2011

Looking back on 2011 and how it started out and how it is finishing I have to say that the end is better then the beginning but it still has been a very rough road and Iam hoping that 2012 is so much better for my family than 2011 was.

It started out going to the iwk with a child in alot of pain that was treated with steroids ( prednisone) and now deciding to add to the mix weekly injections of methotrexate, the first few times we were instructed at our local hospital on how to give the needle. Then came the time to go it at home, the first few times though very scary went well, it was just Sophie and I here and her being a brave girl and mom( me) being not so brave but not showing it and sucking it up and doing it .... all for the sake of my girl and hoping that this med would help her arthritis.
We spent 7 months doing the injections at home, after her realizing what was in store she decided not to be as brave as she first had been , it took bribes, and rewards and holding her down ( with help of my parents) to get it done , in the end I had a 6 yr old child who was showing signs of depression and anxiety and still not getting as much relief as we had hoped. I had to put her in therapy and we decided in October to try another drug. This was a pill( Arava) she had not learned to swallow a pill and she was willing to do so if it meant no more injections( at least for now) . She did great learning to take the pill( thank goodness it was small) . But we are still having some flare ups, pain and swelling , she is fatigued certainly not as bad as she had been at the end of last yr but I am still hoping that come Feb we are able to try something else or do something else that may give her better relief. It is so hard being a mom to a child with a chronic illness. Watching them suffer in pain and not having much to offer in way of help sucks . My parents bought her a heating blanket  which has come in handy.I know she could be much worse, but this year has been enough of a struggle. Blood work , trips to the iwk(our closest childrens hospital ) , she even had to be admitted for 3 days back in July for a flare up that resulted in iv steroid treatment. We have been dealing with Arthritis for close to 3 years now, we have our ups and downs , good days and not so good days. Iam so greatful to all the moms I talk to on a facebook group, they have given me and Sophie so much support and prayers through it all. I do not know where I would be without them.

 My wish for all kids suffering with any kind of illness is that 2012 be better for all these kids, for them to be able to have as much of a normal childhood as possible, it is hard when our kids take daily meds, needles, endless appointments, get sick easier, miss school , can't keep up or participate in activities like their peers do. my new yrs resolution is to do all I can to give awareness to an invisible illness that too many of our kids suffer with . To make others aware just because a child may not look " sick" does not mean they aren't. Inside they are suffering and wanting to be "normal" and pain free and not to have to take meds, and miss school and go see a doc all the time and to have needles and wonder about their future and if their hopes and dreams are realistic for them, will I be well enough to go to college, will I be well enough to get married and have my own children , will I be well enough to hold a job , will I be well enough ..... these are things our kids have to deal with and I hate it , I feel very helpless when it comes to Arthritis and helping my child learn her limits and find new goals and hopes and dreams . We have all dealt with more then our fair share this year, life is not always easy I know , but if we can just have a few less days of pain and a few less days in hospital and a few more days watching our kids be kids and laughing and doing what kids should be doing then this year that is almost upon us will be better then the one we just had ... I wish you all the very best ( and let god's love for all of us help you through when we do have those bad days) . I am so grateful to have a beautiful , brave , strong daughter who has taught me more in her 6 yrs on this earth then I have learned my whole life. I love you Sophie !!!! you are my superstar!!

Planning when you have a chronically ill child

Awhile back my sister asked us if next yr we wanted to go on a trip with them, I immediately said yes, not thinking ahead. then it came up a few questions about the trip and it made me think that I don't have the answers , i dunno how my child's illness will be when the time actually comes to go on a trip a yr in . What happens if we cannot go ? what happens if we plan it all out and in the end we cannot due to health issues go and everyone is relying on us to pay our part of the trip and it is now onthem to make up teh money for us not going and contributing to this trip? How do other families of chronically ill children/people plan a trip with friends and family and feel ok about it if the time came and you coudl not go ? I tried to explain this and in the end was not understood by my family. I am confused and not sure anymore if in our life we can honestly say we can do something , to be open and honest about it I woudl feel horrible if we said we coudl go and then couldn't and left our family having to make up for our part of the trip. How do I explain how I feel to the ones who invited us and am I wrong in deciding that we cannot plan things like this in the event we cannot go ?

