names. For kids to view a child with a disability as an equal, it is important for them to know her age- specifically that she is not “still a baby.”

Tate recently saw a boy in a wheelchair with a tracheotomy and a G-tube who was playing with many of the toys Coral enjoys (infant toys). Tate was staring. I could see in his eyes and in his expression that he was confused by the boy’s behavior. Later, he asked, “Why is that kid still a baby playing with baby toys?”

I replied, “That boy was 10 years old. He needs help to do a lot of things that you do without help. But that doesn’t make him a baby. He is still 10 years old and likes to play with toys, like you do. He just likes to play with different toys than you might choose. And that’s okay. Everyone does things differently.”

It is important for kids to understand that other kids who don’t walk, move or talk in the way we might expect them to- given their age- are not babies. Equality helps kids see value and worth in all life. Equality is important to breaking stereotypes.

 

Before Coral was born I probably would have been very uncomfortable in all of these situations. Tate would have sensed my discomfort. I would not have known what to say.

As adults, it’s okay for us to not know what to say. I certainly do not know what to say in every circumstance. It’s also not wrong for us to feel certain emotions. However, it is not okay for us to teach our kids to feel the same way we do.  If we do that, we are perpetuating ableism. We must recognize our own emotions, the reasons for those emotions and then give kids space to experience the situation in their own way. This is the only way to break the pervasive cycle of ableism and the accompanying devaluation and exclusion of those with disabilities.

When we received Coral’s diagnosis of Dup15q at 3 weeks old, there is only one person who was not covered in a dark haze of perceptions, changed expectations and stereotypes around raising a child with a disability. That was Tate. At 27 months old, he did not have expectations or labels for disabilities. All he saw was his baby sister- “Baby Curl.” He was so proud to be a big brother.

He has formed a relationship with his little sister in a way that works for both of them. It is different from what Tom and I expected, but it is certainly no less valuable. When he looks at me with wide eyes, beaming with pride, and says, “Mama, look! Coral is walking so good,” I see pure acceptance and unconditional love. Coral is his sister, nothing more and nothing less.

Ableism should take a lesson from Tate, other kids and people like Miss Margery. Only then will we be able to create a more inclusive society for everyone.

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Warrior Mama, You are a Rock Star

Warrior Mamas (and Dads), everyday you do things for your child that other parents “couldn’t imagine” doing. Most of the time you don’t think about the time and energy it requires to meet your child’s very special needs. You simply do what must be done out of love: hours of therapy and medical appointments, providing education in the face of ignorance and fear, parenting with the physical intensity an infant requires even though your child is far older, and supervising your child with a level of vigilance unknown to most (across all environments and all ages). While others may not recognize the miraculous feats you perform on a daily basis (and you probably don’t either), I do.

Warrior Mama, I want you to know that you are a rock star.

When you find yourself in a conversation about potty training or other milestones with parents of “typical” kids, you try to listen and be engaged. Part of you wants to be included in discussions with other parents, even though another part of you may seek space and peace from a conversation that serves as a reminder of the challenges your child faces.

When the conversation turns to typical parenting challenges, you try to be empathetic, though you struggle with how different your perspective is when it comes to challenges during parenthood.

Warrior Mama, you are a rock star.

At play-dates with “typical” kids, you often choose to forego sitting with the other moms because the only way for your child to participate is if you are there to help initiate social interaction and play, or to help your child navigate the environment from a gross motor perspective. This can feel lonely on the best days and heartbreaking on the worst.

When people use a phrase, such as, “God only gives special kids to special people,” you often choose to graciously smile. I know that you may want to reply with, “How does it feel to know that God doesn’t think you’re special?” But you don’t.

Warrior Mama, you are a rock star.

On the days that knock you down and leave you on your knees and crying, you get right back up. No one would know because you ride the pendulum swing of emotions like a professional trapeze artist, with grace and finesse.

Even when certain moments out in the community catch you by surprise, resurfacing grief and sadness, your recovery is almost immediate. There may be a few tears behind sunglasses and then you’re back- ready to be a mom, therapist, teacher, and hero to your little one again.

Warrior Mama, you are a rock star.

