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Saturday, December 17, 2011

Can my life be more difficult!!!

Last week I had surgery again! This is the third time this year and it really sucks. I am doing good this time. Thank GOD!!!!! The last surgery I got really sick, but I didn't get sick this time. I am just in a lot of pain. Christmas is next week and I don't really have any money to buy my husband anything really decent. I got him a couple of things, but I never feel like its enough. He does so much for me. Every day he gets up early and gets Meagan ready for school before he goes to work. He picks up our foster niece Airie from daycare and he works 7-days a week just for us to barely make ends meet. All for me to get well and go to college. He said something to me last week that really stung. He said I am always putting him down and calling him names like stupid or talking bad about him to people. I was really taken back by it, because when I say things like "your stupid" I am always joking and don't really mean anything buy it. But you can never really tell if what you say to someone they are going to take it the way you mean it. I will have to make sure I am more careful how I say things  and in what context I use them in, I never want him to feel that way. But then I also find myself going back to past times that he has said way worse to me, yet I have let that go and it was ten time worse than anything I could have ever said to him. Like my birthday this year. What I have learned is that it never matters what has happened to you, it what you do to others. VERY TRUE!! One thing is for sure, Adam: my best friend, husband, father of our child, lover, confidant, number one supporter, money maker, fixer of all things broken, my piece of mind in the crazy life we live, and most of all THE LOVE OF MY LIFE, deserves to be made to feel important and all those thing I have listed before and I must remind myself everyday this so that he never feels that way because my life would be nothing without him in it. Period.

Friday, December 2, 2011

Hi Everyone again!!!

It has been a while again but life has been really busy. Yesterday, Meagan my little angel turned 13 years old. It is shocking how fast time flies. She is getting so big and so grown. It was really cute, my mom called and I missed her call but she left a message singing Happy Birthday to her. Meagan loved it, she made me play it ten times at least through my car stereo. It was really funny, she sang right along with it and so did Airie. They are so cute together. Lately Meagan has been a little possessive toward me with Airie. But whenever Airie is not home she asks for her BABY all the time. She call Airie BABY. It so darn cute. They love each other so much. It was a really nice day for Meagan. I took cupcakes to school and the school choir sang her happy birthday, she felt so special it was really neat. Then when my husband came home we went to an early dinner at Olive Garden alone just the three of us as a family. The only thing that was missing is that her other grandma and grandpa did not call her on her birthday. First my birthday and now Meagan's, its really sad. They totally forgot Meagan. I can't believe it. Even my friends called Meagan, but our own family didn't even bother to make her feel special like everyone else did. What is even more sad it that Meagan really adore them. She will forget and move on because I will do everything possible to make up for her not having her grandparents. She will never feel that loss again, it really sucked because she asked about them all day long and I had to lie to her and tell her that they would call her or come by and not to worry. But it never came. I told her another lie that nana and papa were really busy with her cousin and couldn't call, they really wanted to but they couldn't. Its so sad, thirteen birthdays and this was a really important birthday, she is officially a teenager!!!! As for me life is the same. I am always the bad guy when it comes to Airie and court delayed for three more months. I have come to terms with her going home and I am fine with that all I want is her to be safe. She is not safe and making constant allegations against her sister of molestation. When Airie is interviewed she doesn't talk and then tells me that her mommy told her she couldn't. It makes me sick to think that a mother could buy off her daughter to protect her other daughter one that needs real help. Its really sad and it has torn apart our family. It will never be the same. When this is over, I am done. I will probably never have a relationship with these people again. We will survive, we always do!

Wednesday, October 12, 2011

God HELP ME!!!!!!

Why does everything in my life have to be so hard? Haven't we been through enough???

