A Brother's Love

I still remember the conversation I had with Magnus back on March 21/14. The morning of World Down syndrome Day. Lennox was nearly 5 months old. I figured I'd best at least give him a heads up as to what WDS day meant and why we were celebrating it. It was short and sweet and went a little something like this...

Me: Magnus, Do you know why you and Colby are wearing Funky socks today? 

Magnus: Yeeesss...World Down syndrome Day (picture a 6 year old drawn out tone)

Me: Do you know what that means?

Magnus: mutters something about funky socks...

I explain that wearing funky socks is an expression that we all are different. Like socks. I'm not entirely sure I understood the meaning behind the whole sock thing either. Still very new to the community and learning about DSA ourselves, it seemed like the thing to do, so we just went with it. 

I proceeded in showing him a book called Lightness given to us from Ups and Downs. We looked through it together, reading the children's names. I don't know if this was the best approach, but I wanted to see if he noticed any similarities as we looked at each new smiling face. He asked questions as to why "Jimmy" had glasses or why "Ella" had tubes in her nose like Lennox did when he was really small. We chatted about differences and similarities of all children. And then I tried to explain what Down syndrome was... I asked if he thought any of the kiddos in the book looked the same or different than him or I. He replied, no. And this is where kids are so awesome. He just saw other kids. Some with glasses, some with oxygen. Some with pigtails and some without. And that was that.

We have openly talked about Down syndrome in our house for months prior to Lennox's arrival. It was commonplace and not something we tried to hide. Lennox would be born with Down syndrome...it wasn't a secret nor did we want our children to see as a negative. So I continued in telling him that the children in the book have Down syndrome. I then tried to explain to him that Ds is not a disease. People with Ds are not sick. It just means that they have a little something extra in their bodies that changes things a bit and that wasn't a bad thing. It just may take them a little longer to learn things, like crawl, walk or talk etc. That it's ok because they still will learn how to do those things. And it's always important to be patient and kind. He said he understood...but I'm not entirely sure if he really "got it". So I asked him if he thinks he knows anyone who has Down syndrome...and he replied "no"

Me: Yes you do...your little brother has Down syndrome.

Magnus: No he doesn't. 

And that was the end of it. He walked away. He was done. Checked out of the conversation completely, leaving me with my book and a small sense of failure. Wondering if maybe my approach was a bit off while gently reminding myself that he IS only six...

In recent conversation Magnus has asked me why Lennox isn't walking yet. It was anothrr perfect opportunity to explain that because his little brother has Ds means that he has to work a lot harder than other babies to move his muscles in order to walk. He seemed totally ok with this. However he was very concerned about Lennox's webbed pinky toe. Yup a little toe upsets him. He's worried that it will trip him up once Lennox does start walking. I reassured him that his toe would not and has not interfered with him getting around. I find it interesting though. He noticed that his toe is different, but hasn't noticed any other physical characteristics. I often wonder what our conversations will be like as Lennox grows and his characteristics start to change. For now, we are informing him on a need to know basis. He doesn't need to know anything more than what he feels. Love is love and that is that.

A year has passed since our first little sit down and we have since discussed Down syndrome many many times. We joined other families at our Street Meet this past June and he is already asking about our team shirts for this year's walk. World Down syndrome Day 2015 was much bigger than it was last year and he and his friends LOVED the idea of wearing their funky socks again. 

To say that Magnus has an understanding of Down syndrome is still uncertain. But we have established a base of knowledge and at the end of the day, it really doesn't matter how much he actually knows. At this point in time, Magnus just sees his awesome little brother and in turn is learning through us about unconditional love and acceptance for all...it doesn't get any better than that! 

Sometimes being a brother is even better than being a Superhero😍#trulyblessed

Follow us on Facebook at:
Loving Lennox - A story of peace, love and Down syndrome

Spread the word...

Even before our journey began, I thought it was important to be considerate of others. Growing up, I never treated anyone who was seen as "different" any differently and I certainly NEVER called anyone with a disability the R word! Although I do plead guilty of having used the slang variations on occasion in my much much younger years. I simply cannot defend myself, nor am I even going to try. It's shameful. There was no thought going into how it actually sounded. I am aware now more than ever, that words hold a lot of power and have the ability to cause a lot of pain.

