Thursday, July 31, 2014

Lung Surgery and Cancer Suck, especially for a 15 yr old... :(

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!

Tuesday, June 17, 2014

The Big Mind F**K

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!

Wednesday, June 11, 2014

Do You Really Know??

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.

Tuesday, February 12, 2013

Terrified With Writer's Block

It's been a while, I know but so much is going on and it never seems to give me a break. To make matters worse I have some serious writers block and that makes writing VERY difficult. Lately doing anything outside of typical routine is torture. I am not sleeping well, have zero appetite and am at a complete loss of words. What started as "Autism" has hurdled into huge medical problems and some of which they can not fix. I just want my baby to be ok. I want the damn doctors to get their heads out of their asses and figure out how to help him. I can't stand seeing him deteriorate in front of me. His color is changing and most days he is quite pale. In the picture below he was sleeping under his blankets(face and all) so his cheeks are flushed but the color around his eyes is what his complexion has been. Isn't that a little scary? Doc says his neurological functions are not good but can't determine what is causing it and wants the muscle biopsy done asap. I AM SCARED!!!!

Monday, December 17, 2012


On Friday, December 14, 2012, a horrific thing happened at Sandy Hook Elementary School in Newtown,CT.  A shooter forced himself into the school and opened fire killing 20 students between the ages of 6-7 along with 6 adults. He also killed his mother before going to the school. It is very heart breaking, many young lives that just began were ended way to soon. Out of all my fears as a parent, never would I have imagined this. 

My son is 6 years old and he has Autism. When I send him to school I expect that he comes home safe and sound. Some days, I haven't wanted him to come home because of the struggles and overwhelming stress. Today, I feel guilty for that; so I hugged him a little tighter and a little longer knowing that some parents will never get to see their child come home. For some parents, the only thing left is the shoe that they couldn't find a match for before rushing for the bus, unfinished Christmas preparations, the Legos on the stairs, and stains in the carpet. I can't even imagine the pain they must feel. 

In the past year we have come so far in gaining respect and acceptance for children on the ASD spectrum.  In light of these events there are new fears that are now coming up and existing. Our children have always had to deal with ignorance and misunderstanding. Media has brought this to a new level. Whenever events like this occur everyone grabbles trying to come up with reasons why. Sometimes, it is bullying, abuse as a child or mental instability. This time, the media chose Aspergers, a developmental disability characterized by difficulties in social exchanges and repetitive patterns or behaviors. This is a form of autism. It has always been my goal to spread awareness and understanding. 

On a personal level, with two boys on the spectrum, I have always wanted to gain more acceptance for my children.  This is because of the lack of acknowledgement and understanding people have towards children like mine. Many do not understand but make assumptions that the behaviors the children display are simply due to a lack of discipline. 

The reason why this is affecting me is because of a situation that that arose on Saturday. My daughter sings in a youth group and we were at her concert. I allow my son to use my camera during the performance to help keep him calm. I over heard a woman complaining about my son, so I took him out of the room. During the intermission I approached the woman, apologizing for my son disrupting the performance and explained he was autistic.   She immediately understood. The part that bothered me was the comment made to me regarding my explanation. Someone approached me saying that I should be careful what information I share with people. I have not censored his diagnosis since I came to terms with it and that is exactly what I replied back to her. It wasn't until I got home that evening that I understood why she said that. She was looking out for my son's safety because of the recent media frenzy. Today many parents fear sending their children to school and out in the community as others may perceive them as dangerous people. They may notice behaviors and lash on him angrily just because he has a neurological disorder. Yes, neurological, not mental illness!! 

I am angry that Aspergers has been brought into such a gruesome situation.  It hasn't been confirmed by doctor's which makes it all speculation. Speculation by a group of peers that may or may not have kept in touch with him since school. Speculation about when he was "an awkward teenager". I don't know what teenager doesn't go through those "awkward" moments, but this is how society works.  Society needs to be able to make sense of a senseless act of horror.

The stigma that everyone on the spectrum has to live with, is now larger and the fear is greater.  9-11 was yet another disastrous situation that occurred and the same domino affect happened. Anyone who wore a turban or looked middle eastern was targeted; not because they were bad people but because they fit the description.  I have the same fear regarding children on the spectrum. Do I still spread awareness in public or is it dangerous? Is this going to cause unnecessary fear toward my child? Will there be more bullying? Are hate crimes going to occur? Maybe I should stay inside to avoid the stares and comments, but what would that solve? Nothing!!

