Time to vent. I deserve it.
Why am I dealt the hand I was given. I don’t understand this. Someone explain this to me. Another thing I need explained is why when we are handed bad news we are expected to put on a brave face and try to act like we are fine. I have done this so many times I don’t even know what real feelings are like anymore.
Let’s start from the beginning and you will see what I mean….
Born to an unwed 16 year old in back woods Georgia…. She kept me for a few months then gave me to Georgia family and children’s services to be adopted. I went into foster care until the most amazing couple adopted me 11 months later. Now, that had a good ending because of the wonderful parents I had am honored to have had. I have always had people ask me what it’s like to be adopted. Well… I have always said that I am so great full my birth mom was not selfish and gave me a life she couldn’t provide. I believe this is a standard response from an adoptee. Again… this is what is expected to be said but not really how I felt. What I have felt since I was able to understand is what did I do wrong? Why didn’t my mom love me? What’s wrong with me that she had to give me away? Now, this is just how I feel but not what I say out loud. This is how we are taught to be. To always show the brave face. What happens to the feelings that I have? They get squashed into the pit of my soul..
Growing up in Georgia was awesome. I had great friends and family with me at all times. At age 8 my world was rocked. My mom got the diagnosis of breast cancer. What this meant to an 8 year old was that my mom was really sick and lost her hair. Very confusing. I remember being at school and trying to tell my friends about it and not being able to answer the questions they had because I did not understand it myself. We ended up moving to Arizona right after. This was hard because my mom was sick and we didn’t have the help we had in Georgia. I remember my dad telling me all the time that I was a good nurse. This made me feel very special and I remember him taking me to a movie to thank me. My mom got better and after 5 years of remission she was called cured by her doctors.
Things got back to normal and life went on. I made friends and enjoyed school. We moved to California for my jr high years. I loved it there. I love everything about Cali. I love the weather, the beach and the laid back attitude. After the 2 years we moved back to Arizona. I got into sports and loved school. Somewhere around my sophomore year things changed. I wasn’t happy, I was depressed. On the outside I smiled and looked great. On the inside I hurt. One day I cut my arm to see if I even felt pain… nope. Instead of it hurting it felt like a relief. It felt like it relieved the pain. A part of me knew this wasn’t normal and that upset me, another part didn’t care because it helped. This went on for a while and 2 of my friends found out and kind of left me. I am sure there was much more to our friendship changing like my iritic mood swings and lying to them. It was a very bad time for me. How did I handle this? I smiled all day and pretended everything was normal and then at night alone I would listen to depressing music and cut myself. Eventually my parents found out and took me to a counselor. Want to know what this lady told me? She said to cut it out. Yep. That was her advice. To stop it because I was just wanting attention. I tried to explain to her the cutting helped me deal with my anxiety and get me though the day. She said that it was not normal and stop it. Fuck her. When I was 21 I was I was watching TV and saw a preview for a discovery channel show that was doing a special on cutters. CUTTERS? What’s that? There is a name for what I was doing???? What? Other people do this?? It’s an actual disorder???? Holy shit! I am not just this weirdo that did this. It said 20% of people do it, mostly girls. So Dr. Hailey Deshazo…FUCK YOU for not making me understand why I did it and for making me feel like a freak. Ok… got off subject..
The summer I started dating a boy I had known since I was 9. We had been friends and had never considered dating him before. We are opposites. I know they say opposites attract but it’s not always a good thing. Stupidly we got pregnant and in March of my senior year I was married. On September 18th 1996 Kerstin was born. How did I look during this?? You guessed it! Smiling. Acting as if everything was great. As if this was the life I had dreamed of. Bullshit. I was miserable. While my friends were going out to parties and getting ready for college I was staying home changing diapers. It’s bad enough that I had to miss out of all the things I wanted to do but having a husband that is like talking to a wall made it worse. Thankfully during this time I had a great best friend that kept me sane. He really did. At night I would cry, curse and wonder how I could have been so stupid to get pregnant. I was keeping it all in so my friends and family would not be sad for me. Down in the pit it goes.
