Happy Tuesday<3

Just a quick post tonight.

We have been very busy working on meeting milestones this week. Lennox tries very hard and doesn't get frustrated when he's had enough. He just starts looking tuckered out, so then we stop. It's a slow progression. But he's getting there though. Still not rolling, but the boy can nearly sit on his own. Go figure!

We had an "assessment" by our Child Development Specialist today. She is very good and it was done through play. So Lennox got to impress Shirley first with his infectious smile and charming personality and then he shared his "skills". Happy to report that he is doing everything he is supposed to be. Meaning bringing arms to midline over his chest while laying down. Reaching for and grasping toys and sometimes bringing them to his mouth. His little tongue seems to always be out so he gets a good taste of everything he touches:) You can tell he's concentrating very hard. Go Lennox!

Water therapy is going well and he continues to love it. Well at least I think he loves it. He doesn't protest when he's there. But again, he doesn't really complain about much. He's a "go with the flow" kinda guy. So we make a pretty good team. I admit that I like to sometimes be of a bit of a "No plan Fran"! Lennox has a little buddy at WT, the same age...and by he has a buddy I mean, I have a buddy(his mom) and the boys are to thank for that:) I can see the two of them growing up to be good friends! Go Eddie and Lenny<3

They are so darn cute, it kills me. They noticed each other for the first time the other day and their reactions were priceless. We were too busy celebrating them that we never noticed the class was waiting on us... Awkward! But it was worth it.

So in a nutshell, things are good. Crazy, but good! 

PS. Lennox will be featured in an online Magazine this month, Special Miracles. Stay tuned:)

Super Mom

Being a new mom to a baby with special needs hasn't been quite what I expected. Honestly, I'm not sure what I was expecting. They really should have a book titled "What to expect when you're expecting a child with Down syndrome (lightbulb). After all my research throughout the pregnancy, I guess I was expecting to get my cape at the hospital...

                              

I have been a mother for the past 19.5 years, so I feel I may be a bit of a seasoned veteran(shush). But I am now a mother of a child with more specialized needs. As far as babies go, their needs are simple ones..."love me, cuddle me, feed me and change me." I could spend all day playing with Lennox. It's no wonder I don't really accomplish much throughout the day. I admit that somedays I feel like I have done absolutely NADA. I could use a housekeeper, a cook, a secretary and a professional dog walker. I admit I CAN'T DO IT ALL anymore. And I am ok with admitting that I am not a superhero. I am not a "supermom". I am a mother just trying to keep it all together. 

Children are children. They need their mommies. The needs may be similar and are usually met in similar fashion. But sometimes they need to met all at the same time and then the quality of delivery takes a hit. But alas, I am still "Mom to the rescue"!  I sleep in intervals and with one ear always open. I eat whatever I can, whenever I can. I am always wearing the scent of "Eau du Mama". And quiet time is only when the wee ones are in bed. It sometimes seems like a thankless job. And sometimes I feel like I am failing more than "winning". But, I know that no one can kiss a boo boo, or wipe the tears from a broken heart better than a mom. We make the best sandwiches and give the best hugs. I have come to realize that it doesn't take a special kind of person to be a special kind of parent. I am not a "special" parent because I have a baby with special needs. I am special because I love my kids more than I love myself and I am doing my very best. Aren't we all?

I am still learning about how to raise a child with Down syndrome. So far, it has been no different than raising my "typical" children. Lennox's needs are the same but sometimes just take a little more time.  The demands are the same. They just sometimes need to be met a little more often. Somedays I sleep a little less, somedays I sleep a little more. I find myself spending less time stressing, and more time enjoying the the little things in life. More time celebrating the milestones rather than rushing them. Life can be hectic with 5 kids. I didn't expect it not to be. It sometimes can be a bit of a juggling act between appointments, therapy sessions, and life. I am busy! But aren't we all? 

Life is good. It's actually better than good. It is great! Lennox brings a certain light to our lives that we never knew we needed. I feel that I am a different kind of mother than what I once was. I feel my purpose runs a little deeper with Lennox. I am working hard for him. I feel I need to ensure that he will have a full, happy life and that he will be as loved and accepted by the world as he is at home. Looking back, I never really put so much thought into how to "raise" my babies. I just knew I wanted them to feel loved, happy and to be respectful. It is the same with Lennox, only now there is the added goal of inclusion. I am so determined because I love him so much. He gives me the strength to be that "special" kind of parent I want to be. I only want what's best for him and for the rest of my gang. I am a mom on a mission...to be a SUPER mom. Aren't we all? Happy Mother's day <3

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.