I didn't get around to sharing this on Down Syndrome Awareness Day (which was at end of March), but shouldn't every day be Down Syndrome Day? ;) I think so! My nephew Cameron has brought a light into our lives. He added something to our family that can't really be described. It is an element to life that not everyone gets to experience, and I feel so blessed to have experienced it personally in my life. With the love I feel for that boy just as his Aunt, I can't even imagine the love my sister has for him as his mother. Everyone should get to meet and love someone like Cameron. It is a life changer.
With so much family in town last week, and it also being Canadian Thanksgiving on Monday, we were able to have Canadian Thanksgiving together the Sunday before! Growing up I always got two Thanksgivings, and I loved it.
Last Sunday we met up at a family friends house and all brought different parts of the meal. It was a fun night full of eating, playing pool, making music, talking, and laughing. I basically cuddled my sweet nephew all night long. The best part of the night was getting him in his pjs and ready for bed and being able to feed him while he fell asleep in my arms. That little guy just makes me so incredibly happy I tell you. When he smiles... he smiles BIG, and it fills you up! It is the best.
It was such
a great night. Basically when my family is all together, everything is
right with the world. Everything else falls to the background and we
don't focus on anything but each other, and I love that.
Trevor just sat right on down and played this harp like he had been doing it for years. I guess that's just what comes with knowing guitar and piano so well, you can play almost anything! It was so pretty, I think we need a harp now.
Last week my Sister Kira and her husband welcomed a new child to their family! Their third son! I have talked about my sister and her family many times on this blog. I have talked about their two adopted sons Evan and Landon. I have talked about how Evan has SMA. I have even talked about my sister's struggles with fertitlity.
Adoption can be a crazy process, one day you have two kids, the next day you have three! Kira and Justin have gone through a lot and are the most incredible people and parents. I think you should all go read about my new nephew Cameron :)
A little nervous and with a slight hesitation I slipped one hand down his back, and the other on his chest, and then, timing it perfectly with his weak cough, I squeezed.
I squeezed his tiny, frail body between my two hands. I repeated this a couple times, not wanting to squeeze too hard. I didn't want to hurt him.
Even shook his head in disapproval, and under his struggles to get a good breath, told me I needed to do it harder.
With that I did it harder, until together we had made it successfully through his coughing session.
Last summer my mother and I went up to Canada to go to SMA camp with my sister and her two boys. Her oldest son Evan has SMA.
By the end of the trip I finally got comfortable holding Evan, and helping him. For that I am so grateful I went to SMA camp with him.
You see, ever since I had found out that my nephew had this disease called SMA, I was scared to help him. I am almost embarrassed to admit that, but I was. I didn't want to hurt him.
Because my sister and her family live in Canada, I hardly get to see him, so I had never really been around Evan long enough to learn and feel comfortable properly helping him with different things.
One of Evan's first Christmases with us Kira asked me if I would take him to the bathroom. I didn't show it, but I was petrified. I wasn't sure how to carry him without hurting him, and to sit him on a toilet.... what if he fell off? You see, his body is for the most part completely limp. He has little use of his muscles, and if not situated correctly, will fall like a rag doll to the floor.
I was horrified that he would fall, and it would be my fault, and because of that, I avoided tasks where I felt I could hurt him.
I am happy to say that today I am 100% comfortable holding him, moving him, and assisting him with his different needs. Like helping his body to cough... a task we take for granted everyday.
♥ ♥ ♥ ♥ ♥♥ ♥ ♥ ♥ ♥
What is SMA?
For those of you wondering, SMA is short for Spinal Muscular Atrophy. It is caused by a missing or mutated
SMN1 gene. The SMN1 gene produces a protein called SMN protein that
sustains the protective lining that surrounds normal nerve cells. The
severity of the symptoms depends on how many back up genes you have.
Some people have plenty of backup genes and some don't have any. A baby
born with out the SMN1 gene and no back up genes will not live to see
his first birthday. With out enough of the SMN protein the nerves that
control voluntary functions of our body (arms, hands and even
swallowing) begin to waste away and eventually they will fail
altogether.
It is surprising that before Evan blessed our lives I had never
heard of this disease before. One in every forty people are missing at
least one of these genes but they don't know it because every human
being has two sets of genes, one from your mother and one from your
father. One in 6,000 babies born however are unlucky enough to receive
two sets of bad genes, one from each of their parents.
It is in fact
the most common genetic childhood disease and the number one genetic
killer of children.
What is amazing about SMA is that it may well be the first genetic
disease that can be cured. It is the first disease that they are trying
to treat with stem cells and at least two different treatments are
seeing good results in animal studies. Unfortunately it can be a long
road from animal studies to a cure. The first cure is an attempt to grow
new nerves using stem cells. This treatment would also be a cure from
spinal cord injuries. The doctor treating Evan told my Dad that they have
successfully grown new nerves in a rat. The problem is that the nerve in
a rat is about an inch long while the nerve from my spine to my hand is
a nearly a yard long. A much greater challenge.
The second treatment is actually preparing to go to human trials and our
little Evan is being considered for this trial. I know little about it
but what I've been able to read it sounds like they have an injectable
SMN protein. One shot and your nerve cells are protected for several
months. It works in a Monkey now we need to see if it will work in a
man. I don't think this shot will allow Evan to grow stronger but what a
blessing if it will prevent him from getting worse. It would be an even
greater blessing if a new born child could receive these shots and live
a normal life. A friend of my dad's develops tests that are used to screen
newborns for serious diseases like SMA. He told me that they don't
screen for SMA because even if a child is found to have it there is
nothing they can do for him. Now perhaps they will start screening them.