I ask myself these questions everyday, and never have the answers. Since my surgeries I have had a serious reality check. Mortality is a B****.  Family is supposed to be the ones you can count on in life, but since I got custody of my niece, my husbands family(not all of his family his aunts have been amazing and we love them so much) have started treating me like I mean nothing and we aren't sacrificing anything. Life for us is very difficult and having another mouth to feed, clothe, and provide for is not easy. Most people would not do this and they take us for granted. His sister called me really horrible names over the phone when he confronted them and then acts like it never happened. Unfortunately, I am not made that way, I remember every little thing that I have ever been hurt by and it never goes away. I already have let go of the fact she stole my debit card and ripped us off two weeks before christmas. She never paid us back and acts like it never happened. She doesn't even give us money to help raise her child. I have had her daughter for a year now and in that year she has bought: groceries once, bought her daughter some toys, a bike she doesn't even want to ride, and a couple of outfits. Oh and a portable DVD player and a couple of movies. There is more to providing for a child than buying her with a couple of items. There is food, power bills, medical, well most know what goes into raising children. Those that don't have their parents pay for everything and take no responsibility for their own lives at age 36. If the roles were reversed and a family member took in my child when she was with strangers in a foster home at three years old, I would be thankful and not hateful. But that is ok, I am not doing this for her, I am doing it for her daughter. She deserves to have a normal life.She deserves a structured life that has no stress or an abusive sister. She is very loved by everyone and one of the sweetest little girls I have ever loved (besides my Meagan of course!) and as time goes on I cannot think of my life not including her. For the first time in her sweat little life she has friends, new cousins, and she is no longer shy, she is confident. The thought of her be lost in the chaos that she was in makes me sick, she has come so far and made so much progress, since living with us. Its amazing!

We have court again at the end of November, so we will know more about little ones future. I know if and when she goes home, they will limit when she gets to see us. That will break my heart and daughters heart. Meagan loves her so much its adorable. Every night before bed the kiss each other good night and tell each other they love one another its cute. My daughter still has to work on her stinginess but she is an only child, that is normal. She is getting better about it. There are a few special items that only she can play with that she picked out and that has helped. But she is still a little brat when she wants to be!

I miss my dad. Today, I saw a Harley Davidson pocket watch. My dad would have loved it. Little things like this keep throwing me for a loop. I was watching the Kardashian wedding last night and Kim loses it when going through her dads belongings and I lost it again. I just never know when it's going to hit me. I think I am doing so good and then bam, crying like it was yesterday he died. Its been a year on 9/5/11, but for me it feels like yesterday, I have only known since 3/1/11.

Thank you everyone, who has supported me and my family. You have no idea how much you mean to me to receive you amazing comments!!

Friday, September 2, 2011

My baby starts her first day of middle school

Yesterday my daughter started her first day of middle school and I could not have been more proud. I had to go and teach the teachers on how to take care of her and ended up staying for over three hours. It broke my heart to peek in on her in class and see her looking so scared, that's what made me stay so long and help her. I should stay away and let her come into her own but I cant help myself. One cool thing is she has a friend in her class she went to school with for about four years, that was a relief to me. But all in all she did really well. She did not want to go back today but she is always like that. I will go to her school again today and check on her again to make sure she is doing ok and see if they have more questions. I hope the other kids are nice to her she is really sweet.

Wednesday, August 24, 2011

Sorry i haven't posted in a long time, here is the latest!!!!

Yesturday was court day and I had my husband come so he could see how his family is treating me. For some reason lately they have decided I am the devil and I am trying to take away is sister's child. When the reality is that I have a really good thing by taking in her child, when I did not have to. I did it because that is what family is supposed to do. They don't even look at the sacrifices we have made and the money it cost us to raise her. It means nothing to them.

When we walked into the court area, Adam's sister said to him, "What are you doing here?" Not hi how are you or how is my daughter. Also she said it all snotty like he had no right to be there, when his life has been turned upside down just as much as anyone. He has to work seven days a week to provide for another person and she treats him that way. I find it appalling. The funny part is he responded with, "Why are you here?" I laughed in my head. He is so funny!! But best of all he got to see what I have been telling him for months. They are treating me like I am the enemy.