When you overhear ignorant and hurtful comments about those with disabilities, you choose your words and actions carefully. At times, you choose to educate. Sometimes you choose to ignore.

When society wants to exclude, you fight for inclusion for your child and all those who move, think, and act differently than what society has determined to be “normal.”

Warrior Mama, you are a rock star.

You are no stranger to receiving unexpected diagnoses and labels for your child- some that you did not even know existed. While the news weighs heavy and carries many emotions, you also know something that most people do not know; no matter what labels your child is given, she will always be your child first. You have learned to forge a path through any circumstance.

You house has medication and other reminder alarms going off like it’s the background beat to the next hit song. Somehow you find time to do all “typical” parenting plus give medication, find new recipes for your child’s special diet, research sensory toys, implement a communication method for your nonverbal child, have patience through sensory meltdowns, and distract your child from licking the glass door for the hundredth time that hour. You would expect to have a clone of yourself by now. Unfortunately, you do not.

Warrior Mama, you are a rock star.

Other parents find solace in knowing that the exhausting physical parenting of the infant and toddler years will pass. They reassure each other by saying, “Your children will not need you like this forever.” Instead, you decide to find peace in taking one day (or sometimes one moment) at a time. You don’t know what the future holds.

Warrior Mama, you are a rock star.

Warrior Mama, the thing that most people don’t know is that you experience a type of joy that is foreign to all but a few parents- a joy that raises your heart to a truly special level. You celebrate what may seem to others as small accomplishments; you know how hard your child has worked, and you know better than to take any developmental progress for granted. You let your child lead. You know in your heart that your child’s life is not your life; she is free to be exactly who she is meant to be.

Warrior Mama, you are not only a rock star. You are strong.  You are courageous. You are needed. You are loved. Everyday you are a hero to a child who may never say, “I love you,” but who shows you love in the most incredible ways.

When I spot you at the playground, playing with your child in her own way (maybe she is near Coral who has her tongue out and head back- catching the wind), I smile and whisper, “Rock on, Mama. Rock on.”

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Coral is Off the Charts

A report from a developmental assessment for Coral arrives. I open it and begin to read over the results. I come to a chart. The chart has standard scores for each area of development (physical, adaptive behavior, social-emotional, cognitive, and communication) listed on one side and corresponding percentiles- as compared to kids of the same age- on the other side. I scan down, down, down on the chart. I find Coral’s line- a zig zag connecting the dots that show her percentile in each area.

Coral is off the chart.

I sit staring at the paper. Emotions rush in. Thoughts race through my head, as tears run down my face.

After awhile, I reflect: Why do I feel so sad?

Yes, these results remind me how hard Coral has to work to learn every new skill, of the challenges Coral and our family face on a daily basis, and of the exhaustion and loneliness I often feel at times on this long journey.

But, I am not sad that Coral is who she is.

I feel sad because I know that some people will never see Coral for who she is; they will only see these results. The results do not tell us about Coral. Rather, they illuminate society’s narrow parameters for development along a fixed linear progression.

I feel sad because we still have not come up with an alternative way to ascertain what Coral (and kids who are similar to her) know. The tests currently used are created for typically developing kids; they continue to try to determine if my Coral fish can climb a tree.

I feel sad because Coral was born into a world that struggles to see her life’s value. This is a world that wants to quantify her life and compare her to others.

I feel sad because I know that our family will always have to advocate for Coral’s place in this society- for her inclusion.

I feel sad for the people who will never allow themselves the opportunity to get to know Coral; instead, they will let their perceptions and fear of disability dictate their thoughts and actions.

I feel sad that this test requires me to compare Coral to other kids her age, when there is no comparison to make. Coral is uniquely herself, making progress in her own way and on her own timeline.

In so many ways, Coral IS off the charts.

The way Coral sees and interprets the contrasts of colors- both in artistic designs and in the combining of shadows with light- is unlike anything I have seen from a two-year-old. With focused and curious looking, she explores the designs with her whole self.

Coral feels the vibrations of music. Not only does she listen, she places her ear against the music to feel it. When tones change, she smiles. Through music, she finds presence in the moment.

Coral is off the charts.