I am not one to get on my soap box and preach. I am not. BUT I do like to stand up for what I believe is right. And in this day and age, using the R word simply IS NOT RIGHT. Some rationalize by saying "It's a generation thing". Call it what you will. It still doesn't change the fact that is inconsiderate, inappropriate and disrespectful. Not to mention, "so last century'!

In the middle of the 20th century, the terms "mental retardation" and "mentally retarded" were invented to replace the previous set of terms which were deemed to have become offensive. By the end of the 20th century, these terms have become widely seen as politically incorrect and in need of replacement(Wikipedia) I am so glad that ship has sailed and anything medically relating to the word "slow progression" is now considered in certain instances, a restriction. The new and more acceptable terms used are intellectual or cognitive disability. However, I have still heard the retired terms used on numerous occasions by medical professionals. I shake my head. How can the rest of society be aware and you with all your knowledge still be so incredibly ignorant? If you are a professional, BE aware. Lead by example. BE professional! 

The slang use of the word "retarded" to describe a situation or an event or otherwise sounds absolutely absurd. And honestly, when I hear people use this word in this context it literally takes my breathe away. I never imagined I could experience a physical reaction to a word. But it seriously feels like a sucker punch in the gut, even though it has absolutely NOTHING to do with me or my child. It's not right and honestly, it's a lazy descriptive word that really doesn't even make sense and sounds rather crass. So if you're one that uses this word to describe a bad movie or an outrageously overpriced item..STOP and please think of an alternate word. A better one.

And if you call a person...ANY person the R word...well then you're just plain rude. If you call a person with a disability, the R word, then you are an ignorant a$$ and maybe a few other choice words. 

People ask..Is it EVER ok to use the R word? Unless you are speaking in regards to actively slowing an object down, then the answer is yes. If not, then NO.

I have heard so many stories where this word was used offensively and when confronted, the individual becomes defensive and sometimes even belligerent. Seriously?! That just blows my mind. Why get uptight if someone calls them on their ignorance? Are they THAT pigheaded that they refuse to admit they slipped or made a poor choice in words? Are they embarrassed and feel they need to defend themselves? GET OVER YOURSELF!!

I can preach all I want in a closed forum. I do want to help spread the word to end the word, however, I also like to avoid confrontation. It's part of who I am, but I know that day will come where I will have to defend my son or one of his friends. And when that day comes, Lord help that person!

In the meantime, if you DO use the R word from time to time unintentionally or otherwise, I ask you to kindly STOP! Respect others. Rethink of an alternate word. Remove it from your vocabulary. You may think you're only one person but by being a leading example, others around you may follow. Let's end this RIGHT HERE, RIGHT NOW! Take the pledge...for Lennox. For his friends. And for everyone else with a cognitive disability. People are people. If you have already taken the pledge, we thank you! To see more visit www.r-word.org 

Ok, I will get off my soap box now. 

Follow us on Facebook at Loving Lennox - A story of peace, love and Down syndrome <3

It's all okay...

Dear new parent,

Congratulations on the birth of your beautiful baby! She's so perfect and tiny. 10 fingers and 10 toes and the cutest button nose you have ever seen. But there's more. You have just become a parent to an earth angel and she has Down syndrome. Two words you never thought you'd hear.

It's ok...that suddenly you feel like your dreams are shattered and your heart breaks. You're angry. You're scared. You're grieving. It feels like the end of your world as you know it. I get it. I felt all of the same emotions...I just got to feel them a little earlier. I am not sure which is easier, and it doesn't really matter. We all have our story. And we all process and cope in different ways. I am not going to tell you what to feel and I'm not going to tell you what not to feel. But I will tell you, it's ok to feel what you need to feel. And I will gently remind you that there is still so much to celebrate! You have created a beautiful baby. A precious little being. A valuable life. He may not be what you were expecting, but he is still very much your child and still needs you...to cuddle him and to nurture him. He needs you to accept him and to love him. 

