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.

The tests came in and I never felt relief like I felt before in my life.

After the eight plus long weeks of waiting for the tests to come back. We had our next appointment. This was when Meagan was about 15-months old. They were all negative. We were so relieved. But most of all I was angry. I felt that the doctor should not have given us such bad news when he did not even have the genetic test results to suggest such a drastic diagnosis. How could he give us basically a death sentence for our daughter and act like it was no big deal. I went back to her family doctor and asked for a referral to a different doctor. I never waned to see that doctor again, I was horrified. So our daughters doctor referred us to another neurologist who ordered more genetic tests and MRI's. While we continued our regimen of pt,ot and then speech therapies weekly. For some unknown reason over the next six months my daughter started to lose all her skills and was no longer able to hold her head up like a newborn infant. That was when things really became scary. She could hardly even say mom anymore and she cried constantly. I could not even go to the bathroom without her crying nonstop. It was a very scary time. I started to believe that maybe that doctor was correct and I was once again going to lose my child. Adam and I went back to the specialist and for the next several months they ran every test known to try and figure out what was happening to our child. She went from being slightly delayed to being severely disabled in a manner of months. It was terrible. Finally after two plus long years of testing and multiple brain scans we were referred to a metabolic specialist at Children's Hospital Seattle because that was the only test that came back slightly abnormal. He was wonderful and spent a large amount of time talking with us and my in-laws about how complex the human brain is and that figuring out what is wrong is the equivalent of finding a needle in a hay field. He also said she did not have any disorders know to man at this point and that was actually a good thing because if she did it would always be something that was very bad. The only diseases they know about the human brain are bad and we did not want that no matter how troubling not knowing was for us. He said what we should do is just take our child home, love her and continue with the therapies we were already doing, unless there is another radical decline. It was the best advise we were ever given. We stopped all testing and gave her a childhood. We still had routine check ups with the neurologist, but no more blood tests or brain scans, no more sedation. We were going to do everything in our power to make her happy and feel loved no matter what. When Meagan was about three we found our current caregiver who has been such a wonderful addition to our family. I know technically she is of no relation but she is to us. She has been with our daughter since she was about three and our daughter is now twelve. Our children have grown up together and love each other. Its wonderful to have someone like that to care for your child. I know she is loved like I love her. Meagan is twelve now and has made alot of improvements, she will be wheelchair bound and has severe speech delays but I think she will only continue to get improve. I am realistic that she will never walk and be completely normal but I will continue to have high hopes no matter what is thrown at me.

My Life as a mother of a disabled child

Life is difficult and sad most of the time but every day I make myself find at least one positive fact of the day. Today when Meagan came home the first thing she could say was hug mom hug. She would not stop until I picked her up and put her on my lap kissing her and hugging her. She kissed me constantly and laid her head on my chest then calmly said food mom food. I had stopped and got her, her favorite food chicken nuggets and french fries. She is so special and good in every way. I love her so much sometimes it hurts.