So nothing was accomplished in court but a put off for three months, at least we get three more months with Aireonna and his sister has three months to show her true colors. Now that they have loosened the rains on her, she will, its only a matter of time. Come the next court date it will be over a year we have had custody of Aireonna and twenty-one months since she was removed from her mothers care and that give the state legal right to terminate her parental rights. I wish the best for Airie and only want her safe and happy. No matter where that might put her, she deserves a chance at a life of happiness and not total chaos. She actually thinks its completely normal the life she was living, even though she doesn't have that chaos with us.

After every visitation, she is being programmed not to tell me and Adam anything. She actually tells me that she it told that. How sad. Poor little girl, she just wants to be happy and she is being put in so much stress it breaks my heart. Why would you put your four-year old in that situation? What kind of parent does that to their child. I have started looking for a therapist to help her through this hard time, she is so stressed and wants to please everyone. It really sucks to see her go through this torment every week. After the visits she tells me how horrible her sister treats her and that she only goes there to see her Nana, but she loves her mommy too. She is really being hurt by their behavior and they don't even see it. After she is brought home she won't leave my side, I can't even go to the bathroom without her following me. She is always crawling in my arms and holding me and kissing me. She always tells me how much she loves me and that she never wants to leave here. But there is nothing I can do besides reassure her that she is safe and its going to be ok, when the reality is that its not going to be ok. Its a lose, lose situation. If she goes home, she doesn't have a chance in hell of getting the attention she needs and will get left behind again. If I get custody of her she will be hurt that she can't ever go home to her mommy.

Adam and I have talked about this a lot and we are in it for the long haul we are going to do what ever it takes to make sure she is safe and happy, no m after what. But when this is over, I don't know how things will ever be the same. I am done with the whole situation. If it wasn't for the love we have for that sweet little girl, we would have told them to take her to a foster home so we don't get even more hurt than we already are, but it is too late for that, we love her too much to put her in that situation. We just hope everything works out the way it should and we can have some sort of normalcy in our lives.

As for some good news!! I got invited to join the Pierce Count Board of Developmental Disabilities and am super excited. I will finally going to be able to help others like myself that have a family member that is disabled. I can't wait to get started, this is something I have dreamed about since I got over the initial shock of of having a child with special needs. Wow, this could be life changing for my family. My only fear is that I have no official training, except life experience. I am a fast learner and will learn so much from this, I can't wait!!!

So for those of you that read my blog, wish me luck on my new adventure and with Airie. I just want to do the right thing and keep her safe. I also want to learn about way to help others and be successful at it, it could be the path my future takes me next. I also have my trial at the end of October against the state and my on the job injury that I need to win. Send me all your good thoughts and luck, I need it!!

Friday, July 8, 2011

My angel had her fifth grade graduation!!! She is so proud as was I and her daddy!!

On June 15, 2011 Meagan graduated from the fifth grade and got an award. She is one of two children in special ed that improved enough to leave special and move to an adjustment classroom. I have never felt more proud in my life watching her cruise her wheelchair up to the front of her school in front of everyone, with her amazing smile and pride written all over her face. After the awards the entire fifth grade class sang Carrie Underwoods song, "When Ever You Remember"and I cried watching her do her best to sing the song she loves so much and knows every word of. Its so scary thinking she is going to middle school and starting all over with new teachers and caregivers I know nothing about. But she is so brave, it gives me strength. Since my last post she has gone through another botox injection. I thought I was going to have to go there alone, but was so thankful my sister was able to go with me. Then the next day I had shoulder surgery and got very sick, they said it was a bacterial infection aka mersa virus. I spent the next seven days on IV antibiotics and then had a serious reaction to the meds and have been dealing with that. I try not to complain about life there are so many people in this world that have it way worse than I do, but things have been very tough lately. I still have my niece, which I am so thankful for, she is so special and sweet. I am going to ad her photos they are so cute!

Monday, June 20, 2011

Life is too crazy these days!!