Thanksgiving day 1997 my mom felt a lump in her neck. It was small but enough to cause worry. The next day we went on our annual black Friday shopping trip. This was something my mom and I did every year. That day her neck was sorer. I would make her laugh and we enjoyed the day when all I wanted to cry. I knew her cancer was back. I felt it in my heart. A week later daughter number one was getting tubes put in her ears and our pastor at the time came to sit with us. I told him thank you for coming but today my mom is going to get bad news. My mom had an appointment that day to have her neck looked at. BOOM! LIFE IS ROCKED AGAIN! Cancer is back. It’s back and angry. My mom was able to see her old oncologist. He is great and a nurse that had taken care of her was still working there. This was comfort to us. BUT WAIT….. We were told she was cured. I don’t understand??? How can she be cured and have it again????? ANGER, MAD AT THE WORLD, DISTRUST… but I smiled. I had to be strong right??? That’s what a responsible mom does. Can’t let anyone see me cry or sad or yell. Can’t let daughter one know that this is a bad thing. Instead we made cancer a happy thing, a fun thing.. Why is grandma in the hospital for a month for her bone marrow transplant.. because it’s a happy fun thing… NOT!!!! During this having the most un supportive husband in the world gave me nowhere to cry and process all that is happening.. So where did it go… down the pit…
My mom went through treatment after treatment and stem cell transplant and many drug trials… Made for a long few years. During this time my marriage is a wreck. I won’t go into that but there were anger issues on his side and he did some wrong things. While my marriage is falling apart and I am losing it my best friend says lets go on a road trip. I needed that so much. We got in his car and drove and drove. Ended up in Flagstaff and got drunk. For the first time I felt free. I felt free to have fun and not be scared at home or scared for my mom or scared for Kerstin to know how sick her grandma is and how sad her mom is. We went and saw the sights and truly had fun. I will always love Travis for that. I had started to make some bad decisions and he brought me back on track. This fun weekend could not had come at a better time because when I got home I found out that my mom had a seizure while camping with my dad and Kerstin. Kerstin was the one that saw it happen and she ran out of the camper and got help. So proud of her. She was four at this time. I had just got back from flagstaff and had to turn around and drive back. I got to the hospital and found out that there were tumors not only on my lungs but in her brain. SERIOUSLY! What else is going to happen? I just wanted to die. To know my mom had put up with so many treatments and had been so sick for nothing. Just to have had the cancer spread. We got her home and now get to start new types of treatment. She got to have head radiation to go with all the other treatment. Once again we got to spend Fridays sitting at the oncologist watching the IV bag drip and drip… Again I had a smile on my face and tried to keep it upbeat for Kerstin and my dad. It’s hard enough having a sick wife but I didn’t want him worrying about me too. What did I do… Threw it in the pit with all my other anger and sadness.
Filled for divorce and met the most amazing person. When Gil came into my life he told me that I can cry. He let me cry on his shoulder. He let me yell and say how fucked up everything was. I swear he was sent from heaven. He came at the right time and saved my life. He got to meet my mom and spend time with her. I am so thankful for that. He made me laugh and let me cry. We had hospice called in to help for last few months. They had play therapist come to teach Kerstin how to deal with everything. They had her color and rocket ship. The therapist asked her if we could fill the rocket with cancer where would she want to shoot the rocket to. She said… send it to my grandma she has cancer and loves it. Remember when I said we made it a happy thing.. Well this is the result of that.
Christmas was approaching and I did not want her to die during the holidays.. I never said it out loud but it was my wish. January 17, 2002 my mom left this earth. I was on one side of her bed, my dad on the other and Gil at her feet. We all told her we loved her and that it was time to go… It was honestly the most peaceful thing I have ever experienced. The hospice nurses had prepared me for a horrible death of her suffocating and looking in so much pain… didn’t happen… It was peaceful.. one breath, another breath and then none. I left and went outside and Gil came out and let me scream and cry. I wanted to die. I wanted to go lay down with my mom and die with her. I could not at that point even comprehend a life without her. Gil picked me up and took me to my dad’s and I slept. When I woke up it was time to deal with all the bullshit that comes with death… the pastor visiting, the people calling and stopping by, the flowers, going to the mortuary and picking out urns…. Is this real? I shoved all emotion way down and smiled. Thanked people for the endless amount of words… words that are just crap. Words like she is in a better place…. Seriously… what is better than her being home with us? Sometimes it’s best to be quiet then to say stupid things like that. But… what did I say? Oh.. Thank you so much.. it’s nice of you to say that… UGH.. Just wanted to cry and scream and die.. But wait… there is Kerstin, my dad and Gil… They need me. So… down in the pit it goes….
