Who Am I??

Who am I?

In having a child like Jordan I think sometimes we forget to take time for ourselves, we get lost and forget who we are. I have had a difficult time turning 40 this last week and recently have taken some time to reflect on myself. Who I am, what I have done and what I have overcome.

I am: Part 1

A sexual assault survivor

A domestic assault survivor

A teen Mother

An Ex-Wife

A Mother of a gay son that has been bullied most of his life

A Mother of a special needs son that has spent years in and out of the hospital

A Mother of a daughter that has been through tragedy

I am: Part 2

A survivor, a mother, a wife, a daughter, a sister, a niece, a grand-daughter, a best friend, a caregiver,  an advocate, a chef and caterer, a college graduate.

I am a fierce survivor against all odds. I will always come out the other end stronger.

I am a teenage mother who raised a strong daughter to put herself first, to be anything she wants to be, to believe she is beautiful and only deserves the best.

I am a mother who raised a son to believe he can be true to himself, he always has someone in his corner and no matter what I am always here for him even if he strays from my arms.

I am a mother who has held my son through medical procedures unimaginable to most, I have placed him in a surgeons arms many times and prayed that they would be placing him back in my arms. A mother who has spent years teaching him something as simple as blowing a kiss or holding a sippie cup.

I am a mother that finished my high school education and college education while being a mother.

I am a mother to a young firecracker who is a true gentleman, a selfless boy who is full of humility and humor. These 4 babies are my biggest accomplishments. They are my heroes and my reason to breathe.

I am a women who always puts everyone else first, a woman who has seen incredible struggles, and a woman whose strength even shocks me some days. I am a best friend and cherish my friendships. I am a beautiful 40 year old woman who has lived the life of an 80 yr old woman. I have had nothing and I have had everything and I can tell you I would rather have nothing and be happy and true to myself than to have everything and be truly lost.

I am a woman that has spent her life thanking everyone for helping me, a woman that has always focused on who has made me a better woman, who has helped me through tough times, who has picked me up and dusted me off. I am a woman who would rather not talk about herself but have the focus on others but, I am a woman that is learning to make myself a priority. I am also a woman that is learning I am the rock and the glue that holds everything together. I need to thank myself some days. I need to celebrate who I am, what I have overcome and what I am yet to do.

I think back on the last 40 years and I know there is nothing I can’t get through, I know there is nothing I can’t accomplish if I truly want it. I know I am strong, intelligent, outspoken after all I am an Aries/Taurus Cusp. We are the cusp of power and after 40 years I am finally starting to realize my power.

No matter what life hands you know you can get through it, alone or with a team. Life will make you bitter or better. Let’s choose better. I have decided I am going to be the best 40yr old version of me I can be (even if that means still telling everyone I am 30, still not ready to be 40 but a little more comfortable with it)

Celebrate yourself, your accomplishments, your struggles and your triumphs no matter how small. 

WE DID IT!!!!

Time for a feel good update:

Well we did it…..Jordan and I completed our very first race together. The Forest City Road Race 10km.

We didn’t finish in the best time I had hoped for but considering I was sick with nasty allergies and nursing an injury to my groin we did well. We finished with a time just under 80 minutes and that includes stopping for a pee break and to check Jordan’s hat several times.  Approx 526^th out of 677 runners. Not bad for our first attempt.

Pre race I felt great, like I had this in the bag. Mid race photos clearly show my face as “someone kill me now” and Jordan laughed and clapped his hands the entire 10km, post race I was so glad we completed and really wanted a steak (still haven’t had that steak 2 days later). Jordan won an award for being one of the fastest times in his age bracket….glad to know I run as fast pushing a jogger as a 15yr old boy does solo haha!!

I have many emotions regarding this race. As most of you know I made a promise when Jordan was a baby that if he ever walked I would run a race with him. He started walking in a walker at physio, and really taking steps not just standing there waiting for someone to push him but really walking. Due to his illness and my lack of nerves we were unable to compete until this year but, I decided it was time to hold up my end of the deal. So run we did.

I never realized how much different it is pushing a 15yr old child in a huge jogger compared to running solo. I ache in spots I didn’t know I had. My biceps and triceps are burning still, my hips feel like I am 90yrs old and yet I am so thankful for the experience and I am planning on training with Jordan to do the half marathon next year.