my life as a single mom: Being a single mom

my life as a single mom: Being a single mom: "4 yrs ago I decided that my marriage of 2 yrs was not working and it was best to walk away and move on with my life. Just after that , I fou..."

my life as a single mom: Letting go

my life as a single mom: Letting go: "My daughter joined Sparks awhile back and the other night they had palnned a sleepover. She has slept over at my parents house before and at..."

my life as a single mom: Dealing with a child who refuses to go with the pa...

my life as a single mom: Dealing with a child who refuses to go with the pa...: "From the time my daughter was little she never developed a strong bond with her father. I went back to work , working evenings after a year ..."

my life as a single mom: First day of giving my daughter her needle.....

my life as a single mom: First day of giving my daughter her needle.....: "Today we were going to go to the hospital for the last time to give Sophie her Methotrexate Injection, with the help of the nurse. But becau..."

my life as a single mom: working our way back to Saturdays for Sophies meth...

my life as a single mom: working our way back to Saturdays for Sophies meth...: "working our way back to Saturdays for Sophies methotrexate, needle day is tomorrow, I have given her her needle 3 times now but it is still ..."

my life as a single mom: changing your name after separation or divorce

my life as a single mom: changing your name after separation or divorce: "A few yrs after I had been separated from my daughters dad , I knew there was no chance of us ever getting back together so I decided to tak..."

my life as a single mom: I am not perfect but am I really that bad?

my life as a single mom: I am not perfect but am I really that bad?: "I will be the first to admit that i am not a perfect mom, daughter, sister, friend. But today I was told something that really hurt and both..."

my life as a single mom: tired of being the bad guy and seeing Sophie suffe...

my life as a single mom: tired of being the bad guy and seeing Sophie suffe...: "Last night was one of the more harder times we have had with Sophie and her injection, she hates them , I hate giving them to her and in teh..."

tired of being the bad guy and seeing Sophie suffer.

Last night was one of the more harder times we have had with Sophie and her injection, she hates them , I hate giving them to her and in teh end after the crying and screaming and sayin " I want to live on teh  streets and find a new family" all is calm again but my heart is not. It has been 6 months since we started on the road of methorexate injcetions we have had out ups and downs, good days and not so good days. We have had some ok needle days and then there came a pint where it took me plus my parents to hold her down and make her take the needle screaming and crying. As a mom , you want to not hurt your children, I do not spank her or hit her , sometimes I raise my voice but I do not hurt her physically, I know it is my job as a mom to protect her and guide her through this amazing but crazy life. I feel like an udder failure at protecting her from pain. One I cannot control her arthritis and even though praying for god to give me her pain I know this is gods work and who am I to question it, but i do , why does she have to suffer, why does she have to endure nedles and daily medicine and blood work and appointments and feeling different from her frineds. I know in the end this experience wil make her a stronger person and she is already strong and brave , but deals with more then any child should have to. She wants to learn to swallow a pill and g back to oral mtx and I will call the dr and take to her about it. I really hope but not going to get her hopes up that she wil aloow her to go back the pill. I pray everyday for her and all children suffering , I try to be brave and strong for my daughter and I guess that is all I can do .....

I am not perfect but am I really that bad?

I will be the first to admit that i am not a perfect mom, daughter, sister, friend. But today I was told something that really hurt and bothered me a lot. I have made my share of mistakes in my 32 years on this earth. I don't know anyone that hasn't. And I have learned not to look back and regret them because they have brought me to where I am today and made  me who I am.

I have spent the first 25 yrs of my life trying to live up to what I believed other people wanted for me. As a child/teen/ young adult I tried to think before I did anything in my life about what others would think or  how they would react . I was never a bad teenager who disrespected her parents. I finished school and went to college and worked.

When I decided to get married to a person I knew no one in my family liked was the first time I knew I was really disapointing my family. annd getting pregnant and having a child was the second. After I left my husband knowing it just was not working out, I tried again to do what was right in the eyes of family.

I am completely tired of living my life for other people, doing what is " right". and not having the life I want for myself. I was told today by someone that I love very much something that really hurt and bothers me. We are all given a life to live and are bound to make mistakes , but they are  my mistakes to make. I have never told this person what to do in their life and have accepted them for who they are , mistakes included. 