Fast forward…. Gil and I are happily married and 2 years later we welcome Rylee in the world. It was an easy pregnancy and I loved it. She was 9 lbs 3 oz. and just beautiful. She was perfect. I loved watching Gil fall in love with her.
When we got home we noticed that she was orange. I didn’t worry because Kerstin had also had jaundice. We called and got an apt with her Dr the next day. They saw her and ordered a bilirubin test. Same thing for the next 4 days. Her levels were going up and up. We were waiting on the Dr to call and kept calling to check on her levels. Finally the Dr called us from a Bar with loud music in the background. He said he had forgot to call us and that she needed to be put in a bed of lights for 24 hours at a time except for feedings and when she had to get her blood tested. The levels kept climbing and reached 21. We didn’t know what the levels meant only that she had to do the lights till they go back to 18. We did as we were told and after 9 days they went down. After that things were great. She never cried, never did much at all. We got the occasional smile from her but she was quiet. Things were very good. At 4 months we switched Dr’s because we could not stand the guy she had, especially the whole bilirubin problems. Our new Dr was great great. She said Rylees head was in the 115% category and that she wanted to keep an eye on that. Rylee got sick a lot with ear infections, strep throat and lots of fevers. Fevers, Fevers, Fevers…. At 9 months her Dr was concerned because for being so young she was aggressive, not making eye contact and could do things like snap her fingers and other things that were way beyond her age. We just thought she is very smart! At 12 months her head size was still an issue for her Dr and she ordered a CT of her head. Gil and I were a mess… Why did she need this?? The CT came out showing extra white matter in her her frontal lobes. The Dr said not to be concerned and that she wanted Rylee to be evaluated by Arizona early Intervention. WHAT??? WHY?? So she is quiet, so she isn’t reaching her mile stones… What’s the problem? We did not see the concern and put off the eval. At 15 months we had a very very aggressive child. She was a 1 year old bully. The kids in her in home day care were scared of her. She didn’t talk but she liked things her way. She only ate a few foods but liked them a certain way.. 4 chicken nuggets, not 3 or 5. Had to be 4! She liked light switches.. Rooms were filled with light, no light, light, no light. She loved flipping the switches… on, off, on off… we didn’t care. This was the normal in our house. When we went in for her 15 month checkup the Dr insisted she get evaluated. We did. I still have the paper work and remember the day like it was yesterday… Expression skills of a 3 month old, fine motor skills- poor, gross motor- poor, eye contact-poor.. I said… yeah what’s your point. She said she qualifies for services and I think she should be evaluated for autism. WHAT? WHY??? Not my baby. She is still a baby. That’s older kids… She isn’t like rain man… This lady is crazy. Having to tell Gil this was hard. He too said she is fine. We met with the specialist a few months later and she evaluated her. We sat in a room with lots of toys. The Dr. tried to get Rylee to engage and play. Yeah.. not happening. She handed Rylee blocks and Rylee stacked them up very tall. The Dr knocked them down and Rylee hit her and screamed. She stopped screaming after I fixed the blocks. She did some other tests which was a blur to me and after 2 hours it was over. I knew the answer before we got the call with the results. November 20th 2005.. Your daughter has autism. What??? NO!!!!… How could I have given this to her?? Telling Gil what the Dr said on the phone and seeing the tears in his eyes almost killed me. I decided that maybe that Dr didn’t know what she was talking about and we should get a second opinion. Her pediatrician had talked about a great developmental specialist that had just left a huge Autism clinic and started his own practice. I liked him from the moment I met him. He was blunt and didn’t coat things with sugar. He did a similar eval of Rylee over 2 visits 2 hours each and told me… “mom, she has autism.. so quit denying it and let’s do what we can to make her have the best life possible. My head was spinning… What does this mean? Will she ever talk? Will she get married and have kids and have a normal life?????? WHAT DOES THIS MEAN?????????? I wanted to scream this at her DR…… I wanted to scream and cry and throw myself on the floor but I knew I couldn’t. I became business like… I said.. Ok what do we do about this? I bought every book I could find and Gil and I became model parents of an autism child. We transformed our house to cater to her, we made her a sensory room and Gil even made her a swing to go in the middle of the room. Instead of crying we through our energy into helping her. We got her the best therapists and made the decision to medicate even though it was frowned upon. Funny the people that are against this are not people with the kids. After the shock kicked in and we got into a routine things got better. I should say we seemed better. At night I would look at her and say why? We would go to an autism walk and see all these kids and wonder why…. Why my kid…
We would smile and tell every one of all the things we have learned and try to educate people as we went along. Inside I was sad… I wanted the best for Rylee and was scared I couldn’t give it to her. I knew I had caused this. I myself have it. The more I read and learned about autism I knew the answer. Yes, she got it from me. I have a lot of these tendency’s and compulsions but I can control them. Maybe she will too one day. This is what kept me sane.
