Wholehearted Parenting Through Disability – A blog about the challenges of being a wholehearted parent to children with differing abilities

January 24, 2020January 24, 2020

Surgery #1

Ana had her first surgery on January 7th, 2020 in order to get her into halo gravity traction. In case you are unfamiliar with this surgery, it is a relatively short procedure, approximately 20 minutes, in which a series of ten small holes are made in the skull and 10 screws are then screwed into the bone. The screws attach to a halo that is also attached to a piece of metal that hooks onto a carabiner which is connected to a rope pulley system that applies resistance to her halo.

She has to be in traction for at least 8 hours a day at the amount of resistance that is half of her body weight, which for Ana is 12.5 lbs. The purpose of the halo gravity traction is to prepare her for her big spine surgery in March. Since Ana’s spine is dislocated and it is compressing her spinal cord, it would be very dangerous for Ana’s surgeons to try to move her spine at all to reduce the degree of her curve when they did her surgery. Any change applied to the spinal cord like that would just injure her spinal cord even more and cause major damage. However, in halo gravity traction, gravity is used as a tool to gently stretch her spine and reduce the curve slowly over time. As a result of Ana’s dislocation, her spinal cord has a finite area in which it can function. The traction relieves the pressure her bones are putting on her spinal cord, which will eventually allow the spinal cord to form more blood vessels and begin to strengthen. Our doctors believe that this will create a much more healthy spinal cord so that when they do her surgery, she will have less of a chance of spinal cord injury and complete paralysis. As of now she is considered an ambulatory paraplegic, as she is able to walk with the assistance of her walker. Her surgeons have informed us that she is at high risk of complete paralysis with her upcoming surgery because of the way her spine looks now. However, if we do nothing her curve will eventually progress to the point where she would be completely paralyzed anyway. We are taking a risk by doing this aggressive series of surgeries, but we have determined that it is a risk we are willing to take, given that even if we did nothing she would be completely paralyzed at some point. Her dad and I have always known that complete paralysis was a possibility, even a probability, but we also know that she has the potential to live a happy and fulfilling life with or without the use of her legs. We have both come to terms with this fact and so we have chosen to try to save what leg function she does have left, understanding that only God knows what the outcome of these surgeries will be.

The day of the surgery we arrived at Children’s Hospital at 10:30am to check-in. Ana was being her silly self and lounging in the hospital wagon. We went upstairs to the waiting room and waited for them to call us back. When they came to get us we went into a little room where two nurses took her measurements and checked her vitals. Up until this point we had been telling Ana that she was going to get her “princess crown” put on, so as to make it less scary. At her pre-op appointment, all the nurses were calling it her princess crown and they gave her a sticker book so she was actually a little excited for her surgery. But once we went into the little room where they were checking her vitals, she started to get very nervous. Luckily Children’s Hospital has a play room for the kids in the area where you wait for surgery. We went in there and all her worries seemed to dissipate as she played with the toy kitchen. Then we got taken into another room to wait for the doctor. He came in and explained what was going to happen, as did some of the nurses and the anesthesiologist. It took about an hour for them to get everything settled, then they wheeled her off, still awake. You could tell she was nervous, but she was brave and waved goodbye to us as they wheeled her away.

Ana relaxing in her wagon before surgery

We went downstairs to grab lunch while she was in surgery. Less than an hour later I got a call from the doctor saying that everything had gone really well and that they were taking her into recovery. We went upstairs to wait for them to call us back into recovery. Once we got there she was still asleep on the bed, but she woke up shortly after we arrived. She was groggy and confused and was not happy that she had a whole new set of hardware on her head. She kept trying to pull it off while crying and screaming that she didn’t want her princess crown anymore. This was probably the most difficult part of this whole process was seeing her like that.

I finally picked her up out of the bed, which I think helped her calm down. She would fall asleep again for a few minutes and then wake up screaming. I ended up having to carry her up to her room while the nurses pushed the bed and all the attachments down the hallway next to us because she wouldn’t let go of me. Once we got to the room, I sat down with her on the bed and she fell asleep for a long time. She woke up around 6:00pm happy as a camper, I think because she was still quite medicated. She wanted to sit on the couch with her dad and look out the window. It was at that point that she told him, “Daddy, I like my princess crown, but sometimes it’s a little bit ouchy.”

