Yesterday, was the closing of one chapter in my career as I move on the another. This comes with so many with mixed emotions. First, I am just so stressed and sad. I know everyone in the world is probably stressed, but I honestly feel like we came back from Jaye’s make a wish trip in late October 2019 when everything blew up and it has never stopped, Next, exhausted because the last position really pulled me down, so much more than the pandemic or any other challenge I have had faced in my life.

When I started the position, I envisioned making a difference for nurses, patients and other people. Instead, I walked in to place which was definitely not a good fit. During my first week, I knew I was in trouble because I knew another leader and I were not going to mesh. It was very apparent my experience in nursing was a threat to her instead of an asset. It has happened to everyone, you find someone who just doesn’t care for you. You run into the person who feels they need to control every single thing in a department, which has been repeatedly proven not to work. She wanted to move from the position I took to a different leadership position. This would have been great if she would have been willing to train me and let go of the responsibilities she had when she was in my position. Instead, she was too busy to train, gave me 5-10 minutes at a time for training….Honestly, the list is long but basically it became very toxic very fast. When you are supposed to be part of the leadership team but they leave you out of all of the “team decisions”, it makes it hard to feel like or be part of the team. In the end it became worse and even more toxic. It became a place where I no longer was allowed to have an opinion, any input I had was ignored, and literally everything I did or question I had was criticized.

For months I struggled with trying to do a job with no support and very little training. . I am being nice when I say it was not a great experience. However, I do want to tell you, if you are ever in a position where you cannot express concerns or ask a question like this and you bring up your point of view with your leader and nothing changes, in fact they get worse, get out now! You are not a failure. It is important to value who you are and walk away from a toxic relationship whether it is your job, your family, your friend. It is not ok for people to bully, gaslight, and attempt to ruin you. You are valuable, you are needed and your thoughts and opinions matter. It has taken many years for me to accept this. It really doesn’t matter what position you are in, do not let people devalue you.

Moving on, I am awed, excited and scared all at once regarding my new position. I always awed by God’s intervention The fact that I think I am alone or there is no hope, but when you look he has been carrying me all along. This week one door closed but another opened.

Today when I got up, my heart did not feel as heavy. I felt like the clouds were moving and the sun was starting to peak through. I began doubting me and then I was scrolling through random videos when one popped up with a bible verse my grandmother, said to me over and over. Anytime I felt like I could not do something, she would look at me and tell me God had a plan for me. She would then say, “Philippians 4:13, I can do all things through Christ who strengthens me”.

Life has been difficult for most of us. We have struggled with loss, pain, rejection, success and opportunities for improvement. Many times, we stress ourselves out, resulting in a distortion of a situation. We have let someone take advantage, abuse and devalue us. We forgive them or let it slide. The best thing we can do is to walk away, let it go, forgive ourselves and recognize our value. I know some people believe in God, and I do not want to preach to you or at you. Whatever, your thoughts and beliefs regarding life, you matter, you are loved and you are not alone.

As I move forward in my new journey, I know God is walking with me. After struggling for so many years with so many things, I realize I cannot control what is going on around me. I can only control my reaction. I am letting it all go. My sister, T, once said life is not a destination, it is a journey. At the time I really thought it was ludicrous, but I am learning every day is an adventure filled with learning and opportunities for growth. I am excited to grow with my new position and opportunity in life!

I have been super sick with whatever new plague the kids have brought home from school a couple of weeks ago. Anyway, I was home sick on Monday and Tuesday but decided to take the rest of the week off at the encouragement of my manager to rest, heal and spend time with my family. It has been lovely. I have cuddled with the kids as much as they wanted, I have not rushed around trying to get from one task to another. I have just sent time breathing and enjoying the moment.

This weekend, I encourage you to sit in your favorite chair, stop rushing and live in the moment. Take some time to let the pressures of everything in the world fall away and just be. I wish you and yours a Happy Thanksgiving. I hope you take the time to just breathe and enjoy living in the moment, even if it is just for 15 minutes.

May you have a blessed day.

Sigh. That’s is what I guess I am going to say about a really crappy day. But I am home and safe. I started to review, the last three years, but then I decided today I just don’t care. Instead of sitting and bemoaning some really troubling and tiring things, I am going to celebrate the good. I am so thankful for my husband and 3 children.

Today when I came home my husband greeted me by saying, “Hi beautiful. I love you”. He then enveloped me in a hug and just held me until I let go. This man means so much to me. He has stood by me through lots of shenanigans. He was excited to adopt three children, 2 with special needs. He supports me in whatever crazy hobby I want to try ex snakes, chickens, Schutzhund, knitting, sewing, and I am sure there are more I have forgotten. 🙂

Our children are the brightest shinning lights and true blessings to us. Dom and I are still amazed and in awe of how they came into our lives. Their antics continually bring laughter and joy. Of course, there are always the days when you want to scream but I would not trade them for anything.

Our dogs and cat. How could I not mention them. Our animals love and tolerate all of us with unconditional love.