Everything we have gone through with Jordan in 15 years has made me a stronger woman, a better mom and a determined, stubborn runner. I had many thoughts throughout the race, some of which were, I must be insane to do this but most thoughts were great. I told myself when I wanted to stop at the 7km mark, we are ¾ of the way, we are not quitting now. Jordan has never had quit in his mind and I knew I couldn’t either. He has fought so many times for his own life, he has fought pain and agony, he has fought against all odds and so I had to fight. I told myself…. “Come on girl we don’t quit, you will never forgive yourself if you don’t push on”. I did stop and walk for a bit just to clear my head and take a few deep breaths, I almost cried at a few points when volunteers along the way were cheering us on and telling me how proud they were. How could strangers who I never met be proud, I know they say it to all of the runners but it really felt great to hear. One fellow runner that stayed within 20 feet in front or behind us the entire way told me she admired me for pushing Jordan the entire race and she knew if she could keep on pace with us she would finish too. I am glad we could help her to finish.

It has taken 2 days for the race to fully set in and my emotions to catch up to my body. I figured writing the blog post mid day was safer than at night perhaps after a glass of wine when the tears would flow. I am proud of myself, I am proud of Jordan and I am so honoured that along with generous donations Jordan and I were able to raise over $1035 for Thames Valley Children’s Centre. I am so glad that as we crossed the finish line we saw our family and our best friends there cheering us on. I wanted to reach out to our other children and squeeze them but knew I would cry. I wanted to hug our friends but also knew I would cry. So I gladly took our medals from the race volunteers, pulled the jogger over to the side and grabbed a bottle of water and took a deep breath. Ok maybe 100 deep breaths. I have many people to thank for standing beside me while I did this, to inspire me to run and keep running, for organizing this amazing event and to my fellow runners and friends that also ran this weekend. THANK YOU.

TVCC is an amazing organization and through their assistance Jordan has started walking in his walker. Their team of staff helps make miracles happen. To each and every one of them, I also run for you!! To my husband and my children, yes even the oldest who doesn’t think she is my baby anymore. Thank you for supporting me and I also run for you. Don’t ever give up.

“It doesn’t matter where you finish, it only matters that you stood up and finished what you started”

Jordan's Message - Love This had to repost!!

What OUR Special Needs Family wants you to know!!

I have thought long and hard about this post and I wasn't sure I wanted to write it. There are many like this floating around the wonderful world wide web but this is how I feel. 

These are things this Special Needs Family wants all others to read and understand. We are not Superheros we are just a regular normal family dealing with sometimes extraordinary circumstances. Our children are the superheros....yours and mine alike.

1. Just like all parents, we want the best for our child, no matter what. That is why we work so hard and strive to give all that we can. We aren't trying to change something that can't be changed or in denial we just want to make sure our child can reach his fullest potential and life his life the happiest it can be. We really are just a different form of every other regular parent or human out there. 

2. This is a huge one. WE ARE TIRED!! Being any parent is tiring some days, being a special needs parent is tiring most days. There are many sleepless nights, in our case the sleepless nights outweigh the well rested nights 4 to 1. Being a special needs parent and being exhausted isn't a different ball game it's a whole different league. Even if we get a good nights rest there is still a level of tiredness knowing or not knowing what the day is going to throw our way. Fatigue is something we learn to live with. We don't come with any extra energy or patience than normal people we just learn how to manage what we do have. We realize we can't give 100% of ourselves 100% of the time. We know that because of the emotional, physical and financial exhaustion we deal with on a daily basis we need to take me time to avoid burning out. We are so eternally grateful to the friends and family  that understand our fatigue and don't complain if we just can't attend a social function because frankly a nap is needed. Sometimes just an hour to ourselves to have a hot bath in peace or a coffee with a friend is all we need to feel like ourselves again. We can't be our best if we don't take a little time for us. We often come back refreshed and ready for whatever is going to be thrown at us next. It is a good mental break for us to be known for the fun, energetic, kooky and sometimes crazy people WE are and not just being known for being a special needs parent. 