Coral works harder than any two-year-old I know to learn things. She never gives-up. When walking, she still falls countless times. She always gets back up.

Coral is highly motivated to learn. With the right motivation, she demonstrates unbelievable skills.

Coral is off the charts.

Coral’s abilities in the water are nothing short of amazing. She floats on her back, holds her breath, spins, and moves with ease in the water.

When she sees the ocean, she rushes towards it- seeking the sensations of both the salty water against her skin and the whitewater push from the incoming waves.

Coral is off the charts.

Coral loves unconditionally- her dad, her mom, her brothers, her grandparents, her aunts and uncles, and her cousins. She never asks for anything in return for her love. She never requires others to be any way except exactly how they are.

Coral is off the charts.

Some of the beauty Coral brings to this world is in her ability to be content with exactly who she is- on or off the charts.

She reminds us that fulfillment and happiness in life are not a result of being on or off the charts. Rather, Coral finds these as she strives to be her best self every single day.

Coral is off the charts.

 

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Reimagining Coral’s Future: Life Without Limiting Labels

Learning about a child’s rare diagnosis is kind of like being thrown into a stormy sea without a life vest- it’s a cold, dark place, and there is a real potential for drowning. Drowning in grief. Drowning in worry. Drowning in stress. Drowning in exhaustion.

Often the first things that are learned about a rare diagnosis are the seemingly inevitable challenges, struggles, and clinical labels. When both society and parents interpret these labels, the result is often perceptions, stereotypes, and limits on what can be achieved by a child. Coral received her diagnosis of Dup15q at 3 weeks old; in many ways, this was when she was put into an achievement box by society.

With Dup15q, some of the first things I learned were: Many kids have seizures (often difficult to control ones). Gross and fine motor challenges can be significant. Intellectual disability can range from mild to profound (depending in part upon the type of duplication). Many kids are on the autism spectrum and experience speech and language delays. It is not uncommon for expressive language to be absent or poor.

Translated into clinical labels this would be: epilepsy, global developmental delay, intellectual disability, autism spectrum disorder, and language disorder.

After learning all of this, I had several questions: Will Coral ever be potty trained? Will Coral ever talk? Will Coral ever read? What will Coral understand about the world around her? Will she need supervision and assistance for her whole life? What will her life look like? What will our family’s life look like?

To top it off, I learned that it is not uncommon for kids to lose previously learned skills (walking, talking, eating), as a result of severe seizures and the side effects of the accompanying medications. That was when this rare diagnosis looked me in the eye and said: How do you like them apples?

Now I will pause…Just think about looking into the tunnel of that diagnosis with a newborn at 3 weeks postpartum.

So, this is how it all started. Labels, perceived limits, and grief. To start to move forward on this totally unexpected path, I chose to be cautious in my expectations. (I mean look back at that list of labels Coral was likely to acquire.) I did not want to dream too much. I could not handle being crushed again. Of course, I wanted Coral to have the best outcome possible. But I didn’t say it out loud. I kept it to myself- in fear of making myself too vulnerable.

Now, inspired by the article, “Parents of Children with Developmental Disabilities Aim High,” I have decided to write down my hopes for Coral’s future. I know that my vision for Coral’s future is only my vision. Coral’s life is her own. Her path is a result of what we do as a family, but it is also a result of what she pursues and whether or not she faces certain medical issues in the future. Her path will also be a result of what society can or cannot accept about difference- the place there will be for her in the world.

I am dreaming big. I have big hopes for Coral, our family, and all of society. So, here it goes…

I have always said that I want Coral to be able to communicate, no matter what that looks like for her. And that is true. But I still hope that one day she talks using her own words. I can see her talking to communicate her preferences and her desires. Sometimes she talks to just be her happy and silly self- to share a part of herself with us. I cherish the sound of her voice and take no word for granted.

During her school years, Coral is happy and proud of her accomplishments. She is included and valued at her school and in her community. Coral’s class is diverse- full of both typically developing kids and kids with special needs. Every child has different abilities and disabilities. Teachers are granted the time and flexibility to guide kids in learning how to relate to other children who move, think, and act differently than expected. The academics come behind the humanity. I don’t expect typically developing kids to abandon all things typical to share every moment with Coral, but I see them taking some time to share in moments with her in her way. I see them taking time to get to know her. I see these kids learning as much from her, as she learns from them.