I love our small spot in this world. A place to be ourselves and grow together as a family. Stoltz acres. 🙂 So today when I feel down and I am unsure about part of my future, I am going to push those thoughts aside and count my blessings and be thankful for what really matters. Family!

Have you ever reached the point where you begin to wonder if you stood in the middle of a crowded room and screamed would anyone hear or really see you? I asked my friend, Erika, this very question last week and I am still wondering the answer. We are all caught up in our own problems do we really see and hear each other anymore? I mean really.

Today is my day of standing in the middle of that room. I am screaming on the inside. I want to scream on the outside, but I am afraid I would never stop screaming and crying. As many of you know, we always have a lot going on. My husband and I are nurses, we both work full-time, have three beautiful children,2 of which have significant special needs, and we decided to both go back to school to obtain our MSN in Nursing and Healthcare administration. Sometimes I think we are idiots. This is our everyday life. And then…….

Jayetta recently was able to see a new neurologist and geneticist. They sat with us and discussed Jaye’s lab results and her MRI from March which showed disease progression through her brainstem and increased demyelination in her spine. They still don’t know what it is, it doesn’t have a name, it has never been seen in another human being, it has only been seen in rats and it is always fatal. When we ask about time, we hear we don’t know. I hate this answer. It makes me want to scream, cry, and pull my hair out.

We hit this point where she appeared to not be progressing as fast. We discussed this with the neurologist. He wants us to see another genetics specialist (this will be our third) for another opinion and potentially more testing. I had to ask, what will this do? Will it make a difference for her or change her outcome. He said, “Most likely not, but maybe he can give you more of an understanding and how much more time she has, it may also help someone else’s child in the future”. My heart and soul shattered completely and I do not think it will be whole again.

This past 2 weeks has been a challenge, Jaye got a virus (not COVID) from our sitter. It has really knocked her on her butt. It has made her progressively worse. to the point that as of Friday, she shakes uncontrollably to the point she cannot hold anything… Not a cup, spoon, her lion, absolutely nothing. She wants to play outside and do things she has been doing but she is so much weaker that it is so hard for her. Today she would not eat breakfast because she could not pick up a tiny piece of muffin and put in her mouth. At lunch she would only eat if I cut up a cheese burger in to small tiny pieces and fed her small bites, less than dime size piece at a time.

The other thing that has changed rapidly is her vision. Yesterday she couldn’t see anything except shadows. She was sitting next to me on the grass and said where is Noah. Noah was sitting on the other side of me quietly dismantling my flower we were supposed to be planting. Dom looked at me puzzled and I mouthed, “She can’t see today.” When you look at her eyes, they are not focusing on anything, they go in different directions and have this glassy disoriented look to them. , I carried her from spot to spot with me and we talked while I planted flowers.

Yesterday and today, Dom and I looked at each other with tears in our eyes. We both know time is getting shorter and we don’t know how many good days we have left. We are trying to put on a brave face as interact with the world. If you ask us, we will most likely tell you we are fine or act like we are fine……..everything is fine. “It’s ok. We are ok. She is doing good”. When in all honesty, we are both people standing in the room screaming and crying on the inside.

I have heard so many things like…. It will get easier; God doesn’t give you anything you can’t handle; We are all dying some of us just sooner than others; You are such a good mom and have given her a good life; She is blessed to have you…….. the list is so long. I understand when people say this they mean well and they are really just trying to comfort me or let me know they care, but honestly please don’t say this to someone who is watching their child die one cruel breath at a time. It would be so much easier to say, I am sorry. I really don’t know what to say, but I am here to listen if you need to talk or someone to sit with you. Maybe just hug that person.

I have been told many times that I am strong and they are not sure how I do this. My answer is always the same. I am not strong. I pray, I cry, I am angry, I am sad, I am exhausted, but I love my children so much. They are my miracle. They made my saved me, not the other way around. I count each day we are all together a blessing. Life is hard, tragic, and messy, but is is also beautiful, touching and has many blessings.

I know this was a long post. I am not even sure I will post it as it is so personal. My mask is lowered for you to see inside to some of my true feelings, leaving me vulnerable and scared of what people will think but then another side of me is telling me to post it because it is cathartic and it might help someone else realize they are not alone. No matter which way I go with this please keep us in your thoughts and prayers as we move forward one breath, one step, one moment, one day at a time.

As you can see life happens, plan changes and things don’t turn out like we expect them too. I initially started this blog in 2018 to help express my feelings and find myself. I was unhappy with some of the cards life had dealt our family and myself. I though if I wrote about my journey of self- discovery it would help me exercise the demons from my past and the current monsters under my bed. Little did I know…

As many of you know my husband, Dominic and I were foster parents and then adopted 3 beautiful children, 2 from foster care and 1 was from a private adoption. Two of our children have a lot of medical needs and our youngest is a bit hyper. So to say our house can be a bit busy at times it a big understatement, but in all honesty I would not trade the craziness. Sure sometimes I would like the easy button or not to struggle with the simple things, but my husband and my children are what truly keeps me going through the hard days and makes me stand up to fight for children with disabilities, equal medical care for children with disabilities and to get up every morning when some days I would love to just sleep for a week.