When do I get to do what I want? When do I stop caring what others think of me? I feel my life slipping away and not allowing myself to do what I want. I know life does not always go the way you want , but sometimes , sometimes, I would like to have or do what I want without others telling me how wrong I am for doing it.

My daughter is an only child except for a half brother ( who she rarely sees). I know she is a very demanding child and gets her own way more often then she should, and a lot of people  probably believe she is spoiled. I have often wished for the chance to give my daughter a sibling. But was told by a loved one they would pay me to not have anymore children.

It made me feel like I am terrible mother. that all I have done was make mistakes with my child. Have I really messed up my child so bad that having another child would be that horrible? I guess I can chalk up my experience of being a mom as another failure in my life. Add it to the long list already written down in the book of " what Melanie has done wrong in her life" .

changing your name after separation or divorce

A few yrs after I had been separated from my daughters dad , I knew there was no chance of us ever getting back together so I decided to take back my maiden name. It was a very hard decision that took alot of thought, weighed the pros and cons. I knew this would bother my daughter who does not have a strong bond with her father and very sadly will likely never have a great relationship but one can only hope things will change. I decided to go ahead and change my name. And after doing this I felt so good about my decision. However lately my daughter has started to ask if she can change her name as well. She just turned 6 and has alot of opinions on alot of stuff !! lol She acts more like a teenager most of the time then a 6 yr old . She really hates that our last name is not the same, she says she is closer to my family then she ever will be to her dads and feels like she should have the last name of her mom , who she lives with and spends 90% of her time with. I keep telling her that someday when she is old enough she can change her name or when she gets married she can take her husbands name, well this is not good enough ..she said that seems so far away and she NEEDS is done now. I do now feel very guilty about changing my name knowing full well she woudl eventually feel this way. I know there are alot of parents/children with different last names and it is not the end of the world, but knowing her dad does nothing for her but bare minimum and even that is a stretch .... it is no wonder she wants a name she can be proud of and a feeling of belonging.

working our way back to Saturdays for Sophies methotrexate, needle day is tomorrow, I have given her her needle 3 times now but it is still hard ...the things we do for our children , learning to give needles is not something I expected to have to do , nor did I expect to have to raise a child with Autism and Juvenile Arthritis alone, but I am and I am so thankful I can be strong and brave when needed ... unlike her father who cannot be bothered to call his own daughter on her birthday..... I have to say that if i stop and think about what my life would be like now if I had stayed in my unhappy marriage and was trying to raise our daughter together threw all of these difficulties I would have killed myself by now. I know that he woud have drove me crazy , the one time she was in the hospital when we were together he was of no support to her or I , he was upset and acting like a baby ... I know I am a strong person and have been able to handle what has come our way as best as I could, sure I have had my moments , when home alone after an appointment that I let my feelings out and cried and screamed why ... but I have always tried to do my best to be positive for my daughter and I know had we stayed together he would have made things much harder.


I will be 32 in a few weeks and have done alot of soul searching the last few yrs since leaving my marriage and have come to the conclusion that I am meant to be single. I am not good at letting people in and sharing the heavy load that sometimes life can bring my way. I am happy being single. Yes,I will admit sometimes it would be nice to have a handy man around or another set of hands when carrying in the groceries. It is sometimes lonely here after my daughter goes to bed at night or when she is away with her dad.

But I have to say until the right guy comes along that fits ..... that I can let in and share the load with and learn to let go of the control ( which is what my ex said most of my problem was) I am happy , happy being single. Happy giving my love and attention to my daughter, my fur babies Salem and Princess, and my immediate family and close friends. And I have always heard when you are not looking love will find you ... maybe just maybe there is someone out there right for me , and me for them.

I am blessed with so much and Iam greatful for all I have in my life.

First day of giving my daughter her needle.....