It's ok...if she feels a little "softer" in your arms. Hold her close. Look at that sweet face<3 So beautiful! She looks like you...like your older daughter...or like her daddy.  She has the most AMAZING eyes that will disappear when she smiles. They will stop you in your tracks and warm your heart. And when she looks at you, she will see into your soul. She will see you for you, and will unconditionally accept you for all that you are and all that you feel you are not. 

It's ok...that you may be scared. You know nothing about raising a baby with special needs. You may have preconceived ideas about Down syndrome from when you were a child. Your doctors may have told you of the things that your baby can't or won't do. None of that matters now. YOU write your own story. NO ONE can tell you what your child will or will not do. There are no guarantees with any child. Your child with or without Down syndrome may or may not do things that you dream for them. It's ok...NO ONE knows. But s/he will LOVE you...that IS a guarantee!

It's ok that s/he will have to work a little harder and may take a little longer to reach those "milestones".  And it's ok to get discouraged sometimes. It takes time. But s/he will get there, with your help and when they do...you will scream with excitement. NO ONE can tell you what you child can or can not do. YOU are his teacher. His guardian. His biggest advocate. You are his mother. And he is your whole world! And that's better than ok. It's down right awesome! 

Welcome to the club, Mama<3  It's all going to be ok!

Love,

A very lucky mom to a very special little boy

2014 in a Nutshell

Wow! I can hardly believe that it is already the middle of January! Where has the time gone?

I feel negligent in the blogging department as of late. I can make up every excuse in the book, but it all comes down to writer's block. I got nothin!

But I will quickly recap 2014...better late than never ;)

This time last year we were still juggling oxygen tanks and tubing. Struggling with feeding issues and gaining weight. Ended up having to give up breastfeeding all together, thanks to a nasty bout of Mastitis, which proved to be a blessing in disguise. As soon as Mr. Man was getting the calories his little brain and body needed, he flourished. He caught up in weight and started being more alert and reaching those sweet newborn milestones, like smiling and holding up his head.

February took us to Mexico for the first time with a little baby in tow. Thankfully we retired the oxygen at the end of January which allowed us to be foot loose and fancy free throughout the streets of Nuevo Vallarta. We were told by numerous fellow vacationers that he was the cutest baby at the resort! I would have to agree with that one ;)

March we started Water therapy and this is a month for the books as we met our first friends within our Down syndrome community, which we are very grateful for. I can honestly say...the Down syndrome community rocks! This was also the month that I shared with extended friends and distant family that Lennox had Down syndrome...through starting my first FB page...gasp! The support was overwhelming! Like I said...LOVE LOVE LOVE this community and I love the fact that Lennox is changing hearts and changing the statistics with every new milestone he makes.

The months that followed were just a lot of the same shenanigans. Therapies, appointments, and coffee dates. A certain part of the day was dedicated to play therapy at home. Lennox was thriving. That's all I could have asked for. The rest was just gravy.

We made our first road trip to my hometown in Manitoba, which was a success. I loathe road trips, but this one was exciting as the rest of my family got to meet Lennox. I also managed to revisit the many "monuments" of my childhood. Winnipeg is the city that built me.

Once summer ended and school began, Lennox started attending PREP, which is an early learning program specifically for children with Down syndrome. We sing, we play, we focus on the basics of speech therapy, self awareness and being aware of others. We play, we visit, we laugh and sometimes we even cry. LOVE LOVE LOVE this program and love the people that have grown to be part of our family.

October marked a year of Loving our sweet Lennox. What a year it turned out to be...the ups and downs...but I wouldn't change a single moment. He has forever changed our family. And for that I am eternally grateful. LOVE LOVE LOVE my family! If you haven't seen his birthday video, be sure to check it out on Facebook.

I went back to work part time at the beginning of November. It was a difficult transition for me. I am more settled now but still miss his sweet smile like crazy. Having Lennox has opened my own heart and mind to the world of special needs. I feel I am more compassionate, more patient and understanding in caring for these families and their children. I have come to accept and appreciate that everyone has a story, and I am more than happy to hear it. I love my job.