I am going to update you on the last couple of years but I am going to do it on several different posts, as so much has happened since 2018. Right now I can tell you we still have so much going on. Dom and I are both working on our MSN in leadership degrees. I was originally working on my MSN in the FNP track but have post COVID syndrome or long haulers, what ever you want to call this stupid crap that has taken control of my life and forced me to make so many changes. I have lost friends, left bedside, changed jobs, the list goes on and on.

Jayetta had a new MRI on 3/8/22. It showed her disease has progressed. She is now partially demyelinated through all three parts of her brain stem and advanced further in her spine. Her tremors have gotten worse, at times she has such a problem even holding a spoon or a glass. She tries to laugh about it but she is starting to notice and get self-conscious about everything. My husband and I are terrified because she has gone through so many changes in such a short amount of time. At times it is so hard to watch, but we are thankful for the additional time with her. Her strength and spirit amazes me. She tries to laugh and be loving to everyone. Several different areas of her brain have been affected, which causes huge problems with her moods. She screams and hits at times when she is upset. She got mad because I didn’t give her soda for breakfast. She lost her temper and literally screamed and cried for an hour. She couldn’t stop. When she had worn herself out, she climbed on my lap and cried saying, “I’m sorry. I’m Sorry, over and over”. I just say and rocked with her and then we played games together. My heart breaks for her. On a brighter note, we have baby chicks, which she absolutely loves. They are currently in my office. They are so tiny, Jaye absolutely loves them. She has to visit them several times a day. She has a favorite one she talks too. She says the bird loves her. I am sure it does.

Ze continues to have this intermittent fever, that no one can explain. However, we are still not allowed to see the hematologist or oncologist, which frustrates Dom and I because if he didn’t have Down syndrome we both feel they would be so much more aggressive about this. He has advanced so much with school this last year. He is engaging with children more. His teacher tells me he is very popular at school. He has a group of friends that wait for him on the playground and they play together everyday. This makes me so happy. I am so happy we switched to a different school with a specific program for him.

Noah is struggling at times. He can be the sweetest little boy and then he flips a switch, becoming mean, angry, and screaming at everyone. They feel he has FASD, however his birth mother swears she didn’t drink with him. I believe her.I don’t know Dom and I are working on it with his physician. Noah is Mr. Personality. He makes the silliest faces and tries to make everyone laugh. You can’t help but laugh at all of his antics.

Dom is our rock. He is the foundation of our family and what keeps us moving. I feel bad because he is the one who does what I can’t which feels like everything. I know God is with us as we move through our journey, at times we all feel the sun on our faces. But other times we all feel the shadows overtake us.

Thank you for listening. Stay tuned for more shenanigans as we take steps forwards and backwards in the jungle of life that we all struggle through.

Maybe I should call this Cris’s Continuous Crabbing , Cris’s cantankerous commentary,

Have you ever noticed how you make plans and you can’t quite do it all?  Well this is me on a daily basis.  When I started this blog I decided I was going to religiously write on a daily basis so I could share and document all of my feeling.  HAHAHAHA.  That didn’t happen.  While I am not sure what happened to all of my days I am sure it had something to do with husband, children, work, dogs and the need for sleep.  🙂  Here is my summary of the last couple of days.

Diet-  Well I am down to 5 pounds, most of water weight we all lose the first couple of days we diet.  However, I am doing the Advocare diet and I feel better.  It is basically supplements, protein,  certain veggies and low carb intake.  I hope I can continue on this kind of healthy eating.  However, I usually sabotage myself because I stress eat.  I need to learn healthier habits….

Gym-  Well speaking of healthier habits.  I did not get my fat a** to the gym all weekend.  I work Friday, Saturday and Sunday in the ER.  I work 12 hour shifts, so the gym is closed.  However, I did not walk or do anything but work and play with my kids.  I am not sure how to change this.  I am forever drained after work.  Any ideas?

Lastly work-  I really tried to stay positive.  However, by Sunday afternoon this was gone.  I am not sure I should really put all of my thoughts about work in writing to the public.  Some of it would seem harsh.  However, I will say nursing can at times drain you to the point you are jaded and tired.  It is hard to deal with everyone at their worst.  I chose this profession and most of the time I love it, but I have seen so many changes in humanity.  I get tired watching people die because of poor choices such as drugs and alcohol.  It is hard watching a mother did by her child’s bedside because she overdosed on illegal drugs for the 10th time, all the while begging her child to get help.  It is hard to watch a domestic violence victim ask for help and after working hard to get her safe she calls the significant other to pick her up.  It is hard to watch the children come in with abuse and neglect.  Most of this I can deal with, I am actually very honored and privileged to take care of your loved ones.  It is just somedays are harder than others.

Thanks for letting me vent.  I am hoping to create some kind of schedule this week for myself.  I am still trying to figure out how to fit the gym in my schedule.  Any ideas.