The next morning her doctor came to see her a little earlier than planned. He had told me on the phone that they were going to need to tighten her screws the next day because the bones expand and the screws loosen, but I wasn’t expecting them quite so early. She hadn’t had her dose of pain killers yet and it all happened so fast that I didn’t think to tell them that they should wait until she got her next dose of Motrin. He and his assistant tightened the screws as quickly as they could, but it the look of pain on her little face was almost too much to bear. She squinted up her eyes as tight as they would go trying to endure the pain, and then she just broke down sobbing. It was awful to watch, and in retrospect I wish I had told them to come back later after she had gotten her dose of Motrin. After that she just wanted to be held and she wanted her daddy. Unfortunately he hadn’t gotten to the hospital yet because he also was not expecting them to come so early. So we packed her up in her wagon and went downstairs to wait for him. As soon as he came in the doors of the hospital he picked her up and she crashed out on his shoulder on the way back up to the room. She slept for a long time after that but once she woke up she was back to her happy self.

The next few days were up and down. She slowly weaned herself off pain meds after about 4 or 5 days, and we started increasing the amount of time she spent in traction, as well as the amount of weight. Some days were hard, others were easier. There were times that Ana didn’t want to get into traction and she would cry and yell at me and tell me that I was making her mad when I insisted that she get into her traction. Thankfully Children’s Hospital is full of kind volunteers, wonderful nurses and there are plenty of fun activities and events that the kids can attend. Ana got a visit from Miss Colorado that she couldn’t stop talking about, she got to meet Ms. Rodeo South Dakota and Ms. Rodeo Idaho, as well as the pony they brought with them. She got to do multiple crafts with volunteers that come to the hospital and we got to see a concert by a musician who came all the way from Estes Park. We also had visits almost every day from friends and family who brought us food, presents for Ana, and even a custom made princess crown and princess wand. To all the wonderful people who called, texted, visited, sent us positive thoughts and prayers, thank you so much. We couldn’t have done it without your love and support. We appreciate all of you so much!

Ana is home now and is doing so great in her traction. It has gotten to the point where she actually enjoys being in it and she gets right into her chair as soon as she wakes up. She has discovered how to swing off the edge of her wheelchair, and pick her legs up from the ground and spins around in her walker. We are still adjusting to life in traction, traveling with all the equipment has been a challenge to say the least, but we are figuring it out and doing the best we can everyday.

November 21, 2019

A Word About Our Words

The other day I was having a conversation with a mom whose child has a developmental disability. He was recently diagnosed with autism, and she was in the early stages of trying to make sense of his diagnosis and understand the reality that would be her life from now on. She shared with me how she felt the moment that the therapist who evaluated her son brought up autism. Her and her husband both felt like it was a punch in the gut, like this diagnosis meant that something was wrong with their young son. I first want to acknowledge and hold space for these kind of feelings. I remember when I first received that call when I was still pregnant with Ana. The genetics counselor left a message on my voicemail that I didn’t happen to check until a Saturday. Just hearing those words, “Hello, this is John calling from the Genetics Department at Kaiser. We’re calling to let you know that you will need to come in for another ultrasound, we found something abnormal in your images and we would like to take a second look.” My heart immediately sank. I remember sitting there on the couch with my husband at the time. He noticed my face and asked what was wrong. I told him what the message had said. He tried to calm me down and assure me that it was probably nothing, it was probably just a mistake. I knew though. I had that sinking feeling and I remember articulating out loud. “No. There’s something wrong with her. ”

