Now the doctor's want to start all over again with new genetic testing. Ahhh!

It has been several years since any testing has been done on Meagan and now the doctor's want to start all over and re-due every test they have already done. But they also want to do muscle biopsy, which I am terrified about because they take a piece of muscle and test it. I don't want to put her through that pain, its very scary. I almost don't want to know. We are happy right now and I don't want to do anything that will change it. However, if she does have something that is life threatening but manageable I want to do everything I can to give her long and happy life. Decisions, decision, why can't life be easy? I am also scared to know the truth, what if she does have a genetic disease? That means we definitely won't be having anymore children. That makes me really sad. I always pictured us have two children hopefully a girl and boy. But that is not the cards that we were dealt and I will have to be a big girl and do the right thing. They are going to start out with the blood tests again and more MRI's. I know its going to be fine but there is nothing worse then not knowing and waiting for all the test to come back negative. I am only going to work with that thought process because anything less would be a dent in my armor. I love my daughter more than my own life and would give it without a single thought if she could have a normal life. Why did this have to happen to her. I remember when she was a baby and I used to tell everyone they better keep on Meagan's good side because she is going to be the first female president. I'm sure every parent feels this way about their children. Our children are our legacy. One thing I have learned in the last six months is that I am even stronger than I thought and my future is going to be limitless. I know this and I will work my ass off to get it! But still in the back of my mind I am terrified to get bad news. I don't know how I will deal with that. I can't even imagine a world that does not include my baby.

How do you cope with death when there is no closure.

It has been ten days since I found out my father died. I am lucky I have a very strong family there for me. I am recovering from spinal surgery and every time I cry it hurts so bad, I cry even more. All I can think about is my dad. I dream about him every night. I woke myself up because I was talking and crying in my sleep. I am miserable because of the pain from my surgery and the pain of my loss. My dad used to call me his short cake and when I was little he would take me to work with him. He drove metro transit and I used to love going to work with him. Riding all over Seattle, boring at times but it was fun to be with him. I missed him alot after my parent divorce, so every visit was precious to me. He used to stop the bus a take me to lunch at this little sub shop even though he had passengers. It was hilarious the passengers would get so pissed off but he would just laugh and take me to lunch. I loved this time with him, being the youngest of three, I never got as much one on one time with my parents. I remember when my grandpa was still alive and my dad was living with them in the third bedroom he would let me sleep with him. I felt so safe rapt up in his arms. My dad was a big guy and gave the best hugs. He would wrap his arms around me and say "MY BABY! MY BABY!" I always felt so special when he did this. I have been trying so hard to spend my time either being completely busy so I don't think about him being gone or I spend the rest of the time trying hard to only remember the good times. The hard part is there is alot of bad times and they cloud my brain. I know its not healthy to focus on them but sometimes I can't help it. I am so pissed at him for dieing and not letting me say good bye or save him. I could have given him part of my liver and he could possible still be alive and that is what I am having a hard time living with. If I had made more of an effort I could have saved his life. But I got busy raising my family and being stubborn and now my dad is dead and I can't do anything to change that. I don't even have any pictures of us together except from my wedding.

It  has really hit me harder than I thought it would. I know with time the pain will fade, but I don't want it to because then I will really forget him and that may be actually worse. I hope he is happy where ever he is and I truely hope I will see him again. But for now I am going to keep on raising my family and honor his name my  being the best mother, wife, sister, best friend I can. I am going to college in two weeks, which is really exciting. I know he would have been proud of me for this. Starting over with my life is really scary but I have a really good feeling that I am making the right decision and it will be very rewarding to go to college when I was never able to before. I am starting all over again, the beauty is that I have plenty of time because I am still young.

My daughter doesn't really understand that her grandpa or papa as she called him is dead, she is not really able to understand. But when I told her that he is in heaven with her dog chewy that died she said, "Awe cute!" For the first time in a week I laughed which hurt like hell. She is what make my world go round and round. She is why I get out of bed each day. She is so damn special, you would have to know her to really grasp what I am saying. I am blessed that I have such a special little girl and husband. Thank you everyone for your kind words it has really helped me during this very hard time.