I just finished my first semester in college and I got 104%, 101% and 94%!!!!! Super proud of myself. Tomorrow is court day, I always get scared because it could be my last day with my niece that I have had custody of for almost nine months now. Also on Wednesday Meagan is getting more Botox injections and then on Thursday I am having shoulder surgery. Is my life crazy busy or what? If I lose Aireonna tomorrow, I am going to be devastated, but I have learned a very valuable lesson in taking her into my home and heart. I am even stronger than I thought I was and I now know more than ever before that Adam and I need to have another child. The only thing that is stopping me right now is my injuries. I know I cannot carry a child with a herniated low back disc. So I am going to get all healed up and I am going to have a baby next year or so, no rush! But I also don't want to wait forever, Meagan is 12 and I don't want my kids to be that much further apart in age. I have started making a scrap book of our time with little Aireonna, so that when she does go home and Meagan misses her I can pull out the book and she can look at it and hopefully it will make her not miss her so much. For me, I think I am going to get counselling. I have had so many losses in my short life that I have to find another way to put them away in a health manner. It hard enough having a child with special needs, but I have never really dealt with the pain of it, there is never any time to deal with my feelings. I have too many others that have to come first. I know that is not the healthiest thing in the world but such is life, no matter how bad I feel or sad I feel they need me and they come first. I can have my pity parties when I am alone.
College has been really interesting, I am glad I waited until now to go because if I had went when I was younger I don't think I would have done as good or taken it as seriously. All of my instructors gave me incredible compliments and that felt really good. I have a hard summer quarter coming up. It will definitely be a test of what I can do, but I am super excited about it. I am in a really good place right now. I still have some hard days but things are getting better: I paid off my van and caught up my house so we wont be losing either which is a huge relief. Now we just got to get some of our other debts settled and we will be in the best position we have been in, in about five years. Its progress!

Monday, June 6, 2011

Does anyone know what its like to have custody of a family members child?

I know I have written about my family and all that has been going on with fighting the state. I have temporary custody of my niece and she is truly a precious child, but it is getting harder everyday knowing I will have to give her back. Even though I knew that this would happen, it doesn't change the fact that I will be heart broken. I tried not to let myself get so attached, but that is impossible when you have this sweat little girl in your home everyday, you cuddle every morning and every night. She tells me she loves me so much and she misses me when she is gone. It's really hard, raising a child that is not your own and that has to go back to its own home. Its also very confusing for her. She has been with me over seven months now and she is comfortable here, but also she yearns for her mommy. I have done the best I know how to make her feel at home and secure, but I am not her mommy. She is extremely jealous that her sister gets to be home and she doesn't and that is hard to explain to a four year old, why she can't be home when her sister is. She is so sweat to my daughter and waits on her every whim. Whenever she is at visitation my daughter asks nonstop when her baby is coming back and one of these day I am going to have to tell her that she is not coming back. But at least we are family and will be able to see her, its not like she will disappear out of our lives for good. I have been taking a lot of pictures lately, I thought if I made my daughter her own photo album, she could look at it whenever she misses her baby. Its just really sad. I am so stupid for letting myself get so attached, but this is an impossible situation. My husband and I have been talking about whether we she remove ourselves from this situation, but we can't that would hurt her too much and we can't do that either. What are we going to do?

Tuesday, May 17, 2011

Death, strikes us all at some point, We know this but why won't it stop hurting?

The last two days I find myself, missing my dad, terribly. I have been dreaming about him again and it shocks me every time, because it feels so real. I have been blessed to make amends with some people that were very important to me for over ten years and it has really helped me alot. But, today I awoke to a call from a friend from school. Two weeks ago he lost his daughter in Africa and today he lost his mother. I feel his pain because of my own loss. I know nothing about the loss of a child but the loss of a parent I am living. I feel so deeply for his pain and unrelenting sadness that has affected him lately. I find myself praying constantly and I am not a religious person. I am terrified I will lose my mother, I don't know what I would do if I lost her. When ever I am alone, I find myself crying alot. I want this grieving to stop but it plagues me constantly. I know my dad did alot of bad things, but I still love him and miss him none the less. I wish I could have seen him and said good bye, maybe I would not be feeling this way. I hope he knows that beyond all the drama and fighting, we all loved him. We fought because my mom and dad's raised us to be fighters and stand up for ourselves, but most of all we were raised to love each other and never forget that family is what matters the most. Friends will come and go but family you are tied to forever and that never changes. They will be there for you when no one else is and they are who is important.