That was a little over three years ago. Looking back on that moment now, I realize that my choice of words was not ideal. However, it makes sense why that was my first reaction, and why most of our first reactions to our children being diagnosed with disabilities is to think that something is “wrong” with them. Our society has conditioned us to believe that there is a standard, a baseline, a status quo, a “normal” and that everything that differs from that norm is somehow less than, imperfect, or incomplete. We are conditioned to believe this from a very young age. Take a second look at the advertising that surrounds us everyday. Most advertisements feature young, attractive, white, straight, able-bodied individuals. Some companies have made big strides in recent years to try and change this, (I’m looking at you Target) but for the most part our advertising gives us a very narrow image of what is considered “normal”. The word “disability” in and of itself implies something negative. The prefix dis means “apart,” “asunder,” “away,” “utterly,” or having a privative, negative, or reversing force. I didn’t know what privative meant, so I looked that up too. The definition of privative is “marked by the absence, removal, or loss of some quality or attribute that is normally present”. It’s no wonder why we all have such a negative view of disabilities, the word itself implies incompleteness. Language and advertising, coupled with the way that the people around us talked about or acted toward difference when we were growing up, really sets the stage for how we think and talk about difference and disability.

As I got to talking with this mom, we both remembered that growing up we were taught not to stare and not to talk about kids with differences. We were taught through implicit messages that people with disabilities were to be pitied, that we should be kind to them, and to never make fun of them, but pity doesn’t leave much room for any real connection. When we found out that our children were going to have differences, at first both of us thought about all the negative things that would come with that. But over time, and through experience, I have learned to shift my narrative, and I want to help shift yours too.

One of the things this mom told me was that after her son’s diagnosis, her family and friends said things like, “it’s not a big deal,” and “the doctors are wrong, they just want to diagnose kids”. After Ana’s diagnosis I remember people also reassuring me that it wouldn’t be a big deal and that the doctors would probably be able to “fix” her spine. I can understand the impulse to say things like this in an effort to quell someone’s discomfort in a difficult time, but at the same time we have to interrogate the beliefs behind these kinds of appeasements. At the root of these statements is the belief that any type of difference or disability is inherently bad or undesirable. This belief is rooted in ableism. According to the Center for Disability Rights, “ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other” (Smith). Although we might not see the above statements as discriminatory, they certainly rest on the assumption that people with disabilities need to be fixed, or that there is something wrong with them.

As I sat and talked with this mom, it reminded me of the concept of intersectionality, something we had talked about often in previous conversations. Intersectionality refers to the interconnected nature of social categorizations such as race, class, gender and ability as they apply to a given individual or group. Growing up as a mixed race female who presents as white, I have spent a lot of time thinking about the categories of race and gender, how they intersect and inform my experience of the world. As I grew and matured, I came to understand race and gender as a part of my identity as an individual, and came to see it as an integral part of others identities too. Depending on our intersections, and where and how we grew up, some of us were taught to see our identity markers as positives, some of us were taught to see them as negatives, and others of us weren’t aware that they existed (this is mostly true of those individuals who belong to dominant groups). Before I had a child with a disability, I hadn’t spent much time thinking about how ability fit into this equation, because I belonged to the privileged able-bodied dominant group; afterward, I developed a whole new perspective.

What if disability was just another integral, important and valued part of our identity? What if we viewed disability the same way we view race and gender, as a part of the individuals identity, inseparable from them, something that shapes their world view and experience, and also something that creates a diversity in our population that should be celebrated and shared with others.

In this country we used to view certain races and genders as inferior. Things definitely aren’t perfect in this area, but we have made a lot of progress toward inclusion. I would argue that certain intersections are still relegated to the margins of society more than others, and one of those populations are individuals with disabilities. How do we change the narrative? How do we create a society in which individuals with disabilities are seen as an integral part of our culture and communities, whose differences should be celebrated and embraced as a part of their identity, not shunned, changed or fixed? What if we were so comfortable with disability that we didn’t have to look away every time we saw someone in a wheelchair or someone with a developmental difference? What if we approached them and said hi, started a conversation, danced with them at a party, sat next to them at lunch, asked them how they are doing, or what they are most passionate about? I want to challenge all my readers to try something a little different this week. Read a story to your kids about difference, start up a conversation with someone who is different from you and encourage your children to do the same.

Here is a link to a website with a ton of books about difference. Read these with your own children, your nieces, nephews or your students! https://www.mrsdscorner.com/60disabilitybooksforkids/

October 28, 2019

Silver Linings

Since my last post, life has been a little crazy with work, school, trying to schedule doctors appointments in other cities to get second opinions, and all the other commitments I have going on. In the couple of weeks following Ana’s doctor appointment, I have spent a lot of time crying and worrying, but today I want to write about the silver linings.