How do you say good bye when you did not know your dad was dead?

I just found out yesterday that my dad died. His name was Kenneth Edward Towns 7/18/1949-9/5/10. We had been estranged for the last couple of years. But there was not a day that went by that my heart did not ache for him. I should have swallowed my pride and went over and made amends when I had the chance and now I never will. I loved him so much it feels like there is a whole in my heart. I just got out of surgery and when I was waking from anesthesia I was crying. i did not even realize it but I was crying. My doctor sat at the head of my recovery bed and told me I would be OK. But I don't really know that it is true. How will I be able to forgive myself for not making an effort when my dad was so sick and dying for two year. Granted I did not know he was sick, but I can only live in the what if's right now. I know I am a strong women but I have never felt more alone in my life, even though I have all of my family by my side I still feel so alone. I really hope the saying is true that our loved ones are looking down upon us and watching us and loving us, because I would have wanted nothing more then to tell my daddy, I was sorry and that I loved him and missed him so much. I hope he knows how much me and my siblings loved him and feel the loss of him so deeply, more deeply then any of us thought we would. You never know how much you love someone until they have been taken away from you and you don't get that closure you need. To my family and followers grab on to those around you and never let them go, don't forget to tell them you love them no matter what is going on in your lives. I will never get that chance and that is something I will carry with me always. Daddy I miss you so much it hurts more than the surgery I just went through. Love you always and I will try my best to focus on what the positives were and not the negatives. I am thankful you had your wife to be there for your in the end, I will always be sorry that I was not there. I love you always.

Tragedy strikes my family again, When will this ever stop?

Last night I got a phone call from my mother-in-law telling me to come over that my 11-year old niece Joceclyn's dad past away and they needed me  before they told her. This was around 9pm, so I jumped up put on my coat cried a little and put on my strong face one I learned from my mother. I actually called my mom when I was driving there so I could get all the fear and stress out of my system. I pulled up in front of my in-laws house and the overwhelming sadness was thick in the air. To keep myself busy while I waited for my sister to return from the corner store and Jocelyn's other dad to get here I salted their walkway. Stupid because I was freezing, my hair was wet from my bath I had just gotten out of and scared for the little girls in the window watching me not knowing that in a manner of moments her world was going to change forever. Finally everyone was here and I went on the deck to have a smoke and then I heard the wail of Jocelyn crying and I had to got to her. She was sitting between her mom and dad crying saying she did not want him to die and that she was never going to see him again. Then she would bury her face into her mothers chest and scream out again. It was agonizing. Angie and Kenny kept telling her it was ok to cry and that no matter what her dad would always be looking down from up above watching her and loving her. What makes this difficult is that Jocelyn is disabled she may be physically 11 but emotionally she is more like 5. So we were telling a five year old her daddy just died, how can anyone comfort and make since of it. It was one of the hardest things I have ever witnessed. I have gone through alot in the last few years. But this little girl deserves some peace. After a little while Jocelyn and I were singing songs together from my Ipod and she was playing with my hair and her father Kenny had bought her a happy meal and finally Jocelyn was calm and as normal as she could under these circumstances. I had to go home because my daughter and Aireonna (Joceclyn's little sister) refused to go to sleep because I was not home and they new I was upset when I left. What little angels they are. My husband who is my rock and the glue that keeps us all together was sitting on the couch with Meagan on one side and Aireonna on the other. I knew everything will be ok as long as we all stay together and strong. Now all I have to get through is the very scary spinal surgery I am having Wednesday. Like I said will the stress ever end for my family!!!

All that stress about her procedure was for nothing!