Today we were going to go to the hospital for the last time to give Sophie her Methotrexate Injection, with the help of the nurse. But because of the stormy weather I decided I was ready to attempt it here at home with no help, not even my mom here for a distraction for Sophie. I called the nurse and she said go for it , that I could  always come back next week if things did not go well. When she came home I had everything out . She had had a bad day at school so she was cranky, I thought oh no this does not set the stage for a good attempt at this, she can be very hard headed and stubborn ( doesn't come by that honestly lol ) !! She finally got out of her  mood and let me put the numbing cream on her arm, it takes a good hour to work , it helps numb the skin so they do not feel the needle, who ever invented this, I love you sooooo much !!! lol  We did some crafts and then she played on the computer.... I said ok lets find a video for you to watch while I give your needle, it had to be a barbie princess clip on youtube , hoping she would be busy watching and not even notice. I got everything in place and followed the instructions I was given and gave it to her whooohooo, afterwards I took a deep breath and was ok , it was ok. It still sucks to have to give your child a needle , she hates it , I hate it but we both did it and it was ok , we were ok !!!!

Dealing with a child who refuses to go with the parent who has visitation

From the time my daughter was little she never developed a strong bond with her father. I went back to work , working evenings after a year at home with her. It was very hard to leave her because of all the problems between myself and her  father, we did not see eye to eye on parenting and I was concerned about his lack of knowing what to do with her. He did have another child but also had a hard time with him as well. I woud get calls from him while I was at work asking what to do , I would hear her in the back ground crying, this woudl go on 3 or 4 times an evening. Not being able to just leave work and being a first time mom this was very hard on me , and very stressful. He was never very gentle with her , without sayin too much there was times I witnessed this rough behaviour which made it easier to decide to leave and make a life for my daughter and I . From the time I moved out ( our daughter was just 2 yrs old). He had nothing to do with her until we finally got a court date 7 months later. I would not let her go alone with him , knowing if we did not have a court order , if he decided not to bring her back , the police would/could do nothing about it. I did tell him he could come visit her but he refused to do this, At this time she was starting her therapy for her Autism. Once we went to court it was decided his visits would be supervised. When he started coming around again , she would take him by the hand and walk him back to his car, or cry and refuse to go to the door with me. I got her worker at the Autism Centre to come and try and help them out. Teaching him about Autism and how to interact with her , this only helped while the worker was there. The supervised visits lasted 2 yrs , until we went back to court. It was then changed to him being supervised for 6 visits with a parent aid/case worker. plus his parents had to be there for a certain time, once the worker was no longer there, my daughter would say she wished she was still there during visits. She started to refuse to go , she would reluctanly go , and then refused all together. It was like the time apart between visits would be enough for her to try again and go but would come back sayin she did not want to go next time, she slept over twice at his place. and says she does not  want to go back. He does not call through the week to see how shes been or to just talk to her. Out of no where tonight she said and almost in tears , I do not want to go again , I do not want to see him again!! I try my best to talk to her and say but hes your dad and he loves you but nothing I say seems to make her change her mind about how she feels. She told me last week se wished he was not her dad, she wished she had a better dad!!! I think she needs to talk to someone about her issues with him, I have tried talking to him and explaining what little she has told me but he doesn't seem to get it ..which doesn't surprise  me at all . He has never taken my advice when it comes to her .   I know that I should be better at making it seem ok to go ..but when I know what he is like with her , and how unhappy she seems , it is hard for me to force the issue.

It is sad when a child does not share a bond with one of their parents. She has told me that she feels bad for him , that is why she ends up going even when she does not want to go , she says he tells her how much he misses her and how lonely he is without her . Who is the grown up in this relationship, not him. She has to remind him to put on his seat belt, she reminds hime to slow down when he is driving fast. I really do worry about her , she has been through enough in her childhood so far to have to be a parent to him when it should be the other way around.

Letting go

My daughter joined Sparks awhile back and the other night they had palnned a sleepover. She has slept over at my parents house before and at my sisters place , and a few times at her dads. But this time was different. It was hard to let go of all my fears of something happening and me not being there to help her. What if she woke up in pain and needed her heating pad or tylenol, what if she could not sleep .... It took me awhile to leave her , after dropping her off that night .... I stayed til I made sure her leaders knew I was just a phone call away , that I would come back to get her anytime. I made sure they knew to make her take a break if they were running around , not wanting her to have too much pain in the night. I came home to stay close to the phone incase they called, not sleeping much wondering how she is making out. When your child has something wrong with them it is that much harder to let go I think , the fear of something happening and th e people around her not knowing how to help. I was told once that I was an over protective mother and to just let go .... I am trying very hard to do that ...what is a good balance of protecting and letting go ? There is no parent manual that comes along with our children when they are born, you have advice from others , parenets, inlaws , care givers , friends and complete strangers .... how do you let go of the one thing that means the world to you ?  I am working on it knowing that she is getting older and wants some growing room but I have to admit  I am horrible at it . I really do hope that  I am not going to be one of those parents that  try and protect their children from everything and not let them learn from their own mistakes. Because I know from experience I have learned more from ym own mistakes then I have from others. what is that saying ..if you love someone let them go .... easier said then done but  I am working on it ...maybe when she is 40 I will get there ...lol or maybe not !!!!