The day I took Ana to Children’s Hospital for her appointment, I ran into a friend who was on her way out of the doctors office as we were walking in. A few weeks earlier her child was playing on the floor in front of us and she asked me if I had noticed that his head tilted to one side. I said no but asked her to show me. She picked him up and showed me how it tilted very slightly to one side, and told me that when she lays him down he always rolls to the same side. Knowing what I know about the spine and early onset scoliosis, I told her that it was probably nothing to worry about, but that if I were her, I would get it checked out just to be sure. Two weeks later, I see her walking out of Ana’s orthopedic surgeons office right before our appointment. I knew that she was there to get him checked, but wasn’t sure what news she had gotten. I approached her to say hi and asked how her son was doing. She immediately started to cry and told me that he had been diagnosed with early onset scoliosis. Having been there and knowing what that feels like, I gave her the space cry, and be scared and worried about her son. She kept apologizing to me because she knew that Ana’s case is more severe than her son’s, but I told her to stop that and to just let herself be upset. She had just gotten big scary news and didn’t know what the outcome would be for her son. No matter how small, or big our diagnoses are, they are always gut wrenching when it’s your own child.

When it comes to the difficulties we all deal with, it can be easy to compare our pains, or our struggles and quantify them as better or worse than what others are going through. As Teddy Roosevelt once said, comparison is the thief of joy. I would go one step further and say that comparison is just a straight up thief! Comparison not only steals joy, but it also steals our ability to grieve when we need to, to fall apart when we need to, to cry when we need to, and to ask for help when we need to. After the many personal and family trials that I have been through, I have come to believe every trial that we go through is tailored specifically to help us become the best version of us that we can be, but that doesn’t mean that it isn’t REALLY HARD! Be compassionate with yourself and know that you are doing the best you can with what you have been given, and that it’s okay to be sad, angry, frustrated, or just cry! I probably cried for two days straight after we got the news about Ana’s surgery, and I had to keep reminding myself that it was okay to do that. I needed to feel all the worry, the fear, the anxiety and the pain of knowing that my daughter is going to experience something difficult and that I might not know what to do to help her through that. It was only by experiencing all of that emotion that I was able to come out as a functioning human on the other side. And let me tell you, for two days I was most definitely not a functioning human.

As I sat in the hospital talking to my friend about her son, we acknowledged how that in a city of 600,000 people, it was not a coincidence that we ran into each other that day. I knew that God had put me at that location at that exact time so that I could comfort my friend as she went through some of the same things I experienced when Ana was first diagnosed three years ago. I went into our appointment feeling grateful that I was able to be in the right place at the right time to comfort a friend. Little did I know that she would be the one comforting me just a few hours later. After my appointment she text me to see what the news had been about Ana. I told her about the surgeries and she said, “You know, when I saw you today I thought it was just for me. But a few hours after I got home I felt like it was for both of us and that’s why I texted you. I’m so glad I did.” The next day, she and another friend brought over a little gift basket for me with a sweet card reminding me that Ana and I were both super strong girls and that we would get through this trial. The following day another friend offered to bring me dinner on a day when I was crying so hard in the car that I couldn’t get it together enough to go into the grocery store. That weekend I had signed up to take a coaching class. On the final day I stepped out to use the restroom and when I had come back everyone was already partnered up. I ended up with a woman named Carrie who I hadn’t worked with yet. We were practicing process coaching, which is where you just sit with someone in their emotions, positive or negative. I was still feeling emotional about Ana, so I went first and decided to share about her surgeries. When the time was up, she told me that we must have been meant to be together for this exercise, because Carrie had had spine surgery when she was 12 years old and had rods and screws in her back. I immediately burst into tears and we held hands as she told me about her experience of getting surgery and wearing a brace throughout middle school. She told me that she had always wished that she had had her surgery at a younger age so that she wouldn’t have gotten made fun of so much in middle school. Hearing her perspective made me so grateful because I had not even thought of it this way before. Even though it is scary and dangerous, there are also many blessings to Ana having her surgery at a younger age than I had thought of before our conversation.