So, yesterday Meagan had another series of injections. She is so amazing! The IV nurse came in to start figuring out which vein she was going to use and Meagan looked me and her dad in the eyes and smiled big then with her other hand she patted my arm to comfort me. She did not even flinch when they put the needle in her arm. She kept eye contact with me the entire time as to make sure I was OK, while her dad entertained her with Tom the talking cat application on his I-phone. The anesthesiologist came in and prepped her while we kept by  her bed and as soon as he injected the drugs, she looked at me again smiled and her eyes rolled back in her head, she was already asleep. Adam and I left the room for the doctors to due their job, I never stay to watch these injections are not pleasant. The whole time I could hear another child screaming bloody murder and it broke my heart. I ask the nurse what was going on and she said his parent refused sedation and the poor boy was going to have the injections without sedation. Horrific. I have had ten spinal injections, because of injuries from last year and they hurt like hell. Now imagine that all over your arms and legs. That broke my heart. We went out to the lobby to wait for Meagan's injections to be finished when my husbands sister showed up to give us moral support and  to be there when Meagan wakes. My husbands family has been to every single injection. It is so heart warming to me that no matter what they are always there for us. Non judging and non-back stabbing. Just there for us no matter what mistakes we have made in the past, no matter what they are always there for us. I really don't know if I could have made it through all these years without them. After about thirty minutes maybe more the nurse came to get us. We came in the room and she was still asleep. I rubbed her back and told her mommy was here and that I loved her. After about ten more minutes she started to wake and she smiled at me then said daddy. She has never wanted her daddy before me. He jumped up and was at her side. I think she just wanted to make sure he was still there. I climbed in her bed and held her thanking quietly she made again through sedation. Her auntie Angie came around the bed to face her and she got an even bigger smile and said, "AUNTIE". It almost made her cry. Out of all her aunts she only calls Angie auntie. She never calls her by her first name, she loves her very much. It took Meagan a little longer to wake up but she did so very peacefully, which is always a relief there have been times where she was crying in her sleep, which always tears my soul up a little bit. After about twenty more minutes she was completely alert and wanting food. They gave her some pudding to take her meds and she wanted Old Spaghetti factory. So as a family we went to lunch and had a beautiful family lunch together. It was a little rushed because of the snow but amazing none the less. We drove home and snuggled up on the couch together and watched movies the rest of the day until I had to leave and pick up the our niece/foster daughter. That night it snowed about 5-6 inches so we stayed home together the next day. Unfortunately, I had to go to the hospital and have my tests done for my surgery next week. On Wednesday, I am have spinal surgery to fix two herniated disks in my neck. Scary stuff, but I will be out of commission for the next four to six weeks. Thankfully my husband will be able to take off the first weeks with me and then my sister Angie and Mother-in-law will be able to take care of me after that. Can my life get anymore crazier!!!!!!

What do you do when there is nothing to do?

If you have never had your child put under with anesthesia it is scary every time no matter how often it happens. We have been seeing a doctor that has been trying out different meds for Meagan and finally got approval from the state to have her botox injections. So every three months we go to the hospital and she gets an IV, she goes to sleep while they inject a very toxic drug into specific muscles to help her muscle spastisity. For those of you that are not familiar what that is. It is when certain muscles in the body never contract or relax, they are almost always flexed. The botox temporarily paralyzes those muscles with the hope of some relief to those specific muscles. We have even had to endure tendon lengthening surgery to her achilies tendon which was horrible. It was supposed to be a day surgery that turned out to have complications. Meagan was having trouble retaining her oxygen level once pulled of the respirator, which is a side effect of sedation. She ended up with medical pneumonia and stay for nearly two days. I stayed there with her of course. It was terrifying not know if she was going to make it or have more issue. Trust me there is not a bad scenario that I have not ran through my head at least a thousand times every time she goes under. Every time she wakes my heart beats extremely fast and I climb in her hospital bed and hold her as the effects of the sedation wear off. Sometimes she is calm and doesn't cry others she cries this heart wrenching take your breath away cry that no parent could stand hearing. Usually as soon as I am in her bed she calms and curls her head under my chin. I bite my lip to keep myself from crying everytime this happens. Thank fully its only every three months. Unfortunately that is next weeks so it has been playing heavily on my mind. I trust her doctors and the hospital but you never know. She could have a bad reaction this time and my life would be over. This drives me nuts. We get there she is tough, I'm neurotic mess, my husband is quiet as a mouse and we end up just fine. She is so sympathetic to me, when the nurse ties off her arm to prepare for the IV she looks me directly in the eyes and smiles. She knows I am scared for her and makes me feel stronger. Meagan doesn't even cry when they stick the needle in her arm. I cry silently so she doesn't know and before long they inject the drugs and she smiles and goes to sleep. Meanwhile my husband and I run and get coffee at the cafeteria and but her a gift for her bravery. She is so special. Every time she does this it proves to me what an amazing child I really do have. In another thirty or so minutes we will be pages back and the procedure will be over and all my fears will be for nothing, but that doesn't change that I will still be completely terrified until it over. I love my daughter she is what makes me get up every morning, she is what brings a smile to my face but most of all she is the glue that holds my entire family together. So I end this story with the though of the day. Who is the glue in your family and why?