My sister Kira called me one evening and said she wanted my opinion on something. She said it was a little crazy and out there, but she wanted to do it anyways. She told me her idea, and I thought, what the heck?! Why not? If nothing comes from it at least it will spread awareness... and hey, if soldiers in the military can get celebrities to go on dates with them through a YouTube video... why couldn't we make something happen from this?! Last Christmas we made a Youtube video, and put it up a couple months ago.
My sister Kira (Evans mother) is a professional Oboe player. She is
trying to draw attention to the disease and has made the following video
to try and get her hero Josh Groban to help her write a song with her where she can play her
Oboe that she can dedicate to all those families who are living with
this affliction. With Josh Groban's celebrity, creating a song that could be donated to the awareness of SMA, it could be huge! It probably won't happen, but what the heck, why not try?
Wouldn't it be great if Evan could actually see a cure in his
life time?!
Come on all you social media addicts such as myself, lets facebook, tweet, &blog about this video!
Let's spread awareness about this disease that effects so many children's lives!
Evan is such a sweet, fun, creative and smart boy. He loves everything Pirates, and is caring about other people. He is so funny, and constantly is saying things to make me laugh. I love him so much, and I want him to have the best life he can possibly have. He has some pretty great parents who are already doing that for him. I am lucky to be his Aunt.
You may remember me talking about my older sister Kira and her son Evan. My nephew Evan was born with a disease called SMA (Spinal Muscular Atrophy). Fortunately for Evan there is a brand new special preschool for children with special needs right in his community! They do therapy with the kids, and cater to their individual needs. Some might say luck, but I think we all know that God loves his children and takes special thought and care for them.
The local news station in the city where they live interviewed my sister Kira and my nephew Evan. They are highlighted through the whole clip and I thought that they did such a great job! I am so proud of Evan and all his hard work, and for my sister Kira who works tirelessly to make sure he gets what he needs and more. I was a little surprised when I got emotional watching this --- I mean it is more informational then anything.... but I just know how much they go through and how much they love their son, and how much we all love him, so I guess that is where the tears came from when I watched this :)
Those of you who know me, may know that my older sister Kira has had infertility issues. Once they realized that the chances of Kira getting pregnant naturally was slim to none, they decided to look into adoption. Since then my sister and her husband have adopted two of the cutest boys, and have given them the most amazing life, they truly are lucky boys, and Kira and Justin are lucky parents. I have watched my sister struggle with, and overcome the idea that she may never have the experience of being pregnant. When I got the phone call from her that she was pregnant (naturally by the way), I was in total and complete shock. Then I just started bawling. Kira and Justin are such deserving parents, and I couldn't be happier for them! I am happy that Kira will get to have this experience, as well as excited for Evan and Landon to get a new addition to their family. They are such amazing parents and I am thrilled for them! THRILLED :)
(Summer 2010 Hayley tired after a day at the Calgary Zoo)
My little old lap top is about one day from dying on me. I have had it since before I started college yikes!
Thankfully when I need to do something super duper important Trevor lets me use his nice Mac.
Anyways, I have been going through my computer and trying make some more space and room by organizing my photos and putting them on an external hard drive.
(so one day I don't loose all my memories captured in beautiful pictures!)
I came across this while going through my pictures.
Gosh I love this picture.
More then that I love being an aunt.
I told my dad once that, I don't think I could ever have my own children now.
I mean... if I love my nieces and nephews THIS much...
what would it possibly feel like to love my own child?
The thought and all that comes with it, seriously scares me.
There is a really cool lake by my sister's house in Calgary. Believe it or not when it isn't winter in Calgary, it gets pretty dang hot! So the girls took the kiddos and some snacks and we all hit the lake :) It was such a fun day. The kids loved the water and the sand. It was a nice relaxing morning. Later my brother and Dad came to join and we took the canoe out. Evan though he was on a pirate ship :)
It was a great morning and afternoon, and I loved eating away on some good ol' Canadian snacks. It felt like Christmas (because Christmas is the only time I get Canadian goodies.) It was a grrrreat afternoon day!
an extremely large Cheezie :) YUM
such a happy girl
Brandon showed up acting like his usual self
Sarah's eyes were closed in almost all my pictures hahaha
a lovely perfect day with the family in the sun :)
P.S. LAST CHANCE TO ENTER THE GIVEAWAY! ENDS AT MIDNIGHT!
Oh my Landon.... this little chubberz will be one this August. He is my older sister's second son. He is basically all about food, and smiling! This boy is just SO happy! His laugh is contagious, and his face just lights up when he does. He just keeps growing and growing and is just a thick heavy ball of boy, this is why everyone calls him "Moose." I just can't wait until he gets older and we can start to really hear him talk. I personally think he will be one of those guys that is a gentle giant. Just a big dude, that is a total teddy bear. My favorite talent of Landon's would be his Sumo Wrestler impression. Now trust me I have been to Japan and have been to a Sumo wrestling competition and met them after... Landon pretty much has this Sumo thing down to a "T"...
Love you LANDON... Can't wait to see how much even bigger you have got since I last saw you!
Thanks for stopping by! My name is Alycia, and this blog has been such a fun space for me to share everything from the very meaningful, the mundane, and the frivolous stuff that falls inbetween. I guess you could say this is a digital journal of sorts! I believe that life should be enjoyed and celebrated, and invite you to join along in the party! ❤
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