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!