During these years Kerstin took the back burner. Not by choice but Rylee had therapists in and out of the house every day and when I got home from work I would work with her. I feel so bad that Kerstin didn’t get to come first then.
Skip ahead 3 years… Kerstin is not well. She is 11 and isn’t maturing. She could not and would not socialize with peers. Her friends left her and she started hearing voices. We took her to Drs and psychologists. She was given the Asperger’s test and failed it. They told me she had a mild case of Asperger’s and that with socialization therapy we would be fine. WHAT??????????? Why is this happening? Two special needs children? WHY? What did I do? Threw it in the pit… and smiled.
The next two years was filled with Rylee having many therapists and Kerstin too. She was getting worse and we had to switch schools for her several times. She was not happy, she was depressed. She didn’t understand why kids didn’t like her. It broke my heart to have to try to explain that the way she interacted was part of the problem. She was still hearing things and her Dr’s said it went from just a phase to now a concern. They medicated her and we got her more counseling. One day she came home from school upset about something some kids had said and she went in her room. She came out an hour later crying hysterically and belt burns on her neck. She had tried to hang herself……………………….Panic… got her to the hospital.. It was a blur.. I know I was there, but not there. They told us they wanted to send her to a behavioral hospital… WAIT… What? Ahhhh…. Ok. What do I do? Where is my mom, I need to talk to her.. This was a sad time for me and it didn’t end for several years. Kerstin was in and out of behavioral hospitals and she we finally got a more accurate diagnosis. Schitzo effective type bipolar disorder.. What a mouthful. Basically it means bipolar with delusions. She hears voices and at one point was seeing things. This broke my heart. Seeing your child crying with their hands over their ears because voices are screaming at her is the hardest thing to watch. I would lie in bed and think what did I do to deserve this… I always came back to the same conclusion. I killed my mom. Yep, I said it. I have discussed this with Gil and my therapist for a while but nobody can tell me differently. At one visit while my mom was having chemo I asked them why it came back. Why one day was she “cured” and now full of cancer. He said that they no longer call anyone cured because the cancer cells still live in the body but can re-activate at any time. He said stress and other things can cause them to active again… Now when I was 18 and got pregnant my mom was devastated. I am not meaning like disappointed or upset.. I mean DEVASTATED… she was a zombie for weeks. Could not look at me or talk to me. I think she aged 5 years those weeks. I put more stress on her with this then humanly possible. One year later…. Her cancer is back and in full effect. I really do believe that the stress I caused her activated those cells and eventually killed her. So… I ask what did I do to deserve these bad things happening to me…. Well now you know.
One thing that has always been positive is that the girls never had issues at the same time. Rylee has bad days when Kerstin has good ones and vice versa. Kerstin was home and doing better when Rylee had a seizure… Full on grand mal.. Scared the crap out of me. I remained calm and called Gil and the paramedics. Talked to Rylee and calmed her down… Got my business like face on and faced it. Guess what? Rylee has epilepsy. Gil also has it so this one was not too much of a shocker and we digested it better. Gil did not do so well with this.. Gil felt that he gave it to her… we would joke I gave her the autism and he gave her the epilepsy.. You laugh or you cry right? That’s what I always say… really what I am saying is I laugh because I will cry tonight when nobody is looking.
