Everyone needs a place to call home

Although a small group of people overall are actually homeless, many are without a place to call home.

Feeling homeless and being homeless can be the same or it can be quite different.

Everyone , every person, every being ,whether they admit it or not, needs to feel there is a place that is home, that is safe, that is peaceful.

For some this so called home in a garden, or a park or in their physical house. Some find it in a religious or spiritual place or worship. Some find it in a bar and some find it on a website.

Over the past year , I personally have been working with my sister, building a website a place to share and place to learn and a place to find comfort. This website  https://whitebearsworld.com  is still in progress but it main focus is for children and their families that have a rare or chronic disease, to share their stories and learn from one another. A place to share ups and downs and a place to offer new found information(medical)

Also in this past year I have spent a good part of the year in the hospital with my daughter, who has VACTERL Syndrome. Over their year I found it impossible to work and properly care for her, my son and myself. We would physically be homeless if not for the kindness of my family , we are staying at my Dads house while we figure out of next move.

Life is crazy and hectic sometimes and recently I have realized how important being home is.

Having that safe zone. Knowing people care if I am ok.

I wish that for everyone, although running into a very old friend whom was holding a sign looking for help getting food. He is not only emotionally homeless but physically homeless as well.

It broke my heart to see and I felt even worse that I have no way to help.

Please always send kind wishes to others as many many are physically or emotionally homeless.

Hoping as https://whitebearsworld.com, unfolds it will offer some comfort for others fighting rare and chronic disease to feel like they have someone, even a stranger who cares to know they are ok

Adding a few more worries!

This week is moving week. I have been packing for days and although I am almost done, there is still plenty of work to do.

I have not been looking forward to this move as I am putting my stuff in storage and staying with my Dad. After 25 years of living on my own, I am kind of sad that I have to pack it in a move home. I have been stressed about it, but have recently decided to look at it another way.

I have decided to see the good in it. I will be able to start saving some money, I will be able to not have to worry about lack of money and I will get to spend a ton of time with my Dad. I will get to live in a very nice area of town and I will be safe and loved. (of course so will my kids)

I always felt like I did not want to burden him. I know it will be an adjustment but in the long run it is short term and I jumping from one bad rental to another bad rental is just becoming silly at this point. I do have some concerns that my dog will be a nuisance to his dog as mine is much younger and a lot more energetic. Maybe it will all surprise me and they will become buddies, I hope at least.

I have not been able to work much the past few years, due to my daughter’s chronic illness and needs and my own medical needs. My knees are shot and my anxiety and depression were taking over full force. I have since started on a new medication and it is helping me to be more focused on what is important in my life. My family. My Health, their health and so on.

My daughter’s health has been a challenge to balance since the day she was born just about 13 years ago. She has Vater Syndrome(VACTERL Syndrome) Chronic Kidney disease and a whole bunch of other health concerns.

She is currently about 1-1/2 years post Kidney Transplant. She has had a lot of challenges in the past year or so but so far her Kidney seems pretty happy. She has some  virus issues that come and go and a constant battle with urine infections due to her lack of a bladder. At the end of next month we see Urology and they will make plans for surgical intervention to try to help with these constant infections. The procedure is called a Mitrofanoff and it is a long and complicated surgery at the time they will create a bladder for her and make a passageway using her appendix to allow for proper urination. It is big, she hates thinking or talking about it but it is truly starting to become an issue that is is not done already.

Yesterday was her monthly lab day. Although she was just discharged from the hospital last week and is just now finishing her round of antibiotics it seems something else is brewing. Her labs are off, her numbers are heading in the wrong direction and she is looking at another possible admission on Friday when she goes back to have a minor procedure(stent change) and repeat labs.

We are moving on Saturday so this could not come at a more complicated time, but hey that is what we do, complicated. I feel so sad thinking that the kidney could truly be acting up, but the doc said no panicking, it is not time to panic. It is time to watch for things and time to take care of the urological issues.

I would hate to think she could go through all this and potentially lose the kidney anyway. My poor little girl should simply be getting ready to celebrate her big 13th birthday. She should be ready to finish up school for year and enjoy staying at Grandpa’s where she can actually use the community pool as it is very clean and very well supervised.

Well I guess my worry hat is on this morning, but since she is in school , luckily she is not paying any attention to me. Hopefully today will be busy and distracting so we won’t be thinking about it much and hopefully I will close my eyes and my kitchen will pack itself. Yeah, I doubt that will happen but wishful thinking. As a Charmed fan, I wish I had that powers to move crap by just saying the name of the items like Paige does.. Yes I watch way too much TV!!