Coral loves the water and the beach. As she grows up, she learns how to swim. She plays, happy and carefree, in the sand and the water all summer long. Yes, she surfs (maybe tandem) with Tom, Tate, Aaron, and me.

As Coral becomes a young adult, I see her living somewhere where she has friends (maybe even a best friend). She has people who live with her who help her to accomplish her day’s goals. I see her working at something she loves- maybe with animals or around the water. She is involved in the community on a daily basis, not hidden away in the back of some business but in the front, meeting people and forming relationships. I see her attending college, if it is something that interests her.

Medically, if Coral’s seizures return, CBD oil and diet modifications work to control them. Also, Coral has access to a life-changing treatment (the result of the Dup15q Alliance’s research) focused on one or some of the specific genes that are duplicated.

As a family, we are unified, patient, mindful, and loving. Tom and I grow stronger, as we learn how to communicate effectively with each other through the stressful times. We have faith. Tate is a resilient, compassionate young man and a caring big brother. Aaron is a wonderful example to his little brother and sister. Everyone in the extended family loves Coral. She has her place at all family gatherings.

When I read over my hopes for Coral I find they are similar to what Tom and I hope for Aaron and Tate- health, happiness, and fulfillment through following their dreams. Coral may take far longer to accomplish some things, but ultimately if she learns to do something (even if it is marked by her own style), that is what matters. It is not a race.

Already being two years into the path, I also know that accomplishing these dreams will be the result of massive time and energy investments. Helping Coral to achieve whatever level of independence she can will take more work than most parents could fathom.

At the same time, I know to achieve this vision, I must release this vision and accept what comes to pass each day. Struggling against what is present in order to help her accomplish skills on my timeline takes away from the beauty and peace I envision for Coral and our family.

I also know that society has to step up to help make this possible. My vision has no space for fear and discomfort around disability. Parents, doctors, educators, therapists, and business owners need to be examples to the next generation of children of how to include and value people of all abilities.

The key to reimagining Coral’s future free from limiting labels is living as a family and a society with open eyes, open hearts, and mindfulness.

It truly takes a village. Let’s make this happen!

 

Please consider donating to the Dup15q Alliance on Giving Tuesday (November 27, 2018) or on any day. They have made a positive difference in not only Coral’s life but also our family’s life.  (On Giving Tuesday, donate through the Dup15q Alliance’s Facebook page to have a chance for Facebook to match your donation.)

The Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2 – 13.1 duplication syndrome.

Donate to the Dup15q Alliance here

Thank you!!!!

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Being Special in a Typical World: Joy, Grief and Struggle

1 in 10,000 to 15,000. That sounds like impossible odds. It isn’t. No one expects to find themselves as a member of the few. As rare as special is, it actually occurs everyday in some way. Still, special can feel so different.

This typical world has a hard time with special. I encounter a lot of fear and ignorance around disability. Many times when people hear a label for a child, like autistic, all they know are some stereotypical behaviors- flapping hands, averted eye contact, rocking back and forth, covering ears or licking objects. Instead of seeing the behaviors as a way to learn about the child and how to help her become her best self, they choose to see the behaviors as the child herself.

For as much as some people have the intention to accept everyone, there is a comfort in typical, in having the child who sits and does what is expected. When a child is outside of the comfort of typical, when she is special, it is more difficult to see her, to relate to her, and to build a relationship with her. It takes far more patience, time and dedication.

For Coral and our family, we spend everyday in this special space, due to Coral’s diagnosis of Dup15q. Special can isolate in certain situations, while it unifies people with shared challenges. It is a place where life can feel totally unsettled, yet simultaneously perfect. It is the worst heartache and grief coupled with the purest joy. It is one of life’s juxtapositions- being special in a typical world.

I have learned that getting to know special is an incredible and exhausting experience.   It brings us outside of typical. It joins challenge and grief to joy, a reminder that life is a mixture of both of these. It teaches that inner strength can be a bridge from heartache to happiness.