The experiences I have had over the past few weeks have shown me that there really is a silver lining to every cloud. Even in the face of so much sadness and worry, it is so heartening to know that God is watching out for all of us and putting the right people in the right places to support us and lift us up, right when we need it the most. Thank you to all of my friends and family, and the wonderful strangers that I met a few weekends ago who reached out, texted, and called to offer support or prayers. We appreciate and love all of you!

October 8, 2019October 8, 2019

Monday at the Orthopedic Surgeon’s Office

Today we saw Ana’s orthopedic surgeon. We see him every 6 months to take an X-ray and make sure that her spine is still stable. Those of us in the congenital scoliosis community are familiar with the phrase “watch and wait”. This is the phrase that doctors use to describe the recommended treatment for very young congenital scoliosis patients. “Watch and wait” might not sound like much of a treatment, and in fact when I first heard it, I thought it sounded a lot more like torture than an actual recommendation for treatment. This prescription is just like it sounds: watch the spine, and wait till it changes. Congenital scoliosis can take so many forms. It can change quickly, or it can stay relatively the same over a long period of time. Generally when patients are so young, it is difficult to operate on the spine. Most people are aware that when a baby is born, their bones are like cartilage all throughout their body. The way that spine surgeons secure the spine after surgery is with metal rods and screws. This becomes difficult when the bones are soft, as they are not stable enough to hold the screws in place. When Ana was first diagnosed, her surgeon told us that the optimal time for surgery would be between the ages of three and four. At the time it sounded so far away that I put off worrying about it. Going into today’s appointment, I thought about the fact that Ana turns three in December, and that the surgery discussion could be on the table. However, knowing that she was at the appropriate age for surgery did not necessarily prepare me for the news we received today.

CT scan of Ana’s spine, taken in March of 2017.

As we walked out into the hallway so the doctor could watch Ana walk, he told me that the degree of curve in her spine had increased by 20 degrees. It went from approximately an 80 degree angle, to a 100 degree angle. As soon as it came out of his mouth, I felt my heart drop into my stomach. I had to clarify and make sure that I was hearing things correctly, and he confirmed that it was correct. She has never had a change in curvature before, until today. Change in a spine that is already atypical is never good. We walked back into the exam room and he walked us through the surgeries needed. They would need to go in through the back first, and secure her spine in place using rods and screws. With a spine as complex as hers, they do not have the option to straighten it. After the first surgery heals, assuming everything goes well, they would go in again, this time from the front, taking a rib from her side and fusing it onto the front of the spine to create a sort of bone graft that would give the spine more stability. This is an extremely high risk surgery, with many things that could go wrong. The two biggest risks are complete paralysis, and infection. He said there is a 20% chance that she could lose all function in her legs as a result of this surgery, but the greater risk is the possibility of infection. He said that the hardware they put into the back would make the curve in her back even more pronounced than it already is, and since her body is so small, for some children, the hardware irritates the skin from the inside causing infection. If that happens they have to remove the hardware which can be detrimental, as it would destabilize the spine. The pro’s of doing the surgery soon, would be that we would stop the movement in her spine and try and preserve some leg function. He did say that at this young of an age, the spinal cord is more likely to heal and preserve some functionality, assuming that everything goes well.

Sitting there listening to the doctor explain our options, it took everything I had not to burst into tears right in front of him. I kept it in until he left, but walking out of Children’s Hospital, the tears started to come. I was holding Ana as I was walking out and she asked me what was wrong. I told her that mommy was just sad. She looked at me and said, “Mama, do you need an Ana hug?” I said that I did, and she wrapped her little arms around my neck and hugged me all the way to the car. When I put her in her car seat she asked if I was happy now and I said yes. She looked at me inquisitively and said, “But your eyes still look at little sad”. I agreed that they probably did, but that I would be okay.

Ever since Ana came into our lives, I learned very quickly that she was a much stronger spirit than I. I think that God gives us all challenges for a reason, to help us learn, grow and become better people. As I walked to the car with Ana’s arms around my neck, I realized the irony of the situation. I am not the one who will be undergoing multiple surgeries, yet she is the one comforting me. I only hope that one day I can become the mom she needs me to be. The mom that wipes her tears of pain, but also pushes her to try her hardest in recovery. The mom that listens to her vent her frustrations with her physical difference, but also helps her see all the many blessings in her life that she can be grateful for. The mom that comforts her when she gets down on herself, but also shows her the path to self love and acceptance. i’m so grateful that I was blessed with this little angel, who is helping me to be a better mom and a better person everyday.

