Prevailing with Perspective

Rainbows come and go. They are often a glimpse of the light at the end of the tunnel before another storm hits. It was a brief reprieve until we experienced yet another nightmare.

Reactions to food allergies span from an aggravating itch to life-threatening anaphylaxis. One’s experience can lay the foundation for a healthy fear that supports safety. This fear can also morph into an unhealthy version which resembles a phobia. Young minds and bodies learn how to cope the best they can with deep fears. In our family’s case the solution was to drink water. If the water goes down, so does the air and although we don’t feel safe, we are safe. This was sweet Ellie rose’s strategy a few weeks ago. Pair this strategy with a poor appetite from an upper respiratory bug and you get dangerously low electrolytes.

Ellie’s hyponatremia led to a seizure. Unlike most seizures, she didn’t wake up. She went blue and laid still. I couldn’t find a pulse and proceeded with chest compressions. The emergency team arrived swiftly and after a quick debrief, we were on our way. We rushed to the hospital, where we awaited her awakening. She had moments of aggravation and calm. They decided to sedate her to complete tests. The full MRI, EEG and EKG all came back normal. They proceeded to do a spinal tap, to investigate her cerebral spinal fluid. After the lumbar puncture, they decided to extubate. After the sedative wore off, she woke. 

I share the happy ending first before describing the torment because those 18 hours were the scariest that I’ve ever lived. I relived the scary unknown of our NICU days and hung on that hope. The thought of losing my little girl now- to something so preventable- was heartbreaking. The mom guilt was insurmountable. Sleep, food, anything else except for our living breathing family meant nothing. Thoughts raced, questions were proposed, and my hands still felt tied. I couldn’t help but think about what life would be like if she didn’t wake up, or if she woke up different. I knew either way she would be loved all the same and that we would make it through. I believe this because love never fails.

I stood next to her and held her cold hand waiting for it to squeeze back. In those still moments, I rubbed her legs thinking of all the cartwheels. Praying for her gymnast dreams. I thought about all the other children and their parents, who gazed at their children with perhaps less fortunate circumstances. My heart broke for them and still does. I sat in gratitude for my education in healthcare and comfort in the hospital setting and felt compassion for those that may not feel that same way.

She extubated easy and with a few coughs was breathing on our own. We then waited for her to wake up from her slumber, unsure of what awaited. About 2 hours later, she stretched and opened her eyes. Her first words where aren’t I supposed to be at the dentist? At that moment all fear vanished, and joy was insurmountable. We knew our Ellie Rose was back. She was right her siblings that morning had a teeth cleaning appointment. We didn’t care at that moment what the road ahead meant, are Elliott was awake.

Her mind was clear, but her body was aching. The lumbar puncture was painful and led to hyperemesis. Although we were discharged, we returned quickly when she couldn’t eat or keep food down. They assured us that her electrolytes were stable, and she needed to wait these symptoms out. We remained in the hospital until her nausea subsided enough to go home safely.

Elliott Rose Vanderwall is a force to be reckoned with. She is determined, hopeful and gracious. However, she is not patient. The next days were aggravating as all she wanted to do was return to the trampoline. After a quick week, she is back to her moving, shaking and flipping self.

It took me awhile to find the courage to dig deep and share. In these moments, I find writing healing. I write and share because I hope others find comfort in these words knowing that someone else has walked a similar path. To them I pray for patience, hope, and perseverance.

Today, we still live in the most chaotic home that I know. But it feels different. I feel different. I was challenged with the longest 18 hours of my life and was rewarded with perspective. I pray that it is not fleeting but lasts. Being quick to anger is easy but slowing down to listen is hard. I not only come away from the situation with gratitude but with a readiness and listen more and for longer. To pay closer attention to what’s going on in the shots of our little one, when a tantrum erupts and when coping strategies don’t seem quite right.

I also want to use this space to say thank you for all who waited with us and joined us in prayer. Ellie also felt very loved and cared for during this time. You were our light after this storm!

