Reflections

I often have thought about where life was 11 short months ago, when we discovered that not only our life was changing by adding another mouth to feed, but changing in a way that we felt unprepared for. Five words were spoken. "The baby has Down syndrome" (not your baby, but THE baby) Boom! There it was...our prenatal diagnosis!

I often reflect on that day. I think about our initial reaction of grief and fear for the future. And how the pain was so raw. I remember the hollow feeling in my chest. The heaviness in my heart. And the unimaginable burden of making a decision. It wasn't the fear of "imperfection". It wasn't the need or want for "perfection" either. It wasn't the "ideal" or even the idea of the "ideal" that was lost. For me, it was the fear of the unknown. I can't believe that was even a thought now, but I didn't know anything but "perfect" with my other babies. 

What does perfect look like? The definition of perfect is "having no mistakes or flaws" . So is it the beautiful blue eyed baby that you see at the Grocery store? Is it the chubby cheeked toddler playing in the sand at the park? What about the strong little boy chasing his ball? Is it being the prettiest, the smartest, the most successful? What's your definition of perfect?

I didn't know at the time, in those moments of self pity and despair, that "perfection" was being disguised. I was so consumed by news of the diagnosis, that I was missing what truly was important. We were having a baby! There is nothing more beautiful or perfect than that. If there was any decision to make it was that of any parent in the world. To help my son live the best life possible. To help him fulfill his dreams, reach his goals and be successful at whatever he sets out to do. There are few guarantees in life. But in our eyes, this sweet unborn baby was PERFECT. Extra chromosome and all! And he was already guaranteed to be loved to the moon and back... <3 

After working at the Children's Hospital for many years and caring for many children and their families, I have seen enough to say that Down syndrome is more than ok with me. I remember thinking and I even said it out loud on a few occasions... if ever I were given a choice in having a child with special needs, it would be Ds. Is that wrong of me to have thought or even voiced? I don't think so. Because someone was listening. Someone heard my words and blessed us with Lennox. A perfect baby who will grow up and have all the hopes and dreams that every child has. And he IS the beautiful blued eyed baby at the Grocery store. He will be the chubby cheeked cutie in the sand, and the strong little boy running in the field. My sweet child is just as perfect as anyone else's. And he's mine. Well technically I have to share him with the rest of family, but you know what I mean. 

I am so thankful that I hung on. I couldn't imagine missing all the love and beauty that Lennox brings to our lives every single day. I can't imagine what life would be like if things were any different. All I know is that this is what our life is supposed to look like. And it's a wonderful life! Beauty is in the eye of the beholder. What do you choose to see? 

As I reflect, I feel the need to clarify (in case anyone is wondering) why I only speak of MY feelings and thoughts in my posts. I'll tell you it's not because my hubby doesn't have any feelings or thoughts...he does. I just don't feel comfortable sharing them in a space that is not his. I will tell you though, Paxton was and is my pillar of strength and that I lean on him more frequently than not. He is an amazing father and a loving and very tolerant husband. Pretty close to perfect, but don't tell him I said that;)

Have a safe and happy long weekend. Happy Easter <3

One day at a time

It has been an exciting couple of weeks since starting a page for Lennox on Facebook. I started it with hopes of bringing awareness, acceptance and inclusion. I still think we can do that. It'll just happen one day at a time. And I'm ok with that. So thank you to all who follow us! Keep sharing the love for Down syndrome :)

I really enjoy following other children and their families. It has been enlightening and also very humbling. I feel that we have been very fortunate that Lennox is as healthy as he is (aside from this nasty virus that won't go away) He is healthy. He is strong. Having said that, it doesn't mean I don't have worries and fears. I actually feel worried more now than ever...

I have read stories and seen pics of little ones with the many health issues associated with having Down syndrome. The sweet little babes with cardiac problems requiring surgery. Too young to have such a big mountain to climb. Other little ones with bowel and tummy troubles needing possible interventions and countless follow up appointments. Kiddies with AML/ALL and going through chemo. It really tugs at my heart. It is so close to home. That could have easily been us climbing those mountains, and my heart goes out those families. I pray for them and their precious warriors. I admire their courage and their strength. Their faith and their hope for the future. And I see the power of love. It is the love for their child that propels them through each day. One day at a time. God speed <3

I did all my research for Down syndrome during my pregnancy. I am aware of the obstacles and challenges that may lay ahead. I feel prepared. I feel Team Lennox can do this! But truly, how prepared can one be? And I admit, I am frightened for Lennox's future. Facebook has been inspiring in so many ways. However, it has opened my eyes to the many possibilities that could be around the corner. The fear of the unknown... Will he stay healthy? Will he be sickly every winter? Will he develop respiratory issues? Will he need oxygen again? Should I worry about the repeat blood work in 6 months? The list could go on forever. I feel overwhelmed and a sense of panic at times if I think too hard about what may come. And I feel ashamed that I am worrying about what could be, while others are experiencing it first hand.