Some of those joyous moments are in the inchstones and milestones. Of course, it is a thrilling moment when Coral reaches a milestone. But no less amazing than the milestones are the inchstones Coral reaches. Inchstones are the stepping stones to the larger milestones. They are not promised to Coral. They are the result of her hard work and persistence in learning something that does not come easily to her. I can vividly recall the where, the when and the how of these seemingly small accomplishments that are so huge for Coral. When Coral does make these strides and reach these goals, I am fully present in the moment. Purely, completely, and joyfully.

I remember Coral’s first smile as an infant; her eyes did not meet mine, but her smile was big and full of happiness. Many weeks after, I remember the first time she looked deeply into my eyes to connect with me. I remember the first time she engaged in joint attention; she was so excited about playing with a new toy, she looked over at me while smiling to share her joy with me. I remember the first time she imitated Tate; he banged on her high chair table, and she banged back. I remember the first time she played with a toy (other than a cause-effect music toy) functionally and with purpose- dropping the ball down the chimney, so it would come out the door of the house. I remember the first time she saw me from across the room and reached her arms out towards me. I remember the first time she walked to the front door to “greet” Mimi and Dziadziu. I remember the first time she took my hand to help her move a “slider” in a book. I remember the first time she imitated my vocal play. I said, “Mamama”. I waited and waited. Her little lips started to move without any sound and then, “Mamama.” I remember the first time someone called her “smart.”

These moments of amazing accomplishment would not create such joy, if they were not countered by moments of grief, anger and sadness. It is this other side that brings perspective to Coral’s special development. Some of these moments are challenging medical situations. I remember when Coral was lying on the couch next to me at 3 days old, blue and not breathing. Home alone with her, I called 911. I remember how every test in her first couple of weeks of life (except her EEGs) came back “normal,” and how I felt hope with each returned test. And then I remember the moment when Coral was 3 weeks old and two doctors walked in and said, “We found something in the genetics.” I remember the worst apneic event Coral had at home. I can see Tom holding the oxygen bag, repetitively pumping the bag to supply her with oxygen. I thought she was going to die; I can see her blue-gray face, her not breathing, and then her labored breathing. I see myself, kneeling on the floor between my sister and Tom, over come with primal emotion, yelling and sobbing, “No! My baby girl!” I remember nursing her before bed when she had her first cluster of infantile spasms; her body tightened and her eyes averted up and to the side, while my heart dropped to my stomach.

Beyond these times of medical issues, there are moments everyday when life bumps into me. During these times, I am humbly reminded how special and different Coral’s life and our family’s life is. These are often the moments when special can feel lonely. I remember being at a birthday party when a group of moms started to talk about the “next generation” (the little sisters of Tate’s group of preschool friends) who would attend the same preschool. I remember wondering what I should explain about why Coral would not be attending that school, or if I should even explain. I remember the first look of pity I received after sharing Coral’s diagnosis. I more clearly recall the first look of fear I saw in someone’s face after talking about Coral’s challenges. I remember the first time someone made a thoughtless and hurtful comment about special needs kids in front of me. I remember when Tate asked Tom and me, “Will Coral talk when she is older?”

I will never forget any of these moments. They have come together to create the fabric of our family’s very different and special life. They also are the teeter-totter of this life. Those moments of incredible joy would never be so full if it weren’t for the moments of grief and sadness. The challenges are what have made the highs so high. It is the daily struggle that brings a new perspective. It is the struggle that allows me to see each person through new eyes- to wonder what their own struggle may be. It is the struggle that reminds me to give thanks.

This is a world full of hate and fear, but with a larger potential for love and faith.  As Coral begins to spend less time with me at home and more time out in the world at other activities, I wonder which world she will find. As her differences become more evident with age, how will people treat her?

I have to hope that the world will want to accept Coral’s special exactly as it is- not as something to fear but rather as something to embrace. I have to hope that adults will see the value to both themselves and their typically developing kids in including children and adults with disabilities in every part of society. I have to hope that in some way special will have its place next to typical.

Special is where life’s wonder resides. Through Coral, I have found my special in this typical world. I’m holding on tight because this is destined to be a wild ride.

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