3. We should be given a medical degree among all of the other jobs we do on a daily basis. More doctors, specialist, therapist and clinic appointments than you can count. Specialist appts are not just a few times a year but some monthly and some weekly. Therapies may be daily.  I feel like some days when we are talking to specialists and doctors I may have done more research in my 14 years of being a special needs parent then they have done in their entire career. Making ourselves aware of medical terminology, how to read xrays, CT scans, blood work and MRI's is just part of the job. Once we learn how to read them and what it all could mean often brings us a feeling of accomplishment because then we don't have to wait weeks or months for answers. I sometimes feel I could work in the Neurology Dept of our Children's hospitals and do it with my eyes closed. I am sure this is not the case but it definitely feels that way some days. 
On top of our medical degree we also deserve a diploma in Admin Assistant. The amount of paperwork, phone calls, scheduling and filing we do is insane. It could be a fulltime job some days. We could fill out 10 pages of paperwork just to be told an hour later our child doesn't fit the criteria and given a whole new set of paperwork to fill out.Phone calls are hard and we could spend an hour on the phone just preparing for a half day specialist appt to make sure everything is in place for when we get there. Only to find out something has been forgotten. Trying to navigate the specialists, resources and funding for our children is no easy task. We have "resumes" we give new professionals working with our children that include full medical history, dates of all surgeries, lists of all medications, names of all professionals working with our children, past and present.
We are nurses, caregivers, PSW, DSW, advocates, janitors, laundry machines, teachers, therapists, early childhood educators, researchers, bodybuilders (my arms are like rocks from lifting or transitioning our 14yr old), and most of all loving parents.

3. Please reach out to our children. We love it when people reach out or acknowledge our special children. Yes they are special but we also know they deserve to be loved and talked to/about just like other children. If it is not a good day to interact with our children we will let you know. Even our child who is nonverbal loves to be talked to and acknowledged. Just because they can't talk back doesn't mean they don't feel your voice and words. One of the happiest days I can remember was when a little boy asked if our son could go to the park and play with him. No he can't but from the mouths of babes our child sitting in his wheelchair drooling and not talking was just a normal child that looked like a fun kid to play with. That warms our hearts.

4. Some days we are jealous. Some days seeing other children do things our child never will makes our hearts hurt. It can feel like we will never feel those moments that other families feel. We will never see our son walk, play music, do sports, or even say I love you Mom and Dad. Sometimes we mourn for the things our child will never do or things that take so much longer for our children to learn to do. Sometimes we are jealous of even other special needs children, ones with more mainstream disorders, ones that have so much more research being focused on them or disorders that are more understood and accepted by the public. It is not easy to admit that but it is true. It does not take away from our pride in our son's accomplishments it just means sometimes we wish it could be different, not for us but for him. This point leads into my next point.

5. Sometimes we are lonely. Not lonely as in we have nobody to talk to or have a coffee with but lonely as in nobody will understand so why bother. We can't go to Mom groups and listen for hours while other Mom's brag about what their child is doing or learning. We don't fit in if we talk about our child's new medication, feeding routine or a new theraphy they are starting. Yes I have been looked at like I have a third eye. We often feel isolated when in a group of other parents. We don't have the same experiences or feelings about "little Johnny" going potty as they do, do we talk about how our 14 year old son is still diapered because he can't go to the bathroom by himself. Some days it is easier to just sit and not say anything then to feel like we are aliens. Divorce rate is extremely high in special needs families because sometimes we even feel isolated from our spouse. We are not always on the same page as our significant other, we are humans and all feel things differently at different times. We still have dreams and aspirations of our own as individuals, sometimes they are hard to talk about because we feel they may never happen and sometimes we dream out loud hoping someone else hears us. 

6. We have very real fears and they are never far from our mind. We have to ask ourselves the tough questions no parent should ever have to. What if I wasn't here anymore, who would care for my child, can I trust them to do it how I would want it done? What if my child wasn't here anymore, could I continue on a new life because there is no way it would be the same life as it has consumed so much of me for all of this time? We fear when they do sleep well that maybe something is wrong and we check on them often. We fear forgetting something, forgetting a medication, an appt we have waited months for, we fear others not understanding when we have a moody day. We fear mean or unkind words from others. We fear being isolated or forgotten about. Most of all we fear we are not doing enough, we can always do more right? What if that one thing we didn't do has a huge impact. We fear we will be financially strapped for our lives. We fear our other children don't get enough of our attention or they will be upset knowing any money we could have put away for their educations had to be used for special equipment, treatment or child care costs for our special needs child. My biggest fear is my so called normal children will resent me or their special needs brother because he got so much of my time patience and energy. 