I guess the point is that "I forgive you dad." "I forgive you for hurting my mom, for abandoning us whenever you had a new girlfriend, I forgive you for hurting Mary, I forgive you for hurting me and my sibling by not telling us you were sick and not letting us save your life. I forgive you for not playing a role in my daughters life, I forgive you for not saying goodbye to me. I forgive you for not playing much of a role in my life when I was growing up, I forgive you for always calling me three day after my birthday when it was actually your dogs birthday. I forgive you for the letter that destroyed our family. I will always love you and remember you every time I look in the mirror. I will raise my daughter better than the example you showed me. I will keep your memory alive in how I live my life. I will show my family that they mean everything to me and no matter what disagreement we have, I will never let it stop us from being a family. Right now I am broken, but I know it will heal, but I will never forget.  I will carry you in my heart for as long as I live."

Monday, May 9, 2011

I love my husband! He is truely the best!

My husband let me sleep in, which a gift i don't often get. He got up with the girls and made them breakfast, while I slept. I finally got out of bed around ten am knowing that I had to get Aireanna ready for her visitation with her mother. She playfully ran around the house telling me how much she loved me and how excited she was to get to go see her mommy. The night before I took her shopping and let her pick out something to give her mommy for mothers day. Something that would be from her only. She helped me prepare it in the gift bag she picked out herself and she colored the card she picked out herself. Aireanna was so proud of herself, it was really cute. I dressed her in a new outfit I bought for her then did her hair, then got ready myself. We waited for our caregiver to get here because Meagan did not want to go to grandma house. We took Aireanna to her mom's and watched her older sister have a meltdown, which is a constant occurrence in that home. They reluctantly we left, hoping she would be ok. My husband took me to a wonderful dinner at the KEG and to a movie. We even went to the bookstore and got a case for my nook, which was what I wanted for mothers day. When we got home with Aireanna, she had her bath, then Meagan had her bath, then it was bed for the both of them. All in all it was a good day spent alone with my man. We don't get that very often, so it was really nice to be together. I love my husband!!!!

Tuesday, April 26, 2011

I hate DSHS!!!!

I have a foster child that is my niece. I received a letter saying they are terminating her medical and income, its dated 4/18/11 and it terminated 4/30/11. How is this possible, she is still in foster care and a ward of the state. I called her CPS case manager two weeks ago when I got the letter  about her medical going to be cancelled and of course i have not gotten a call back. So typical of CPS, they are quick to respond for BS complaints, but when its something that is important got forbid they be responsible and call. So I call the supervisor leave her a message, a week goes by and still no call. God Help me before I lose my mind. They never answer the phone. So I decide to call again finally the supervisor answers but she doesn't know what is going on. I decided to call DSHS myself, was on hold for 45-minutes and thirty seconds after she answers the problem is taken care of. OMG!!! I wish CPS would have said this from the beginning so I would not be freaking out about her medical Another disaster averted. I feel like I am walking through a mine field, it so frustrating!

Last night I dreamt about my dad again. It was so real, I had to force myself to remember he is dead! It really sucks. I wish I could see him one more time. I have been looking for my wedding video, but I can't find it  anywhere. I just want to see him alive and happy. But I think if I keep thinking this way I am just going to take ten more steps backwards. I already dream about him most nights. They are never happy dream either. They are always like the pictures his wife left me and the voice mails she kept that she let me listen to. I did not know I would not feel so empty. I keep telling myself that the sadness will go away and I will find peace again, but its not coming and I don't know how to make it better.