Lets start at the beginning when we started to noticed Meagan was different

When you are pregnant you fantasize about your unborn child and all the possibilities but never do you know what can really happen. Meagan was about nine months old when her doctor said he was concerned that she still had not crawled or sat up. I wasn't worried because I figured it was because I wanted to carry her everywhere and that was her way of keeping things that way. But I was in denial. Denial is like a drug, once your hooked you can't change the way you feel and see things. For my husband he was devastated that she had to get glasses. Meagan was nine months old when we noticed she was a little cross eyed. Adam took her to an eye doctor and he said she needed glasses. Adam took care of this but he was devastated because he had to wear glasses as a child and children are cruel, he did not want her to go through this. The first night she wore her glasses he got really drunk with my cousin Scott. I came home from work and we went to Fred Meyer to pick up dinner and Adam was wandering the store, drunk and crying. I have seen him cry three other times in our lives together, at this point we had been together five plus years. The first time I saw him cry was when his grandfather died, then when we got married and the third was when our daughter was born. To see him so devastated shook me to the core. He is always so stoic and quiet about everything. It is not often he shows his feelings like this. I remember going to the  furniture department and sitting in the chairs and holding him when he cried. It was a profound moment. He kept saying he ruined our child because he gave her his vision. I told him no you didn't its my family that has the cross eyed gene, my sister was born with crossed eyes and had to have surgery and that it was no body's fault and that she is perfect, I told him to look at her, she is perfect. He finally came around, but that was the first of many moments in Meagan's life that were scary. During this time we lived in Renton and were away from his family for the first time, we were alone and felt like we had no one there to help us. I had just started a new job and could not miss any work. Adam was laid off alot working for the union so he was home with Meagan alot. About two months later a job came available in Tacoma so we moved back home where we could have the support of Adam's parents. They were always the ones who helped us through everything during this point in our lives and still do. Meagan was sick alot the next few months with ear infections and other minor illnesses, but we were on the edge. I started to take her to doctor for everything and finally the doctor referred us to Mary Bridge for a physical evaluation. The therapist we worked with noticed other problems and we started the testing process to figure out what was wrong with our angel. The first test she was given was a MRI. This was especially scary because of the sedation. Anytime you are put to sleep its scary because there is always the chance that you could not wake up. Also there was this other little girl there. She was severely disabled. I remembered watching her and holding my baby thinking I felt so sorry for that little girls parents. She was in a wheelchair and had to have her mouth suctioned because she couldn't breath and was too sick to receive her scan. I was in tears watching this beautiful little child get suctioned. It was awful. I thought to myself, will I have to go through that someday? Then came the needles. They had to put in a IV to administer the drugs to put her to sleep. She cried when they stuck her with the needle, but smiled as they administered the anesthesia, which was a relief to me. We went to the cafeteria to wait while she had her scan. It was over quickly and she woke as happy as she went to sleep. I held her relieved she was awake and made it through the process. The nurses said we would not know what the scan results were for a couple of weeks and then we would meet with the doctor and he would go over the results. After a couple of weeks we came back to meet with the specialist Dr. Tripp at Mary Bridge Children's Hospital. The fist thing I noticed was that there was someone else I did not know in the room with us, which instantly made me uncomfortable. The doctor started telling us about her brain scan and what he seen in the results and talked about a white brain matter abnormality. He said he was going to diagnose her with this disease called juvenile onset mitochondrial leukodistrophies. At this point I pretty much blanked out everything and had to get out of the room. I went into the bathroom and cried. Once I was composed again I came back into the room. Adam kept asking questions like, "What does this mean for her future?" "Will she live long?" I couldn't take it anymore so I played with my daughter and cried silently to myself, feeling lost and devastated. "How could things have turned out this way?" "What did I do so wrong to deserve this to happen to my child?" The strange women in the room with us was a social worker, apparently when a doctor gives parents bad news about a child they are there to make sure the child will be cared for and not neglected. I was offended by her presence in the room, because I loved my child more than my own life and would give my life at any moment to give her a normal one. The appointment was over and we went home numb and confused. I couldn't even process what was just said to me, so what I did was look it up on the Internet and what I found will forever horrify me. The doctor just diagnosed my child with a death sentence. I cried for days. I had to go to work putting on a happy face when the truth was I was dying inside. It would be eight weeks before we would know if she really had this progressive neurodegeneraitive disease where she would become quadriplegic, blind, fed through a feeding tube and then eventually die. I had actually called my insurance agent and took out a life insurance policy for Meagan so that Adam could be taken care of when she died, because I knew that when she died, I would soon follow. I could not live in a world that did not have her in it. I had it all planned out. After her funeral I would go to sleep and never wake up and the insurance money I bought would take care of Adam the rest of his life. I knew this would devastate him but if she had this disease it is only past on by mothers and that would mean I was a carrier and should never be allowed to have more children and I wanted him the chance at another life and to not be stuck with me. I was damaged and felt the world biggest failure. You are put on the earth to procreate and I could not even do that right. It was the longest eight weeks in my life and I would not have made it through it without my husband.