Autism As A Whole

For those who are not aware, my family was hit with a medical emergency. I think I need to start at the beginning but it is hard to determine when that was. About 2 years ago my daughter suddenly had an onset of asthma. It seemed to have worsened within a year. Her pulmonary function tests were at 48%. We were seeing multiple specialists and they all said it was asthma. Fast forward to July 1, 2014.... Krystal was extremely tired and laid down on the couch. Her breathing was very labored and she was in a lot of pain. I rushed her to the er where they took a chest xray and determined she had a pneumothorax on her left side. They inserted a chest tube and transported us to Albany. They transported without suction! When we arrived they did a CAT scan which showed a blockage. The blockage was a golf sized tumor blocking airflow to both the upper and lower lung. We spent 5 days in the PICU. While in the PICU she had a bronchoscopy to clear her airway, a toilet broncoscopy to clean out phlem as well as debulking to take another biopsy and clear the airway more, and the chest tube removal. She was ready to go home! We were discharged thinking we would have biopsy results within the week but it didn't happen. About a week and a half went by with both myself and the primary calling everyday and we finally got results. The tumor was malignant but they didnt know what kind so they had to send it off to a better hospital. The other hospital said that they didnt have a large enough sample but again it was malignant and seemed low grade. They also said they thought it was a salivary gland tumor. We were told to have her exercise her lungs. This made her have a lot of pain and she was very off balance and dizzy. She is still extremely tired! Today we received another phone call regarding a recent CAT scan. They feel they need to remove the entire lung as it seems there are more tumors encased in the lung. They still feel it is low grade and they said that they thought they were all salivary gland tumors. I cannot wrap my head around this.....

After many opinions, everyone has come to the conclusion that her left lung must be removed. My Mama Bear instincts are numb. I wonder if I am making the right choice and I know that the consequences of my choice falls entirely on me as a single mom. I am so scared but I need to stay strong for her. She told me that she would rather go through chemo than possibly lose her voice. She has an amazing high soprano voice and singing is her dream! They all seem to think that we are dealing with a salivary gland tumor but they are not certain. There are more than one tumor and originally they were only dealing with one. They will run more biopsies after the lung is removed and she will be followed up with oncology.

We went to the doctors and surgery is scheduled for August 4th. I really thought that knowing we were moving forward would make me feel better but now I dread that date. The thought of wheeling her into the operating room and giving her that final kiss before surgery really scares me. I hate this whole process. She however seems really calm about it all. I wonder if I would feel differently if she were reacting in some way. I feel like I need her to need me. When they are really little they need kisses and they need you to hold them when they are sick but she is so distant from it all. I have a counselor set in place for her whom we will meet on August 1st. I hope that will help her through this. Life is hard enough for a teenager to cope with but when you add a serious health issue it just intensifies it! I have faith that she is a strong girl and she is a fighter. I am just a nervous nettie!!

As the days creep closer my nerves twist a little more. I would think it would ease a little with all of the support and hearing success stories. Something deep in my gut just feels a little off and honestly, I hope that feeling is wrong. I hope they go in and find exactly what they "think" they will find and nothing more! Fear drives me in many ways. I find it keeps me on my toes and makes me a lot stronger than I feel. Krystal reminds me every morning how many days we have till surgery. I try my hardest to hide my fear and emotions regarding it all.

Our family has been through so much in the past 8 years and this just seems so damn surreal and unfair. How can one family go through so many hardships? Where is my light? Sorry if this is such a somber post but I just needed to vent and this is the only way I can deal with my emotions.

Krystal is an amazing 15 year old. She has two autistic brothers and both have other medical conditions as well. She copes with the autism, tourettes, Cri Du Chat, and Mitochondrial disease, and she does it with a smile! She treats her siblings with such love. Yes, she can be that typical teenager that you want to hang by her toes but she has a love that cannot be defined in words. When asked in the hospital "If you could have one person visit you, who would it be?" She answered her youngest brother Charlie. Charlie is the hardest child to have a relationship with as he is very autistic and can be quite mean. But... She loves him.Her sister Jocelyn and her have become such amazing advocates and they also love each other beyond words! Jocelyn hasnt left Krystal's side this entire time! I am just completely amazed at the young lady that I have managed to raise all by myself!

My sister is California started a GoFundMe site to help with the costs incurred during this difficult time, you can find that below. I would also like to invite anyone to send her cards of encouragement and love to help her have the strength for a strong and quick recovery.
The address to send cards is: 
PO Box 584, Hurley, NY 12443, 
and they can be addressed to Krystal Long.
Thank you and much love!

My mind probably looks a little like this;
and I don't do drugs but within the last 8 years I seem to have lost so much cranial function it is insane.

I make coffee and forget to drink it, I have left my keys in odd places, lost large amounts of money, and forgotten about many important dates.

Early onset Alzheimers?? Most likely not! Stress does many things and then your body sends warning signals out to inform you that the stress is too much. It could be memory loss, pain or even headaches. Your body has to cope as well and that is how it deals with Stress.

Does any of that rubbish help me?? Nope! I know I am way too stressed but I do not know what I am supposed to do to relieve that stress.
My stress will not go away but I can start trying to alleviate some daily stressors and take some time to relax at the end of the day! 

My memory isn't the only thing suffering though. Emotionally I can not handle ANY extra added stressors. If I lose my keys, I am a blubbering mess. If I can't find the hairbrush, tears.... Ugh. Last night I went into the living room to lay on the couch and tripped on a glass full of water and it spilled all over the floor. What do I do?? Stomp my feet and tears!!! Ugh.. This woman needs to find a human dehydrator cause I am sick of tears!

So, emotionally I think I am shot but we must go on and continue going! I will be okay, I just have to reground myself and find ways to cope with the insanity and the constant stress that comes with parenting2 special needs boys, one being medically fragile as well and two teen/preteen girls !
People wonder why my hair is almost white!!! Every strand tells a story!

Every day holds an adventure they say..... Well, with children like mine that is most definitely true. So much happens and I feel like I am on a never ending roller coaster. I have days when all I want to do is cry and the next day I might be fine. People look at me and ask me how I manage and others tell me how strong I am, but they really do not know. Unless you walk down my path, will you ever understand??

My eyes shed many tears, yet you feel I am strong. My heart hurts beyond any pain I have ever felt, yet you feel I am stronger. My mind shuts down and I can't remember and it takes notes, alarms and friends to remind me of things, yet to you, it appears I am managing it all. My house is cluttered and I have no clue where to start. There are days I feel like my whole life is falling apart! Strong??? It isn't all strength. I don't really have a choice. I do it because I have to!

When I gave birth to my four children I vowed to each of them that I would NEVER give up on them and I would ALWAYS be there. No matter what life hurls at me I cannot stop. Sinking is not an option. I wish everyone could really see how my mind NEVER shuts off. I constantly wonder what more I can do and how I can help them.  Was there something I could have done differently and Is this my fault run constantly in my head like a hamster on a wheel. If only everyone really knew.

It takes a lot to write and it is hard to express how I really feel about it all. My son appears to be in good health and with all my heart I wish that were true. I wish the doctors could figure it all aout and this nightmare could be over. But, Reality is that this is a path I must take, a road that needs to be traveled. There has to be a reason I have to endure this pain. You might think this is about "God", and I guess in a sense it is something like that. Whatever "God" is for you, I believe in harmony, spirits, energy and fate. Whatever is at the end of this, there is a lesson to be learned and I will be a little stronger even when I feel the weakest.