I am still dealing with the in-law term oil, I don't know how much more I can take of this term oil. I love Aireanna so much that maybe I should rip the bandaid off now and have another family take her. Then I don't have to feel the loss as much when she leaves. I grown so attached to her. I know that is normal and all. But she calls me MOM, I don't enforce it, but I think its the only way she feel part of a family. She even call Meagan sister and Adam dad. Its almost like her were her surrogate family. The problem I have is that I can't hurt her that way, plus if the state decides to terminate her mom parental rights I want to be able to keep her in our family and not have her adopted by strangers. I am at the point that I can't imagine our home without her, that makes me feel bad, I know I am not her mother. I am not trying to replace her mother. I am just trying to be supportive to her and provide her with a consistent, safe, structured home environment.  What am I going to do, I have no support from my in-laws, they say they love me but their actions speak volumes of who they really care about. Their son and I are alone in this world and I know that now more then I have ever before. It breaks my heart in so many ways, I love them like they are my real family but I am not their blood.

Lately we have been talking about moving away, possible out of state to start  over, once all this custody crap is over. We feel like there is no longer anything keeping us here.  The problem with that is I love my family way too much to live too far from them. I live through my nieces and nephews because I don't get to do the same things with my daughter and I can't imagine not having a relationship with them. That would kill me. Plus all of Meagan's doctor's are here and I need that consistency, but I could move closer to my mom and rent out my house. I don't know what I want anymore!

Thursday, April 21, 2011

When will sadness end and the happiness begins?

For Seven months I have been fostering my niece Aireanna to help out my in-laws and because I love her like she is my own child. She is so special, sweat, and a perfect addition to my family. It was hard to begin with. Life changing. You go from having a normal life to having an extra body to feed, clothe, love, and take care of properly. I love this little girl like she is from my body. I know logically that she is not mine and that she will be going home some day. But for now I am taking it all in and enjoying her while I still can. The problem is the future. What am I going to do when I have to give her back? I though I would only have her a few weeks maybe a couple of months, but not this long. I have allowed myself to get too attached to her and its going to break my heart when she gets to go home to her mother. I will be happy for her mom and sad for my loss. Its a mixed bag of nuts.

Lately she has been calling me mommy, I keep telling her that I am not her mommy, I'm her auntie, but she always responds the same, "No, your my mommy here and she is my mommy there." She is so cute, and smart. She wants to be accepted the same here as my daughter Meagan, she longs to be as important to me as Meagan is. I keep reassuring her that its ok, for her to love me and her mommy and that her living here doesn't mean her mommy loves her any less. But she is only three almost four, a still doesn't understand the logistics. Lately things have been really hard. Her mom and I had a fight over me trimming her hair. Aireanna came home from daycare with tree sap or glue in her hair. I could not get it out of her hair. I even took her up to the barber shop up the street where my friend Lenny works. He said he could not get it out and had to cut it out. Aireanna has been a baldy most of her life. But since she has been in my care I have been taking good care of her hair and its grown alot. I tried to call her mom more then ten times and gave up before I cut her hair. The following Sunday she had visitation with her mom and she called me freaking out about me cutting Aire's hair off. I tried to explain to her that she was not available for me to ask, as it is most of the time lately and she flipped out calling me a fucking bitch and then hung up on me, instead of letting me tell he what happened.

The following tuesday we had class together at first she was giving me dirty looks and ignoring my existence. I had to tell her about my daughter being injured and that I might need to bring over her daughter and then she seemed to warm up and stop acting that way. I thought things were going to work themselves out like they have in the past. By the past I mean, a few years ago she stole my credit cards, debit card and even our quarter collections. Plus who knows what else. It took me two or three years to sort of get over with, or put it sort of past me. But the reality is she has not changed much from then. She stole around $1500.00 from us just ten days before christmas. My bank account was massively overdrawn and my family did not get much of a christmas. It was a really dark time in my life, she was my best friend. I shared everything with her . She knows things about me that I had never shared with anyone. It broke my heart that she could care so little about me and her brother to hurt us that way. But with that being said, I forgave her, I will never forget it but I have forgiven her. Even though her family just acts like it never happened. Let just sweep it under the rug and act like no one got hurt. I never could understand why things are this way.