At this point what else can go wrong… right? Things have to get better from here… HAHAHAHAHAHAHA WRONG. Out of the blue one day I have a seizure. I had not been feeling good and had been getting a lot of headaches. The paramedics take me to the hospital and I get admitted. They do a spinal tap and find blood in it. Next thing I know I am being transferred to St. Joes. This is all a big blur and still does not know why I was transferred. After a week in the hospital and many tests the Dr comes in as says you had a TIA (mini stroke) and it was from the hole in your heart letting a blood clot through. SAY WHAT??????????????? Is this a joke? So… im suppose to live with this? Well they say you can have it fixed but insurance may not cover it… GREAT… this cares the shit out of Gil. He is always asking me am I ok? If he can’t reach me by phone he assumes the worst. He has fled work and stormed through the door pale many times because my phone was in another room or on silent and he couldn’t reach me. This makes me so sad. I don’t want to worry him. I love this man more than life itself. Making him worry makes me so sad. Hopefully one day he will relax about it but after 4 years.. he still worries.
Fast forward another 2 years.. things are looking up. Kerstin has still been in and out of treatment centers but is now home and doing well. It was summer and we had just moved into the most amazing neighborhood with the most amazing neighbors. For the first time we had good friends and felt like we lived in a community where the girls were loved. One day Rylee had a fever but felt fine… the next day the same thing.. This continued for 30 days. Her Dr ran every possible test possible. Nothing explained it. We also noticed that she was not sweating… WAIT… No sweating and hot body temp.. BINGO!! She is overheating… Her Dr sent her to her neuro. Her nuero had another brain MRI done and once again she has the extra white matter. She also had some staining on the brain near the area that controls her ability to control her body heat. She has anhidrosis. AHHHHHHHHHHHHHH! I have learned that never say, what else can go wrong… EVERYTHING! SO.. let’s review.. Rylee has autism, epilepsy and now anhidrosis… ?????????? My baby! My beautiful baby! Can this be? We have adjusted well and as always done what is best. We will always.. for both girls.
Skip ahead a year… Kerstin isn’t doing so well again.. her meds need adjusting and she still is having issues with socialization. She got upset with a friend and decided once again that life was not worth living. This is her 4th attempt and the 7th time being admitted to a behavioral hospital. They felt the best thing for her at this point is not a 30 days stay again but long term treatment. After consulting many of her therapists and spending many many many hours online trying to find her a good place to go we succeeded. A few days before Christmas last year we drove her to Syracuse Utah. Leaving her was like leaving a part of me behind. I know it was the best thing for her but it also felt so wrong. After 3 months her insurance decided she was well enough to come home. ANGER!!! FUMING!!! How can insurance determine what my child needs. They just know what saves them money. Kerstin came home and fortunately is doing great… It’s been 10 months and I am really proud of her.
One final blow… Remember I said the kids take turns having issues… well.. it’s true. Rylee was really sick in December and January and spent 19 days total in the hospital. She had to have a pic line and NG tube placed. She got better and things went back to normal.. Two weeks ago Rylee got sick. We ended up back in the hospital to find out that when we were here in January. WHAT???? She got a virus while at the hospital… ANGER.. PURE ANGER… Not only did she get it there. They never told us. That has put our whole family at risk. It has put other offices that she has been at risk too. Now we are having to adjust our life to VRE………….
So… back to the beginning.. Why is not ok to show true emotions. Why smile and pretend things are great? I had someone say that all the things that happen to us must not be real… I wanted to clock him. Yes.. this is real. This is my life… Its only sugar coated because that’s what’s expected……
My girls are amazing even with the struggles they have. They both have great personalities and they make our family complete. I have a great relationship with my dad and I love him too with every ounce I have.
All of this has caused my depression to go through the roof.. I lay at night and convince myself to live just one more day…
Mu husband has been so distant.. not sure if its the stress of everything or if its my mental ilness.. He says snap out of it.. I cant…and some days that phrase makes me wanna clobber him… We are growing apart and I dont know what to do or even if I care anymore. Just want to lay in bed…this is just a bit about me.. sorry if I bored you but really needed to vent!