Being a single mom

4 yrs ago I decided that my marriage of 2 yrs was not working and it was best to walk away and move on with my life. Just after that , I found out our daughter who was 20 months old  had Autism. It was one of the worst days of my life. I went through all the parts of greiving, denial , sadness, ect.. and then I knew I had to get out of my depression over my marriage not working and my daughters diagnoses and do what I had to to help my daughter be the best she can be. She was lucky and started therapy right away and had the most awesome team of workers I could have asked for . It was a long hard struggle but she has come sooooo  far and today you would not know she had be diagnosed with Autism. I am so thankful and greatful to god and all my family and the Autism Centre that worked with her everyday for 3 yrs. She is now almost 6 and in kindergarten.

Almost 2 yrs ago now she fell  outside and hurt her knee, she had always been clumsy but we always thought it was part of her Autism. They put her in a cast and checked her again almost two weeks later, still swelling and pain , they sent her to a specialist and he did an MRI. He suspected Juvenile Arthritis , we were sent to the IWK to a pediatric rhumatologist , who confirmed she had Juvenile Arthritis. She was put on an anti inflamitory and joint injections were scheduled. They however did not help her at all. She had gone from 2 joints to 20 joints affected in a year. We have made several trips to the IWK and from our home it is 4 -4 1/2 hr drive. As of right now we have started a weekly methotrexate injection , she had been on the oral methotrexate but it was not helping either.

We also found out she has an immune deficiency, her body has no A antibodies in her blood, so it is hard to fight of infection or virus's. She gets sick a lot and when she does it takes her a bit longer to get over it.

She has not had a normal childhood, she has spent her days in therapy and now spends her days in pain, taking meds, needles and blood work , doctors appointments all while trying to be a normal child like her friends. It is a struggle as a mom to have a child who all they want is to be normal and fought to be normal and overcome Autism as much as any child can over come Autism.I wanted to give her something that was special, that we could enjoy as a family, that would make her childhood better so  I decided to apply for a wish to be granted ...or to see if she qualified for one ..there is a foundation that grants 80% of their wishes to chronically ill children, and her doctor told me to apply. We have started the process, filled out the forms and she has thought about her wish . She wants to go on a Disney Cruise. I really think this would help her feel like a normal child , to go and have fun and be a kid. Not to have to think about doctors and appointments. She loves princesses like most 5 yr old girls do and I know she would love this vacation. Being a single mom I know I could never afford to take her , so this would be an oppurtunity of a lifetime  for us.

I am in the process of learning how to give my daughter her once a week needle. It was scary but I feel like being able to give it at home will be better for her then having to go to the hospital to have it done. I have done it once so far and it was not as bad as I figured it to be, sometimes you just do what ya gotta do. ( suck it up as I say ) !!

We are going back to the IWK in April for a checkup, to see if this injection is helping , if not there is one more set of drugs they can give. They are called biologic agents, they are a very strong drug with alot of side effects. So I am hoping and praying to god everyday that she will start to see improvement with this drug.

Being a mom is a tough job, going it alone and having a sick child is sooo very tough but I love my job being a mom to the most wonderful , loving, caring , giving, angel. She makes me laugh and cry and smile everyday . and I would not trade being her mom for the world , even on the not so good days , when she is in pain and cannot finish her homework, when she cannot sleep due to joint pain, when she is acting up cause she knows soon there is a trip to the hospital coming up.  She is the light of my life and even though her father and I are no longer together and I had wished I had never met him , I cannot regret  it cause I have the best gift I could have ever wished for.