My husband is held at a completely different standard then his sister. Its not fair. Her parents bought her a brand new car(which she destroyed), they pay all her bills for her and she lives with them. We bought a home by the time I was 23, bought our own cars, have never borrowed money from them ever, yet now we are in financial hell, we need help but there is none to give us, we are on our own. I sit here writing this while my little Aireannaok? Will Aireanna always know how much I love her? Will her mom ever appreciate the sacrifices we have made to help her? Will she be safe when she goes home? Will her sister hurt her again? Will she be emotionally ok? So many questions I can't answer.

Sunday, April 10, 2011

State budget crisis affects everyone, Vote people vote!

As most of you know I am the mother of a child that is disabled. She is 12  and her name is Meagan. When Meagan was three she got her first manual wheel chair which has been a much used necessity. We still have that same chair and Meagan has grown out of it. So for the last year we have been trying to get the state to approve a new chair, with no luck yet. Meagan's chair has gotten so dangerous she can tip over in it and she screams if she is not completely harnessed in her chair.  We desperately need this chair because we do not have a van that has a wheelchair lift in it to transfer her power chair, so we use her manual chair for everyday life. I can't believe they are giving us so much trouble when it is the only chair they have purchased in almost ten years. Crazy!!!

To ad insult to injury in 2005 I bought a brand new mini van, a Toyota Sienna. I was so excited because it was going to make our lives so much easier and it really has. The sales person assured me that our van could be modified when we needed it and that Toyota even gives a $1000 towards this modification, however he did not bother to tell me that we have to order the van pre-modified from Toyota to support a lift. So now with our daughter getting much bigger and our bodies failing for various reasons, we need a new chair and soon a wheelchair ramp van, but are so poor that is not possible. We are barely surviving on the income we make now and our credit has been destroyed with the loss of our business and rental house. I feel like we are never going to get ahead of the chaos that has taken over our lives these last few years. I find myself feeling lost again and scared.

I decided to go to college so I can have a future with a career that makes me happy. I don't care if I make a ton of money, I just want to work and be happy. It might take several years of schooling but after spending 16 years at my last career and leaving the way I did. I find myself needing to have meaning to my life. There are so many unanswered questions lately, that have fogged up my brain. With my dad dieing I have scars so deep emotionally that I don't know when they will ever heal. I live with the constant fear of something happening to my daughter. I am in pain constantly from my injuries and terrified for the surgeries that are coming my way. I feel such a loss in my life that I don't know how to fill the void.

I have over extended myself trying to help my husband's sister and raising her daughter. Keep in mind this is in addition to taking care of my daughter who requires 100% care, as well as going to school full time, advocating for my sister-in-laws kids, trying to help her lawyer keep her out of jail, and keep my husband happy. Friday I had to trim Aireanna's hair (my foster niece) because she came home from daycare with something in it that would not wash out. I trimmed maybe a quarter inch. Her mom calls me today flipping out on me for not consulting her about cutting Aireanna's hair. I was shock by her hostility. I have cut her hair two other times and she has never said anything to me before, in addition I have custody of her, I don't need to tell her anything I choose to do with her child, she lost that right when she was placed in my home. In addition too, she would not have near the relationship she has with her, if it wasn't for me agreeing to take her into my home. I was trying to explain to her that I don't always call her about these things because she doesn't answer her phone when she called me a f-ing Bitch and hung up on me. This is the person I have stuck up for constantly and helped constantly so she could get one of her two children back. I have gone to every court hearing to support her and turned my life upside down for the last seven months just to help her and her children. I am done, no more will I continue to do these things for people that don't even appreciate them. I am so tired of people using me and taking me for granted, I have no more to give. Its time for some people to grow up and take care themselves instead of having everyone do everything for them. It blows my mind when I think about everything I have done for people and then try to think about what have they done for me. Mostly nothing, a few loads of dishes and laundry after I had surgery. WOW!! That's the thanks I get. No more, I am done. I will no longer help people that are completely capable of helping themselves, yet choose not to and are to selfish to appreciate what everybody does for them. Plus I will not be talked to that way by anyone period. God I love my life can it please get better!!!