 We as parents need to be sure not to allow our fears to take control. If we allow this to affect how we spread awareness it will set us back 20 years. Now is the time to say NO, I will not hide away! These are wonderful children and we will not hide their diagnosis or abilities away for fear of others having the wrong information. These are our children and we MUST stand up and fight even harder for them.  We must be understanding of other's lack of knowledge and continue to provide accurate information. We must be willing to keep moving forward in our battle towards research, understanding and acceptance. We are the voice for these children. We are their advocate and no one can change that. 

I want to remember all of the precious gifts that were lost. My thoughts go to their families, friends, and community. I also want to send my thoughts and love to the children, teachers and staff at the Sandy Hook Elementary school who survived this tragedy. My thoughts go to the families of the wonderful staff that lost their lives protecting our young children. There is never any way of knowing what tomorrow will bring so, hug them a little longer, tighter and always tell them you love them. 

Sunday, October 21, 2012


Yesterday, I probably made myself
look like a complete fool!
Yesterday I had an amazing day with my kids.
Yesterday I laughed when my daughter fell in mud
instead of thinking about the huge mess.
Yesterday, I tried so hard to ignore
all the struggles they endure.
Yesterday, I focused on all
the wonderful moments with my kids.
Yesterday, I struggled not to cry
as I bought a pack of Pull ups for my son.
and yet I still feel as if I may have failed....

I got Pull-Ups for Charlie. I didn't tell him what they were and I didn't go to the store, walk down the baby aisle,  and spend 15 dollars on a pack to try it out, but I was at a yard sale and they had a pack sitting there and I made a HUGE deal about it as if it were the first time I had ever seen them. 

Then I said, "These are the ones I was looking for, aren't these the things they made JUST for BIG boys?" The mom gave me the knowing smile and said, "Yup mom those are only for special big boys!!!" So, we tried it last night. He wore one over his underwear, because he hates how they feel on his skin. I stressed to him that we were only trying to protect his bedding and stuffies. It worked and he didn't have an accident. I am certain he will understand better when he wets as he will realize that his bed does not have to be stripped, which upsets him every time. 

However small of an issue this may seem, for me it was very hard. In the last year I have been introduced to a whole new level of special needs. We now have an adaptable chair, a sensory swing in the house, AFOs for his legs, an adolescent stroller, a special car seat, special dinnerware, and Pull ups. It has been very emotional. But, what is the difference in the pull ups when he already has all of the other equipment in place? NONE, it is just another aid to help him cope and handle life with the struggles he faces. It is a tool that will help me as well, the laundry is piling up and never seems to end. My heart and mind are open and I will do whatever it takes to give him some dignity. He definitely deserves that!

Friday, September 21, 2012

Ready for a Flashback?

I like to sometimes link up to a meme as it prompts me to write and post. Something has to motivate me right? So Flashback Friday... hmm..... Going back through the years has been tough lately, but sometimes it can be wonderful.

My babies have grown soo much!!!

Chucky Cheese





Just a Little Update

Good Morning!! I wanted to give a brief update as to how things are going. I know I keep saying I am going to be more consistent on my blog but honestly, it isn't a commitment that I can keep. I cant seem to get enough time to sit down and write. I do however try to keep everyone up to date.

Charles has a clinical diagnosis of Mitochondrial Myopathy. This means he fits all of the symptoms and his bloodwork has also come back with abnormalities. More testing and trying to narrow things down. His behaviors are getting worse and I am unsure whether this is because of him being so tired or due to other issues. I guess time will tell. He is still on the waiting list for Intensive therapy. It seems to be taking forever. 

Yesterday his service coordinator called to tell me how it was all going and stated that he is a high priority case. Great news for us because that means they will be looking at his file soon. (Hopefully befor mommy loses her mind.) I met his new therapists and teachers and they all seem great! I am excited to see what he accomplishes this year. 