There are many stories stating that raising a child with special needs isn't easy. The rewards will be worth more than gold, but not without a lot of hard work and a little heartache now and then. For me, right now it seems pretty 'easy'. Lennox is still a baby and he needs what every baby needs. Love and lots of cuddles. I am very comfortable with meeting those needs:) But I know as he grows up, it will become a little more complicated. There will be challenges that I am not familiar with. I want to be the best parent I can be to our little boy. I want to be his biggest fan, biggest advocate, biggest and best of everything to him! I want all those wonderful things but sometimes I wonder...can I actually be everything I need to be? Not only for Lennox, but for the others as well? I know I am strong now. But will I always be? 

I can't predict the future. I can't control whatever plans are in place for us. I can only believe that God gives his toughest battles to his strongest soldiers. I may have fears and doubts for the future, but I am human. I also know that right now, I AM a soldier. I AM the glue that binds. I AM a parent to an amazing child! All I can do is take each day as it comes. 

Team Lennox...Booyah!

Sick again!

We have been battling a cold for nearly a month now. It started when we returned from Mexico. Despite my best efforts to protect Lennox from catching the bug, he's managed to pick it up. And it is hanging on...

It started with a nasal congestion which progressed to a wet yucky cough and trouble breathing caused by his clogged throat. If all he'd do is give a good cough or ah hem! It was bad enough to warrant a visit to Children's Emerg. Being a nurse isn't always the best background to have as a mother. You either overlook things or dismiss them as nothing or you overreact because you've seen something similar before and it wasn't good. So off we went. Of course his breathing improved once we got there but they still did nasal aspirations for RSV, and he received a dose of oral steroid to help with the stridor. Turned out to be just the common cold. Phew! It lasted about 10 days or so though. Giving us only a few days reprieve and now it's back again! Ugh:(

It's a little frustrating for me. And I feel bad for him. He remains happy but you can see it in his eyes that he just feels blah. I've read that kiddies with DS seem to fall ill frequently during the winter season. So winter can end any time now. 

Circle 21

Ok, first off I have to thank everyone for recognizing World Down syndrome day yesterday. Next year I think I'm going to really do it up right! Not sure what I'll do yet, but it'll be good. Hope you're all still following so you can be a part of it too:)

Today, I'm not going to go on about how amazing I think those with DS are. No. Not this time. Because I think if you're following this, then you already know and obviously agree. So once again, I thank you!

What I will ramble on about is the Down syndrome community and how wonderful it feels to be a part of my new found family. The connection we share as strangers is truly unremarkable. My Circle 21. I have spoken to new people like we're old friends, people I have never even met. I have reconnected with old friends. Friends that I always enjoyed having but never really stayed in touch with. I have received messages from other parents telling me wonderful things about their children, and sending me good blessings. All awesome things! I have just one word. Heartwarming. Ok, two words. Comforting. It's reassuring to me that we're not alone. That other families have travelled this road before, and found it to be their best trip ever. I don't want to go to Italy anyway. I'd much rather stay in Holland. 

Since starting my page a couple of days ago, I have over 1250 followers. Which means 1200 of you believe, accept and have respect for anyone with special needs. That means you are AMAZING! And together we can make this world a better place for our children:)  God bless ❤

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Looks pretty beautiful to me!

Happy World Down syndrome Day:)

Today is World Down syndrome Day! 3:21!

In celebration of today my family and friends showed their love and support by wearing funky socks! Why funky socks, you ask? Because they're fun! They're cool and they're unique! Just like those who have Down syndrome:) A sock is a sock...it doesn't matter if it is different or doesn't match. It is still a sock. 

We also had a little party. There was cake:). And my beautiful and talented niece baked these amazing chocolate cherry cupcakes! Yum. 

In recognition of this wonderful day I have been brainstorming on how to make a difference in how the world sees individuals with Down syndrome. It seems a bit overwhelming. How can I reach all those people? Then I figured it out. Social media. So I started following links for DS on Facebook. It was so heartwarming to see all the different posts and photos of beautiful children, I decided to start my own Facebook page for Lennox. https://www.facebook.com/daysfilledwithsunshine I have to admit, it's exciting watching the "likes" increase. But it's also kind of disheartening at the same time. I guess I was hoping for faster recognition. The page is designed to celebrate the beauty of Down syndrome and to promote awareness and acceptance. So that's where I guess I need to lighten up a bit. I can't change the world overnight. I know it will take time. We have already opened many eyes by just being ourselves. It warms my heart with all the love, support and acceptance we have received from everyone. Thank you all <3 You too, are spreading the love without even knowing it.

To continue in spreading the word..if any of you are on Facebook, please like my page. Share it with your friends. Help change the world. Share the love:). Lennox thanks you. I thank you!

Happy World Down syndrome day! We love you Lennox <3