champion

Nolan...what's in a name? well, in his name, everything...it means champion...boy is he ever!

You know it's funny how life works. How when in your deepest moments of loss, sadness and despair. Something happens. Something very interesting happens. All the time you are holding onto whatever it may be, maybe a man that you should have let go of years ago...maybe a job that you thought was the best thing to happen to you, maybe money that you can't seem to make enough of...whatever it may be you find yourself realizing that you are squeezing the life out of that worry. You keep holding on tight to the last fiber of that dream, hope, wish and you know what, when you finally hit the place of letting it go, you know what happens...you do. And with that comes a space, a special place now available for something new....oh the possibilities.

Well, for some reason, in my life, I forget this amazingly true phenomenon and only until after I go through the very painful, lengthy process do I go OH YEAH, this is what happens when you let go of something you are white knuckling holding onto....it is so cool, rewarding and fun!

Well, I was white knuckling a lot this last year. Holding onto a dream of a boy I had wanted. Holding onto a family I had pictured. Holding onto ANYTHING I could, maybe he'll be different, the first boy with down syndrome to be a rocket scientist...um...yep, I actually dream THAT big! Well, these last few weeks, without me even realizing it, I was depressed, really more than that, angry and disappointed in myself that I wasn't at a better place and "holding" it together better a year into this journey. But, I had to put it in writing, my disappointment in my lack of strength during this time. And let.it.go. And, I did, I said, yep, I am not where I want to be....so what.

ahhhh....then it happened. I was. I am. right.where.I.want.to.be.

Nolan is amazing. So amazing. He gave it to me good. He decided why mess with easy babbling, let's go to the hard stuff, no words ever babbled, but BAM, he did it....MAMAMAMAMA! It melts my heart listening to it. I told my husband it is comparable to the first time you ever hear a baby's heart beating inside of you, the best sound I had ever heard until this point. His little mamamama, over and over....yep that trumped it. My champion said to me, "oh silly mama, don't give up hope, stop holding on so tight and just relax. I am here and I will succeed. You will know me and love me, just as I am."

He is right. Oh so right. Teaching me more in a year, than I have learned my whole entire life. Interesting really. How you learn so much from the simplest moments, the tiniest things that are larger than life really, that pull you up and out of a place where you have been so stagnate.

So, guess what, mama has hope. A lot of it.

One year

Well...here we are a year later to the date of finding out our life was about to change. In a much larger, hard to comprehend, impossible to know what to feel, think...plan...all so much of a blur and at the same time, so easy to touch it, feel it, remember it. We didn't know a year ago what this year had in store and I honestly wish I could say that it has been easier, more pretty than it really has. But it hasn't. The easy part, well that is loving and holding and smelling the most amazingly, precious, adorable, beautiful baby boy in the world...it is heaven. It is everything you want, imagine and plan for when you have and desire a baby. It truly is. The love is the same, exactly the same, it fills every pore of your being and overflows into your family, each loving and cherishing him just as they should.

What is different? What is challenging...well....when you bring a diagnosis as major as Down Syndrome, there is a lot to digest in the beginning...heart issues...nope....feeding problems...minor....ears needing tubes to help drain wax...check. But, really it's a lot of appointments, a lot of planning as to how to proceed with his future. But then...just then...when you are settling into a diagnosis as large and encompassing as DS, we got hit. A WHAMMY of a shock. Infantile Spasms. Epilepsy. A label he will endure for the remainder of his life. It doesn't go away, you don't have epilepsy and then next year not...it doesn't come and visit and then leave. So, seizures, that was a pill, I am still struggling to swallow. It's been 2 months since we found out, our son wasn't simply "struggling" with delays of DS, but seizures. Constantly striking his brain 100 times a day. Wow. Wow...WOW. It's honestly still so hard to wrap my brain around. He was on intense steroids. It was awful. Really really awful. But...there was so much good, strength and hope that came from that treatment, he has been seizure free for 6 weeks now. AMAZING. He now smiles ALL. THE. TIME. It is such a gift, a gift of epic proportions. He giggles, he chats, endlessly. It all seems so rosy. And then it hits me. Hits me what seizures really did to my life and our life.

They really robbed my hope for his future. I know I know, I can't let them do that. I need to keep on, keep staying strong, long for more. But, wow, it is a lot harder than I knew. Still not close to sitting up. One year later and still not sitting up. Doesn't really do much of anything besides his social improvement. And it just strikes you. Like, HELLO, you can't keep dreaming that big anymore? You can't keep lying to yourself. At some point you have to except where he is and what he may not get to experience in the future. I hope this goes away soon. But right now, on the year anniversary it stings more than normal, I just really really really thought, I would look back on this day and think, "wow, what was I so worried about?" and NOW...now...I just don't say that..and that disappoints me personally, that I can't be stronger about the situation and have well...more hope.

Graduation