Early next week he goes to be casted for his braces. He will have articulated AFO's. We recieved his stroller which will really come in handy. Just happy that some things seem to be falling into place. It has been another really long and trying year. I sure hope it calms down really soon. 

Friday, September 14, 2012

Special Needs Moms Are Bitches

This post is not in any way 
to offend anyone. Please read it
fully before getting upset!

This post came to exist as I was chatting with another special needs mom. We were talking about my "new" approaches to the doctors and I said, I sound like a Bitch. Somehow that has lead to this post.

As a special needs mom, I encounter many battles. Battles with my children, doctors, teachers, and even family members. We fight for every service our children need and every right they deserve. We fight for respect and acceptance. All this fighting has made me a Bitch. I have capitalize it cause it is my title. Don't call me Ms. Long, call me Ms. Bitch. I take no offense and I pride myself with that title. I know I am not the only mom who has become a bitch by default. It isn't even just because of the struggles, I now bitch about everything.

For years I bitched that my son wouldn't speak but now I bitch that he won't shut up. Seriously, it really does get annoying when a child continually repeats them selves over and over and over again. It isn't just the repeating because my son, when he talks, takes FOREVER to finish a sentence. It takes so long I describe it as constipation of the mouth! I know many parents would do anything to hear their child talk and most of the time I love hearing it, but sometimes it just gets on my nerves. I am a bitch!! My boys do NOT have volume control either so if they are standing right next to you they still feel the need to shout. Buddy talks loud and non-stop, sometimes so fast you can't understand him. It must sound as if I am being ungrateful but I am not. I am just living up to my title!

Many people say that we are our children's advocate... This is true, but we have to be a bitch to get it done. We can't sit in a room full of highly paid professionals who dont want to give our children what they need and be sweet and kind. We have to fight for what we know is right. When papers get lost or insurance claims denied, we have to fight for justice. All of this fighting becomes a second nature. It isnt just for medical and school stuff, but for ignorance too. I have learned to know when I can be a bitch because a grown adult never learned acceptance.

Having to be a Bitch so often has caused me some issues though. I find myself bitching about everything now. I actually have to monitor myself and calm myself down now. I have bitched because the milk was put in the wrong fridge. The funny thing is there isn't a pre-determined fridge for anything as long as its in the fridge. LOL... Well, I hope I haven't offended anyone and if you ever run into a woman with the front of her hair graying, a 6 yr old screaming and kicking walking with three other children, who looks really bitchy, you have probably met me, or another special needs mom. So please, think about what may have made her so bitchy. She probably has a good reason, I know I do.

Sometimes Looking Closer Is Hard To Do

I take a lot of pictures. I just love doing it. I love being able to look back and see where my children were and where they are now. It is difficult to gauge it when you are constantly in their presence. Ever notice how your closest friends who see you on an every day basis may not notice any weight loss or gain but when you see someone you don't see often they will notice it? That is how it is with our children as well. We keep a wall in our home where we measure the children's height. It is amazing to see how much they really have grown over the years!

I have been watching Chucky Cheese very closely lately. I watch the way he walks, the way his nose wiggles when he sleeps, the look on his face when he is excited. I am just completely awed at how strong and adorable he is. But, what I don't see so well, unless it is pointed out, is the losses he is obtaining. I think I try to overlook all of that. Not that it isn't being addressed, because we regularly go to the doctors and many specialists, but, I can't focus on it. I need to keep moving forward and enjoy him for who he is. This whole thing can be pretty depressing.

I got a phone call the other day when C.C. was at his dad's house. It was a friend who was a little concerned. She had seen my son walking with his dad but he was walking much slower. You know the picture, the dad has the child's hand and the child appears to be being pulled along behind them. C.C. is NOT supposed to be walking long distances. She was aware of that but it wasn't the main concern. She asked me if I had noticed his legs seem to be very skinny now. I know he looks thinner but she was saying his legs seem much thinner than the rest of him. I know in my heart she is right. I know that when I look back at the pictures I will see the same thing. I know that his legs are almost always multi-colored (bruised) anymore because of him falling so often. But thinner, I am having a hard time browsing through photos to even compare.

Which is why I decided to write this post. If I do it this way I don't feel so alone. Maybe it wont hurt so bad. Maybe, I will hear some supportive words and encouragement. Just maybe.....