September 23, 2019

Meet Ana

I’d like to introduce my daughter, Ana. She is my inspiration and the reason I decided to start this blog. Ana’s full name is Anakalia, but we call her Ana for short. She was born on December 9th, 2016 and she came into the world facing some pretty big challenges. Ana was born with a very rare spinal anomaly which caused her to be paralyzed from the waist down. Her condition is called congenital scoliosis. Now I know, some of you may be thinking, “I know what scoliosis is! I had a friend or a cousin with scoliosis in middle school, they had to wear a brace for a few years, it wasn’t that big of a deal.” The kind of scoliosis you’re thinking of is called adolescent onset scoliosis and it’s much different from congenital scoliosis. Honestly, I wish there was a different name for Ana’s condition because it is so different from what most people understand as scoliosis. Approximately 4 in 100 children have adolescent onset scoliosis, whereas only 1 in 10,000 newborns are diagnosed with congenital scoliosis. The basic difference between adolescent onset scoliosis and congenital scoliosis is the formation of the vertebrae. Ana has two vertebrae that formed incorrectly in the womb. Her T7 and T8 vertebrae did not form all the way and are therefore called hemivertebrae, because they basically only formed halfway. As a result of these two hemivertebrae on top of each other, the top vertebra slipped off the bottom one and actually dislocated her spine. Because of this dislocation, she has a compressed spinal cord which resulted in paraplegia. When we hear that someone is paraplegic, it’s common to think that they can’t move their legs at all, but that’s not necessarily true. Paraplegia varies from person to person depending on their spinal cord or brain injury, and most paraplegics can actually improve their function over time. Ana is no exception. As a baby she couldn’t even turn over on her own until she was about nine months old. Now she is two and a half and she is able to pull herself up into her walker and walk all over the house on her own. Her upper body strength is amazing, and she continues to grow and develop in lower body strength every day with the help of her physical therapist.

This blog will document Ana’s journey through her physical challenges as well as my own journey in parenting a child with differing abilities. Even though she is only two and a half, Ana has already taught me so much about resilience and determination. As she gets older she has begun to realize that she is different from other kids, and has vocalized some of this frustration. As a mom, it’s hard to watch your child suffer with difference at such a young age, and know that it’s something she will struggle with for the rest of her life. I know I’m not the only mother out there struggling through this, whether your child has a disability or not, at some point we all struggle with supporting our children through feelings of disappointment and loss.

After Ana had a particularly hard week a few weeks ago in coming to terms with her physical differences, I was feeling pretty down and did some journaling. This always helps me to get at what is underneath my feelings and identify ways in which I can change my thoughts or behaviors in order to change outcomes. When it comes to Ana’s struggles, I feel like I’ll take one incident that happened, and I’ll multiply it by 1,000. I’ll start imagining all the times that she will feel different, all the times that she will feel left out, all the times she will have her heart broken, and the weight of all that grief can become so heavy. Sometimes I feel like I’m not a strong enough mom to be able to deal with all of the pain and heartache that she will experience over the course of her life. I feel like there’s so much I need to teach her. I need to teach her to be resilient and strong, to know herself, to have healthy self-esteem, to truly love herself and to trust herself no matter what other people think or say. When I think of all of those things, it just feels so daunting, and I’m not sure if I have the ability or the capacity to do all of that. But even though I’m not sure I can do it; I’m not sure I can be the mom she needs me to be; I know I have to try. I have to try for her, because she means the world to me. If I can attain even a little bit of this wholehearted parenting thing, then I can give her a few more resources with which to tackle this crazy life. Follow our journey if you are looking to cultivate a little more resilience, love, hope and faith in your families and relationships, whether you are raising kids with differing abilities, able-bodied children, or fur babies. I hope to give you some strategies to cultivate connection and trust while sharing our struggles and challenges with you.