Christmas was a quiet one for our family of 7. This year of all years has caused me to reflect and made me realize what truly matters in life. As we all sat unwrapping our gifts on Christmas morning, I had a different sense of gratitude and appreciation. The greatest of gifts didn't come wrapped in a bow. The greatest gift of this season for me was self growth. I am altogether a different person than I was this time last year...and it's all because of my awesome little man that blessed our family and our home with his sweet magic.

Lennox has been growing like a weed and is reaching his milestones. We work hard and he has the determination of his father. 2014 was a busy year. An awesome, busy year. We met many new friends whom we love dearly and look forward to watching our kiddos grow up together whether in be in real life or on FB. I have learned the true meaning of patience. I have a new sense of appreciation for the little things and accept the things that are out of my control. 

This upcoming year will be filled with many more new adventures as we continue to navigate this road of raising our beautiful boy. I look forward to seeing all the amazing things he will accomplish and the change the world is about to encounter. #IMREADY Go Lennox!

You can follow daily updates at Loving Lennox <3

Just because...

When we learned at 14 weeks that our baby would be born with Down syndrome, we were surprised, but not really. After all I was well over the age of 35 and knew that our chances were high regardless. We chose to have a CVS to confirm...but just because I had prenatal testing doesn't mean that I had any intentions of putting a value on his life. He was our son no matter what. And I believe every life has value!

Just because we were sad following the diagnosis doesn't mean that we didn't want him. And it certainly didn't mean we loved him any less just because he had an extra chromosome. There now was just a little more to love <3

Just because Lennox has Down syndrome doesn't make him any less of a member of our family. He brings so much joy to our daily lives and his smiles make us smile from the inside out. He truly is invaluable and we couldn't possibly imagine life without him. And by him, I mean Lennox WITH Down syndrome, not who he'd have been if he didn't have that little something EXTRA. He is who he is meant to be, and so are we because of him.

Down syndrome is misunderstood by so many. Society has a certain idea of what Down syndrome is and that in turn places a certain level of fear into those planning to have or already expecting a baby. It's true, there are things about raising a child with Down syndrome that will differ from raising a child without Down syndrome. There are some more specialized needs that may require a little different approach to parenting and take a little more patience. But just because it may take a little longer to learn and do things, does not mean that Lennox or any of his friends will never be able to do things independently. Just because there is a degree of cognitive disability does not mean you will "have a child forever". Individuals with Ds are becoming more and more independent with the growing amount of resources and services that are available. You can't put limits on the possibilities of the abilities. Lennox shows us more and more every day what he is capable of achieving on his own. And his determination is something we all could learn from. And for the record, there are no guarantees that parenting will be a cake walk just because a child doesn't have Ds. Parenting is hard. PERIOD.

Just because Down syndrome is different, does not mean it is wrong. Just because Lennox may be seen as "different" does not mean people have the right to judge him based on his differences. Being different is what makes a person YOUnique. The world would be a pretty boring place if we all were the same. Take the time to see past the diagnosis. There is more ability to be seen than disability. We don't see Lennox any differently than our other kids. We are equally proud of each and very one of our 5 kiddos. They all are different and each bring something unique to our family. Lennox has Down syndrome. He may be a little delayed. He may need someone to watch over him when we are gone. But then again, he may not. Just because the literature says one thing doesn't mean it is always so. Research for Ds has evolved and in turn the stats for Down syndrome are forever changing. We believe in many things...but most of all we believe in Lennox and will never stop believing...EVER!

Just because I chose to share Lennox and our journey with the rest of the world, does not mean I am looking for anything. I share him because I am proud, that is no secret. I want to educate and bring awareness to others. There is great hope for children with Down syndrome. I wish to open as many hearts and minds as possible and if I can help even ONE family find peace, to see the beauty and celebrate the gift that comes with having a child with Down syndrome then I have achieved my goal! And I will keep sharing the love... just because it's just too awesome not to!

 I mean seriously...who wouldn't be happy seeing this sweet smile everyday?