Monday, March 21, 2011

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.

Saturday, March 12, 2011

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.

Wednesday, March 2, 2011

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.

Saturday, February 26, 2011

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!!!

Thursday, February 24, 2011

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!!!!!!

Monday, February 14, 2011

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?

Monday, February 7, 2011

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.

Friday, February 4, 2011

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.

Tuesday, February 1, 2011

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.

Monday, January 31, 2011

Some pictures of my angel and the reason I'm still alive!

This is Meagan on our camping trip with our other daughter Nala our dog. She thinks she is human and even has to sleep in bed with us or Meagan.

My little BatGirl she has worn this same costume four years in a row. I lost the real mask so I had to creat on. She is so cute!!!

Everyday is tough but I get through it and so can you!

I want to start out with a background about myself and my family. Family is all I live for they mean everything to me. I feel very lucky to have the people I have in my life. First is my husband Adam. He is my rock and best friend. Adam deals with his sadness and disappointments with his usual strong quiet self but deep down inside I know he hurts just as much as I do. He is the most wonderful father I have ever witnessed. I watch him interact with our daughter and its amazing. It's like they have their own language. They don't have to speak a work to each other yet they completely understand each other in a way I can't even understand. I would be nothing without him and I don't tell him that enough. After fifteen years of being a career woman I am now a stay at home mother starting all over. For eleven years I worked for American Management Services, one of the nations largest Property Management Companies until I was injured on the the job and was forced to take a leave of absence to get well from my injuries. The state of WA decided I was cured and cut me off from LNI releasing me back to work. I contacted my employer to let them know I was ready to work but after about a month of them not giving me any work and having no money, I finally had to apply for unemployment. A week later I found out that I had been terminated. My boss of eleven years did not even have the decency to contact me and let me know he did not have a position for me. I was devastated. I put my life into everything I did for that company and after eleven years I did  not even get a phone call letting me know I had no job. So for the first time in my life I feel totally lost. With everything I already go through with raising a severely disabled child now I am unemployed and could lose my home. I turned to my family for support but my sister-in-law's two children were taken away by CPS, using their abuse of power. So now I also have temporary custody of my niece, to add to my stress. My niece's name is Aireonna and she is a delightful three and a half year old that has been seriously traumatised by being taken away from her mother. Aireonna can't return home until we can get her older sister the help she needs, she is also disabled and might be mentally ill. Aireonna's sisters name is Jocelyn and I am advocating for her so that hopefully we can get her the help she needs and she might be able to have some sort of a normal future, but she is dangerous and attempts to hurt her sister, so I am forced to limit their interactions. Now I'm not only a mother of a disabled child, but I am a foster mom to my niece, an advocate for Jocelyn to protect her future and my family. As for the real reason I am creating my blog: Meagan Ashley Pritchard born 12/1/1998, she is 12 years old. Meagan is the reason I get up everyday, take every breath and fight to give her a life she deserves. Meagan was delivered via c-section and was very healthy and perfect in every way, but she failed to meet developmental milestones. Meagan never sat up, crawled, walked and her speech is severally delayed. She is also cognitively delayed. We don't know what is in store for Meagan but what we do know is that she is special. Every time she enters a room everyone is drawn to her, like a light from up above. Even though Meagan is in a wheelchair her spirit shines brighter than any child  I have ever met and she makes my life worth living! I write this blog with the hopes that others like us will read this and know they are not alone and if I can get through everything I have been through then so can you. Post your story on my blog and share it with the world. Hopefully together we can help new mother's whom are just finding out their is something wrong with their child, know that they do not have to feel alone, because that is the first feeling you feel after the shock and disappointment fades away. You are not alone!