Perfectly Imperfect

Perfectly Imperfect – The Dawning of New Era

As I sit down to write today, I am watching the rain fall along the panes of our windows. Cold, wet days often don’t bring the joy of bright, blue 72-degree weather but rather tend to slow many down and often times slow us down enough to see the muffled memories or quiet reflections in our mind. I have been pondering what, when and how of what I’d like to share in this post for several weeks. Today, I decided to simply put pen-to-paper or rather fingers-to-keys.

Today, my story is intended to empower families and caregivers in fostering mental healthcare in their homes and creating a compassionate space for each other. There is no doubt that the COVID-19 pandemic heightened stress and brought about new stressors for all people. I often wonder how my children will recall these last few years. Will they remember the isolation sadly? Or will they recall the extra time each other and Nana has their second-grade teacher fondly? Will they recall the big feelings that they navigated with pride or remorse?

I recognize that their reactions and recollections are out of my locus of control but my response in the here and the now is. The last year and beyond we have navigated budding mental health concerns that we knew would eventually arise due to the prevalence in our genetic pool. At first, we sought out strategies to combat the stress. We tried T.I.P.P. breaks, individual and family therapy, breathing exercises, bedtime and wake up routines, more structure, less structure, lavender, diffusers, the list goes on and on. Scenarios would improve temporarily but then we felt like we were back where we started and often times in a worse situation.

We have come to realize that this approach is simply exhausting. What if we rather embraced the stress? And, while we’re at it, what if we also embraced that are mental and emotional wellbeing don’t have to perfect? It is freeing to own that fact that we’re perfectly imperfect!

How to Embrace Being Perfectly Imperfect

  • Don’t Combat Stress, Combat Stigma.

We begin with education and the opportunity to educate ourselves and others about mental health disorders using resources such as NAMI.org or the CDC. This includes being conscious of our language and labeling of others using mental health conditions as adjectives.

  • Separate the Person from the Condition.

People First language puts the person before their diagnosis and/or ability. It acknowledges that their identity is not in their medical condition or history but rather who they are.

  • Equate Physical and Mental Illness.

We don’t discourage people from going to the doctor when they are physically ill, but some think twice about pursuing mental healthcare. The brain is vulnerable to disorder just as other organs in our body. When we can correct disruptions or abnormalities in brain function with medication, equip a young mind for healthier growth, create a mental environment that permits therapies to “stick” and provide that individual with a tool to achieve more equitable experiences.

  • Own Your Story.

I encourage everyone to find time to reflect upon your story. Whether you choose to share it or not is up to you. Sharing our stories make us truly vulnerable. However, the reward from sharing with safe people can be greater than the risk. Human connections are made through stories. In our weakness, we become stronger.

Our Story

If you were to open the medical charts of our family, you would see anxiety, ADHD, bipolar disorder, depression, oppositional defiant disorder, and panic disorder. We are not strangers to mental illness nor the therapies that accompany them. I, personally, appreciate the fact that my parents exposed me to mental healthcare providers at a young age because I became comfortable and accepting of this resource. Years later, when Frank and I perceived that there may be more to the tantrums we were witnessing, the first place we looked for help was a LCSW. Even with our personal relationships with therapists over the years, when the psychiatrist recommended medication for one of our children we were a bit taken back.

I asked myself questions like… “is it really that bad?” “have we exhausted all of our alternative therapies?” “what will their siblings think?” “will they need to take it forever?” It was in this moment that I realized I was standing in the way of a potential solution for my child. Then, I looked into their young eyes and asked if they’d like to try it. They held their gaze and provided a confident yes.

Needless to say, we started the medication and while the story is not over, the chapter filled with fear, horrific bedtimes, concerns for self-harm, and words that belong only in parents’ nightmares is closed. We are experiencing a rainbow as the sun emerges upon our personal storm. With this dawn, we see restored sibling relationships, the return of a sparkle in their eyes and a little more peace of mind.

Rainbow At The Dawn Photograph by Edward Pacil

I would be remiss in a post like this to not offer immediate help for those who feel ready. If you or a loved one are seeking help, know that it is there. SAMHSA’s National Helpline is a free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders. They can be reached at 1-800-662-HELP (4357)