Validation, Answers, and a Plan

 I still had panic attacks regularly and maintained little control over my anxiety. Our Princess got accepted into our state’s Head Start program due to her delay in walking. The funny thing is that when they formally tested for delays at the health department, the ladies were so impressed by how cognitively advanced she was that they were able to practice some of the more advanced kids' testing that they said they never get a chance to do. They only found a 25% gross motor delay, based on her not walking but loving to climb everything. They needed a 25% delay in multiple categories to pass her into the program. However, the lady in charge of the assessment told me that if she and the fellow assessors all agreed, they could auto-qualify her based on circumstantial needs. Since they saw her using me as her personal walker and having zero independence away from me, they all agreed that it was greatly limiting her learning and exploring. Using me as scaffolding so to speak. Especially based on how far ahead she was in everything else, they figured she would take off even more mentally given the ability to navigate her surroundings independently. She had treated me like scaffolding for so long that my hands had become just extra tools for her to use.

Her meetings with the early intervention specialist was always a super fun playtime for her. Since her case was so unique and I’m also rather observant and smart myself, it was very much a team effort between the both of us combined with my dad, to navigate all of Princess's unique quirks. And many she has! We used to call her “OCD Baby” as a nickname we jokingly used for a while until it became evident that this was actually a major possibility for her, diagnostically. She loves to count and control. Control and independence are VERY important for her. She gets very frustrated that she can’t do everything the big people can do, and it’s been a major drive in her life to learn how to do everything perfectly. She loves multiple-step instructions and work work work! The more repetitive the work, the better. She also has the name “Danger Baby” that we still use VERY often. She sees a challenge and she turns it into a goal. Anything she is told she can't do, she never forgets about it and keeps reminding you she’ll be big enough to do it someday. Climbing is her most favorite thing. She climbs everything all the time, mainly using all her leg and arm power.

During that time we would go on very long walks every day. She is a MAJOR “Nature Baby” too and would live outside 24/7 if she could. Ever since she was super tiny, she would just stare at the trees whenever she could. Then as she got older we would sit on the back porch and count them. When she was just starting to be able to hold my hand while walking, we would take very long walks all around our VERY big backyard or at our local parks. She loved to walk, walk, walk. It was such a big adventure for her to find as many trees as she could and say “Hi!” and hug them all. She was the sweetest, tiniest tree hugger! When the interventionist suggested physical therapy for her to begin walking independently, THEN Princess’s doctor finally agreed. Within two weeks of starting PT she was walking on her own! We focused so much on her core muscle strength that the PT believed Princess must have missed gaining it by not correctly pushing up and holding up her belly and hips to crawl. She did tons and tons of baby sit-ups like a champ! She had a great time at PT but was not always 100% cooperative. After six months of PT, she was at or above average for gross motor skills for her age. She had VERY much made up for tons of lost time.

We were still concerned about how she would turn her feet inwards to walk often and were also able to get a referral for a formal pediatric orthopedic surgeon. He was able to reassure us that her bones and feet were developing normally via an x-ray. The cutest freaking x-ray results I’ve ever seen in my whole life (and i’ve seen a pregnant guinea pig x-ray!) Tiny little human toddler bones were so precious and adorable spread out and surrounded by so much squish! He did a physical exam on her and mentioned the same comment her doctor mentioned every single time she had done a physical exam on Princess: “Her hips are extra flexible.”

I had also been told that about myself so very often recently by my PT, neurologist, and chiropractor, as well as the many past yoga teachers I’ve had during my life. So, I made a comment and mentioned, “My doctors all say that about me too.” He suddenly got a VERY serious look on his face, stared directly at me, and said I really needed to see a geneticist as hypermobility is the main symptom of Ehler-Danlos Syndrome, and that it is a genetic disorder passed down via DNA, so it is highly likely that my children have it too. I was so surprised! No one had ever made a comment about my flexibility being bad, just always pointed it out and noted.

I went home that day and did a GREAT deal of research and was completely floored with the information I was reading. It all matched up. It was 100% me and all the issues I had been dealing with my ENTIRE life. I requested a geneticist referral and, after a three-month wait, finally got in to see probably the smartest lady in this entire state. She viewed and measured how flexible my joints are and their varying hypermobilities. We spoke about detailed family history and my own symptoms very briefly, too. She was then VERY sure I had EDS and spent the next forty-five minutes describing to me exactly how I must feel on a day-to-day basis and explaining in very scientific terms why my body is the way it is. It felt like a spotlight shining directly on the true person behind the curtain after being duped and fooled for 35 years.

I was so relieved and had never felt so seen in my entire life. I had been dismissed and treated like trash by almost every single doctor I had ever come in contact with. Now this genius, kind soul had opened up the potential for me to receive correct treatment while also being proactive about other degenerative issues that can be common with Ehler-Danlos as well. Her first piece of advice was to gather a team of specialists to get baselines started and everything intaked so that I could have a team in my back pocket for any symptom that could possibly occur as it arises! That is the only “cure/treatment” currently for EDS: treat symptoms as they occur. We sent out for official DNA testing too look for the scariest types that have known genetic markers.The first and most important task upon receiving even a general hypermobility diagnosis though? Check in with a Cardiologist! An extra bendy cardiovascular system is undoubtedly the scariest, and most deadly, out of the 13 types of EDS. 

For more info, check out this link from the Ehler-Danlos Society website:
https://www.ehlers-danlos.com/what-is-eds/