When we decided to live one day at a time life became more simple and not so scary.

After we left children's hospital and went home, we were able to breath again knowing that our child will survive. We are still uncertain of how long she will live but for now all that matters it that we have our beautiful little girl and she is our world. Every couple months we would meet with the neurologist to check on her progress and to make sure she is not getting worse. Then finally he said we no longer needed to come and see him unless we noticed her losing skills. Other than that we just see our normal family doctors if she is ill and a Physiatrist for trials on medications and equipment that we need as she grows.  Also to manage the side effects of her tone issues. Meagan has made alot of progress but is still severely disabled. She is actually classified as a quadriplegic because of her limited use of her arms. Its hard to see someone love so much endure so much as a young little girl. Yet be so strong and powerful at times. When I wake in morning I see her smiling face it warms me to the core every time. It helps remind me of what I am living for and why I am on this earth. My only issue has been the dreams I continue to have every night. When we first truly understood that our child would never walk and would be in a wheelchair the rest of her life I starting planning for her safety. I called every fire department that could possibly respond if there was a 911 call from our home. This way if there was ever to be a fire the fire departments would have floor plan so they would know where to go to save my daughter, if for some reason we could not. This is very important to do if you have a non-ambulatory child. I also had them inspect my home for any fire and safety concerns. This is a very good idea for any family because even if you have children that do not have special needs. This way the fire department knows the particulars of your home and can help you if that type of situation were to happen. I highly recommend it. It was pretty neat seeing these firemen come to my home and meet Meagan. Even they could tell how special she is, they were glamoured by her. Everyone that meets Meagan can't help but instantly love her and remember her. But even after doing all this extra stuff to make my home more safe I still have these horrible dreams. They always involve either Meagan or Adam getting hurt or even killed. Sometimes its both of them. The really hard part is that they are so real. I wake up breathing heavy and shaken to the core. Sometimes I even have dreams about Meagan dieing in her sleep and I get up to get her ready for school and she is no longer alive. Its awful! These dreams are so real they scare me sometimes and I will remember them for weeks and maybe even months depending on how realistic the dream is. There have even been times when these dreams are happening and I try to wake myself and can't. Its almost like a dream with in a dream, those are the scariest. Finally my doctor gave me some meds to help me sleep and they occasionally help. But you never forget dreams that are that terrifying. Then there is the occasion I will have a dream like that and it will happen but not as bad as in my dream.  Those are the most terrifying.  The ones that cause me to re-live all the other dreams to make sure none of them could possibly happen. It is a vicious circle. But I think every parent goes through this type of thing. I hope so at least. My doctor said these type of things are completely normal, he said sometimes we live out our fears through our dreams forcing us to face our fears. I don't know about that but they haven't been coming very often lately. The other thing I have been doing that helps is telling my husband about them as soon as I wake and we talk about it. He is so easy to talk to sometimes, I forget that about him. Its his memory that is selective, but that is a whole different story one for another day. For now everyone is mostly healthy except for having the flu, pneumonia, and bronchitis that is.