A Genetic Dumpster Fire

 I don't know about you but I am genetic dumpster fire and I didn't know I was until well after I had children.

  I was told, in not many details, that I was born with dislocated hips. I imagine I was put in some sort of apparatus as a baby and that it would have caused both my mom and I a lot of stress. I also had very high fevers as a baby. I had a very crowded pallet as well and my teeth were horrible. I had some very odd things happen to me when I started puberty as well. I almost died actually. I also had horrifically painful hips during puberty and sometimes could only walk with a very pronounced limp. When you are going through these things because it is part of who you are you don't necessarily realize it is odd. I have always had one leg that I just call my bad leg because of vein issues and pain. Fast forward to getting pregnant for the first time and it turns into cancer....that was odd.

  Growing up my two sisters and brother suffered from dislocating shoulders. My sister fainted at times. There was some learning issues and anxiety. Did we really think that things may genetically be off? Maybe my parents did, but we kids just suffered through wishing things were different. My brother had extreme hyperhydrosis and that was hard for him. 

  I was the first one of my siblings to get married and have children. My first biological child seemed to have some issues right off the bat. For one thing when he was born I was told he may possibly have Down syndrome. He did not. However he was never a calm relaxed child. He had breathing difficulties, what I now know was extreme acid reflux, cheek, lip and tongue ties, and he could not latch or nurse properly. He had some conjoined toes, a white patch of hair on his head as well.  He also was so allergic to many foods. Just after he turned two it was found out that he could barely see and was extremely far sighted along with a few other issues with his eyes. Eventually he was tested for many other issues but just diagnosed with an anxiety disorder and a few other things. All of my babies have been born with immature digestive systems and have had a hard time digesting breast milk and could not handle any sort of formula. There have been many struggles. 

  As the years went by eventually through a series of catastrophic events we realized that our family (all of my siblings and myself) had Ehlers Danlos syndrome. This is a genetic disorder that involves the production of collagen in the body and it is a connective tissue disorder. It affects the body is many many ways and has different classifications. It can be deadly and affects everyone uniquely. Connective tissue is everywhere in the body so it can effect so many things in so many ways. Each of my siblings have had different struggles. I think that each of my children also have Ehlers Danlos Syndrome except maybe one. I think she probably has it too, but not as severely. I am just seeing that my seven year old may have it more severely than my other children which is devastating. 

From my two parents some of the known genetic issues are:

Ehlers Danlos Syndrome

Hyperhydrosis

High cholesterol

Diabetes

POTS

Blood Clotting disorders

Eye issues

Anxiety and depression and generational trauma

Celiac Disease

Issues with circulation to the extremities (I can't remember the name of this one)

Sleep issues

Nervous system issues

I am sure there are more as well. 

  I wonder if both my parents are carriers of the EDS gene if that is how it works. My dad was born with a club foot or club feet and my mom has had dislocation issues as well but none of them have had the extreme issues that my siblings have had. 

  So far my children have signs of Ehlers Danlos Syndrome but nothing has been too extreme. My son just had his knee dislocate a few days ago and we have had some dislocated elbows. There is a lot of chronic shoulder and muscle pain. There are high pallets and breathing issues and sleep problems. There are digestive issues and high crippling anxiety. My son's eye issues have to do with EDS as well. I have at least two children with POTS and my daughter has had her two front teeth broken from passing out and smashing her face. My husband has his own genetic issues that he has contributed to them as well.

  It was all so unknown until I was four children in! I have not been able to hold onto a lot of EDS information. I think I feel so completely overwhelmed by it all. I couldn't tell you the classification number or how to get an official diagnosis where I live. 

  I do know that EDS severity is severely affected by gut health and anxiety. If you gut health is good and your mental health is stable symptoms are better. EDS is also affected by hormones and trauma. I am realizing now as information comes to light about my seven year olds health that I need to start to deep dive into EDS research.

  Honestly I don't want to. I want to pretend that somehow this isn't real. I want to stay in this 'bubble' that isn't really a bubble as so many things feel overwhelming.

  If we believe in God the creator and know the history of the world through that lense then we know that this was not how it was supposed to be. These diseases and our struggling aching bodies, they were meant for gardens and connection and beauty. 

EDS to me, feels like a sickness stemming from extreme trauma that affects the genes.

I don't have a clue, but that is how it feels.

  I feel so awful that I have passed all these burdens and hardships onto my children. There are probably other genetic issues as well. I know I didn't know and I also know that I still would have wanted to have children. They are all such gifts. They are such talented, unique, kind, beautiful, passionate, creative, driven individuals. However their journey through life with these challenges is not easy to see knowing my part in it. I hope I can be there to love them and support them on their journeys and I hope that they will also do their own research and be proactive in supporting themselves in their individual health journeys. I do know that in all things sunlight, grounding, life giving nourishing food, much time outside, walking, stress management and sleep quality does much good. A therapist that is trauma informed can be such a light house as well in life's storms. 

  If you have genetic issues that affect your daily quality of life I hope you have a support system and that you don't feel alone. What I have learned, especially from my one sister, who has been severely affected by many genetic issues, is that there is opportunity to shine bright, and to be authentic, kind, caring and giving no matter what you are facing. However every single day is laced with pain and hardship and it is not fair! It is cruel. I wish it was different for you all. 

Love to you,

Tansy