7. We feel your words much more than you know. Please choose your words wisely. We have heightened emotions from lack of sleep, fatigue, racing minds and good or bad we feel more than the average person. Some days I feel like an emotional mess. Someone can say something so touching it brings me to tears in the middle of a farmers market and 20 minutes later someone can say something that makes me so angry I am sure I could reinact a scene from a horror movie and not think twice about it. Your words like, retard, retarded, short bus are disrespectful, hurtful and mean. It is making fun of someone for being different in a mean manner not a teasing manner. A pregnant woman telling her friends she doesn't care what her child is boy or girl as long as it's healthy is sort of a slap in the face for us who didn't give birth to healthy babies. You might as well say well I don't care what I have as long as it isn't like their child. Right or wrong some days we do feel this way. I often said with my last child I didn't care what I was having as long as he was healthy and I hated saying that because I knew he would be loved and cared for even if he wasn't. I came up with a new saying that was ' we don't know what we are having all we know is it's a child" A very true statement we weren't having a baby monkey we were having a child. Healthy or not he would still be our child. Your kind words, how we make you feel or what our friendship means to you means more to us than we could ever put into words. A simple gesture or text message letting us know is all it takes to brighten our day. We try to show our friends how much they mean to us as often as possible. Choosing to send us an inspirational message or just a hey I hope you have a great day could mean the difference between a bad day turning good or a good day turning great.

8. We don't want you to fear us. My child may be different than what you are used to, he may look or act different from others but don't fear us. Ask questions we will answer. We love talking about our children, their struggles, their accomplishments and their needs. Don't be afraid to ask about his disabilities or his abilities. I will always want to share our son's life story with others. I hope he inspires others as he has me. Please if my child is having a meltdown or a bad day offer your assistance but don't be offended if there is nothing you can do to help. If my son has a seizure in your presence please don't be fearful, calmness and confidence helps much more. Understand I am confident in my abilities to deal with the situation and if not I am a great director and can tell others what I need to get through this. Seizures can be scary but if you remain calm chances are you will feel our son's strength as he battles through it. 

9. We are human and sometimes we need help. Sometimes I get cranky, moody or just want to run away. Sometimes I need help and don't know who or what to ask for. Sometimes I feel like I should be locked up for my emotional changes and sometimes I feel like Wonder Woman. Some days we feel like we can't continue on like this 1 more day but most days we wouldn't change it for the world. I am a woman, a lover and a fighter. I would walk to the end of the earth to help a friend in need. I try to teach all of my children empathy not sympathy and to always help one an other. I can't remember the last time I told someone " No I can't help you"  it's not in my nature. We have been challenged and pushed beyond our limits, we have fallen over the edge and come back for another round. We wait for those curve balls to be thrown our way and hit it out of the park. Not every challenge is met with the same intensity however we do strive for the same outcome in the end. Sometimes our children need attention from others because we have spent all of our time with our special needs child. It takes a village to raise a child the saying goes. Well my special needs child could use a village of his own and another village to make sure our other children are well rounded. 

10. WE APPRECIATE YOU!!! Each and every one of you reading this, we appreciate you, we love you and we are always here for you. We may not be perfect and we may have to say "I'm Sorry a time or 2" but if you read nothing more from this blog post know we appreciate you and who you are. We love you and love your kind words, warm hugs and your time to read this. 

Nothing in life is ever easy and everything worth winning is worth fighting for. This is our fight and we will win!!

Epilepsy Sucks!!

The Best Summer Yet

Well summer is over and Jordan has started high school.

I don't even know where to begin this summer but it definitely was the best summer Jordan has had in years if not ever. NO major seizures and he was so happy and social. We were able to do things as a family and not worry about his mood or his illness. He went to many baseball games and truly enjoyed them again.

I could stay with him at a baseball tournament for the whole day and he would smile, laugh and clap the entire time. It sure is nice to spend these days with Jordy. It has been so long that we could spend a whole day or even a whole weekend out with Jordan being active that I forgot what it felt like. He is amazing and he makes me smile every day. 

I think Zander really noticed a change in his brother this summer as well. They bonded and became close. Zander loves helping with Jordan in any way he can. 

The summer that started off so rough made us into a family again. I am excited to see what the next few months bring. Jordan has been doing very well with the new meds, his blood levels have started to come back to normal and other than the first week of school no big seizures.

The first week of high school was a little rough but Jordan always hates change. He had several large seizures and his shunt was malfunctioning but we got it worked out and he was good as new again. He seems to enjoy his new EA's and his new school and is becoming well adjusted to the changes.

Sam is still home with us and doing a bit better each day. I think she likes seeing her brothers often even if she wishes she was on her own again. All in time. 

Our friends and our family have given us strength through some of the roughest moments any family would have to deal with and now it is our time to show them the strength did not get wasted. 

Through our battles we have become the family we are today. Some days a bit frazzled, many days a whole bunch of crazy but most of all more love than words could ever explain. 

Jordan's Grade 8 Grad 2014

Well last night Jordan graduated grade 8 and next year he will be on to high school. I can't believe we have come this far. I cried like a baby at his ceremony but they were all happy tears.

I am so proud!!