Platform: OUR PLATFORM IS TO Raise awareness About spondylocostal dysostosis, klippel — feil syndrome, and thoracic insufficiency syndrome. FURTHERMORE, TENLEIGH’S TROOPS PROMOTES advocacy and support!
Disclaimer: The content is NOT intended to be a substitute for professional medical advice, diagnosis, or treatment. ALWAYS seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition.
Supporting Parents of Medically Complex Children:
It is not about who came first, but who came and never left.
In general, Supporting Parents of Medically Complex Children can be a difficult obstacle. Once inducted into “the parents of special needs club”, their priorities and responsibilities reach a whole new altitude. Suddenly, the parenthood they once expected turns into a battle of survival.
Post-Traumatic Stress Disorder in Parents of Medically Complex Children:
Additionally, the Journal of Health Psychology conducted an analysis correlating the prevalence of post-traumatic stress disorder (PTSD) in parents of children with a chronic illness. Overall, the data showed that 23% of parents met the criteria for PTSD following an extended Pediatric Intensive Care Unit (PICU) hospitalization. Furthermore, parents of medically complex children live in a state of hyper-vigilance, meaning they are in a state of increased alertness. In summary, the fight or flight response becomes their active defense system.
Symptoms of Post-Traumatic Stress Disorder:
When most think about post-traumatic stress disorder (PTSD), combat soldiers usually come first to mind. However, these last two challenging years of my life have brought me greater insight into the disorder. According to the Anxiety and Depression Association of America (ADAA), PTSD can include some of the following symptoms;
- Usually, PTSD is related to recurring flashbacks or nightmares, causing them to relive the trauma repeatedly.
- Severe distress is evident, reminded of the trauma. Triggers are included but are not limited to words, objects, situations, and more.
- Hyper-vigilance and being easily frightened are some of the many symptoms that cause disruptions in daily routines.
- Likewise, PTSD causes difficulty concentrating and general memory problems. PTSD often results in amnesia when recalling events related to trauma.
- Without treatment, PTSD results in feeling hopeless about the future, emotional numbing, detaching self from others, and engaging in self-destructive actions.
- Additionally, PTSD may also experience irritability, anger, overwhelming guilt, or feeling on edge following their trauma.
- Lastly, PTSD can cause hallucinations or hearing noises that are not real.
As expected, parents of medically complex children are more than likely checking off a few symptoms as well.
Becoming the “Expert” in a Rare Condition:
Raising a child with a rare medical condition is both busy and unpredictable. After discovering our child’s diagnosis, we devote our entire soul to researching, consultations, appointments, therapies, and so on. As a result, becoming an expert in your child’s condition is a life-altering process and is not easily relatable to other parents. Sooner or later, we turn to the internet in desperation to find others who “get it.”
The “Invisible” Patients:
It’s not easy, but it is worth it.
We carry endless bags of medical supplies, specifically for emergencies.
The inside of our house looks similar to a hospital supply room – you never know when there could be a pandemic!
Not to mention we always have at least one back-up plan. In other words, crisis preparation is our hobby.
Our doctors are on speed dial because We do not have the time or patience to beat around the bush.
Overall, the majority of our conversations are with doctors, nurses, therapists, DME, surgical coordinators, etc.
In fact, we can recite our child’s medical history without skipping a beat.
Without a doubt, this all came with countless sleepless nights spent researching.
Finding the Right Support Group is Key!
Most importantly, parents need to consider joining a support group, but the trick is finding the right one. Although there is no manual on raising a child with spondylocostal dysostosis, there is a Facebook group consisting of 906 members. These members have also earned the title expert in Thoracic Insufficiency Syndrome. Above all, these are the experts we go to when the doctor cannot be reached.
Halo Gravity Traction Extended Family at Boston Children’s Hospital:
During the thirty-nine days admitted at Boston’s Children’s Hospital, the halo blessed us with multiple families who understood the extent of our struggles. Usually, we are not inpatient with families going through the same experience, and certainly not for as long as we were. For this reason, departing from Boston was the epitome of bittersweet.
Supporting Parents of Medically Complex Children:
Overall, parents of medically complex children yearn for human interaction, just like everyone else. Additionally, we want to relax with family and friends despite always discussing the medical world. Although the experts cannot tell us what the future will bring, positive feedback and normalcy is the golden ticket to ease our nerves.
What you can do to support a family member or friend who has a medically complex child:
- First, we want you to read this!
- Second, offer support because we only share a fraction of our trials and tribulations.
- Invite them to have a mom/dad night because god knows we need it!
- Ask questions because we secretly love to educate others!
- We crave human contact just like everyone else.
- Do not compare parenting styles because they are incomparable.
- Without a doubt, our spouses and parents have heard it all. Therefore, take the time for a venting session, especially without judgment.
- For the most part, our responsibilities and priorities revolve around keeping our children alive.
- Offer to watch their child, especially for a quick errand run.
- By all means, initiate a call or text to see how they are doing.
- Research the condition of the child.
- To demonstrate an example of inclusion, accommodate their child if possible.
- Above all, we ultimately do not want to become a burden.
Please give us feedback and share to promote awareness to supporting parents of medically complex children!
Donations to help the family with medical expenses can be made at http://www.gofundme.com/tenleighjoy
I am not an expert mom who has all the answers. I am the mom who cannot stop looking for them.