You know, I don't think it's most people's fault that they don't 'appreciate' or that they do not really understand how fragile and short life can be; it's that they are truly ignorant and do not know anything different than what they know. A lot of the time we think that things will not happen to us because it doesn't run in the family or will not happen because we ate all our veggies and exercised daily but the truth is, becoming disabled or chronically ill can happen to anyone, anyplace, at any time and we do not educate enough about this fact. In schools, we should be teaching about the common "rare" chronic illnesses, doctors should have extra studies about this before graduating, and we should be up to date on what could possibly happen . Even then, we'll still have people who will try to turn a blind eye and will be shocked when the diagnosis comes, and that's where community like this comes in so that we are able to learn ho to adjust our sails instead of being bitter and in denial.
You know, I still have a lot of anger but I'm grateful for the little bit of quality of life I have and the moments I'm able to be apart of and I'm always open to learning and growing however I have learned to accept that I need to feel things now and move through them - not over them, not under them, but through them and that is the piece that I avoided all my teenage years and into my twenties. It's uncomfortable, and it hurts and sometimes it makes other people uncomfortable but it's so necessary and I am becoming the best version of myself... slowly. That is one aspect I can be grateful for and will make sure that my daughter knows how important it is.

Since I have been diagnosed I preach and practice to my children the importance of self care. How important check ups are. My son said mom maybe it’s better we don’t know. I replied I used to think that exact same way and look where I am and the situation we are faced with. If you can know and save your self from having the exact conversations we have been thru with my grand chrildren your own children is all worth knowing and preventing what we are going thru. The biggest fear I carry is leaving my children so soon. I wouldn’t change anything I’ve done other than go to my doctor regularly. To all of us struggling with any condition practice self care and love it’s important🫶🏼

Kris & Julie you both NAILED IT ! I honestly don't feel I have any regrets other than smoking . I'm content w my decisions, they made me who I am an gave me the ability to have compassion,to achieve goals an enjoy life w the simple things it has to offer .

Lawna, I understand what you're saying. Much education is wasted on tbe young. I say this as an educator myself. Yes, we teach, and some are able to grasp it. However, having lived history myself, and having had different medical issues, or people close to me gave had them, I learn a lot from life itself. I've noticed that with students too, the ones who lived through 9-11 versus the ones in school now who were born after it, the appreciation for it is so different. I feel health and biology are the same, unless they or someone they know have been through it, they can't always grasp it. What I think is something to focus on is compassion and leaving them wanting to learn. My aunt, whose a retired nurse, researched PH once I was diagnosed, it makes me happy that she cared enough to learn more about it. The first time my father saw me with my oxygen I could see him catching glances of me and shaking his head. Like my husband said, no parent wants to see their child no matter the age, sick.
You gave a beautiful daughter, make as many happy memories as you can on your better says. Take pictures. Live, love and laugh. My husband said yrs ago to focus on tbe good things that happen in your life, or the bad will outshaddow them. Big hugs my friend 🧡

Youth is wasted on the young, wisdom comes with age, if we only knew then what we know now. What would I have done different? Not sure if anything, for the past makes us who we are now. We can educate those around us with our knowledge and hope it doesn't fall on deaf ears. BIG HUGS!