Round 2.0- Catching up with the Stoltz’s

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,