“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Friday, August 16, 2013

Another Birthday.....

I wake up every year on August 17th at precisely 1:37 am. I lie awake in the darkness and allow the sepia colored memories of that moment and the ones that followed to wash over me in waves. I miss her. Like a physical ache that never goes away.
For 18 years, I have clung to those too short moments, every second of those precious days etched perfectly in my heart. The smell of her head, the weight of her tiny body, the feel of her fist wrapped around my finger, her tiny cradle cap tucked away in a baby book bursting at the seams with snapshots of her life without me. These are all I have of her.
Its hard for me to reconcile those memories with the beautiful woman I clung to last summer. Its hard for me to imagine that 18 years have passed by in the blink of an eye and that the birthday I have longed for for so many years has finally arrived.
I've changed so much from that girl I used to be then. So much has happened. So many days have passed without her. I grew up, as I watched her grow up from afar.
The passing years have added a little gray to my hair. They've added a few more pounds, a few more kids, a few more responsibilities. But those years without her have also shown me what I couldn't see in the beginning...that I was strong enough to wait.
She is always with me.....in the quiet hours of early morning, in the sparkle of her sister's smile, in the laughter, in the love we share...all these things exist because she does. All of these exist because she burns like a beacon in my heart, pushing me to let my light shine brighter, to dream bigger, to go further, to love deeper. And still, I miss her. With every beat of my heart.
I am me because of her. 

 I know full well how hard it can be to have a major part of your heart walking around in the world without you. But a mother's love is never ending. So I wait.
Happy birthday, angel of mine. I wish that I was able to wrap you in my arms this day. I wish that I was able to wake you in those quiet moments of morning at the moment you were born, simply to tell you that I love you and be the first to wish you a wonderful day. I miss you. Always.

All my love to you. May your day be every bit as beautiful and special as you are. Wish you were here...... 

Tuesday, August 6, 2013

Gene Therapy and My Views on the Raging Debate.....

I try very hard to avoid the hot button topics here most of the time. After all, that doesn't necessarily fit in with the mission of this blog, which is really just to show what life as the parent of a child with Down syndrome is like and to occasionally work through my own thoughts and feelings, which I do best by writing them down.....However, there is a large controversy brewing within the Down syndrome community and since this subject is one that I have a lot of thoughts on, I thought I would put my two cents in.
Scientists at the University of Massachusetts Medical School have found a way to essentially "shut off" the extra 21st chromosome in petri dishes. I have friends within our Ds family who sit solidly on one side or the other, and while that's perfectly fine and dandy, I have watched in disappointment the same community who work so hard to combat ignorance and injustice fight amongst themselves and in some cases, treat each other with horrible disrespect. It saddens me. The entire thing saddens me.
I have my own opinions on the matter, of course, which I'll get to in due time. But I also have grave concerns about the motivations, long term effects, and consequences which come along with essentially "playing God" in a laboratory......

1) What are the long term effects that could come with negating the "positive effects" of a person's genetic makeup? I've heard the arguments about the stereotypes of people with Down syndrome being extra loving, extra happy, etc etc. I understand that with that extra chromosome comes higher chances of some pretty nasty stuff....delayed development,early death, respiratory , GI, and cardiac defects, leukemia, and early onset Alzheimer's. I understand the urge to eliminate the increased risks for these things. I truly do. Especially considering that these are issues that we may have to face at sometime in our future (and are already dealing with cardiac defects). Yet I think that we also can not forget that there are some positives as well, including a greatly decreased risk of other types of cancer, a higher remission rate in kids with Ds who have fought leukemia, and a decreased risk of complications that come from diabetes and high blood pressure. These are things that aren't fully understood but which are directly linked to the extra chromosome and which I feel strongly were they studied could lead to breakthroughs in the treatment of the general population who face these problems. So my question is this: Instead of shutting off the extra chromosome all together, why aren't we pushing as a community to put those researchers to work eliminating the "side effects" rather than the syndrome itself?

2) What are the consequences of messing with the genetic makeup of an individual? How much of a person's personality is formed from an early age by the challenges they face? How much effect does Ds actually have on the individual characteristics our kids have? Will shutting off the extra chromosome in utero eliminate the physical characteristics that go hand in hand with Ds? Essentially, I wonder who our kids would be without that little extra....would they be the same or would they be profoundly different children? I feel strongly that we are all shaped by our experiences from an early age. I know that my parents' divorce when I was 6 years old was a contributing factor to the person I am today, as were all the other challenges I have faced in my almost 36 years on Earth. I am not the same person with the exact same beliefs and personality traits that I had even 3 years ago. Yes, essentially there is some part of me that is the same as that little 6 year old girl I used to be, formed by my own genetic makeup. However, so many parts of me are profoundly different, which makes me sincerely wonder who my daughter would be even now had she not faced open heart surgery, had she not had to fight so hard for her life, and had she not had to work so hard to meet developmental milestones. Would she be the same girl? I really don't know.....

3) The question that bothers me the most. The one that is the crux of my fears about this potential therapy....What is truly the motivation behind this research in the first place? Is it truly an attempt to help kids with Down syndrome or is it simply one more way to eliminate it? I fear its end result is elimination. And that's the saddest part for me. I understand a parent's motivation to support and seek out this therapy for their child when it becomes available....I understand that we all do what we feel is best for our kids....and I understand fully the wish that, as a parent, you never had to watch your child struggle. But I know parents who are appalled by the high abortion rates for fetuses diagnosed prenatally with Ds who will do whatever is in their power to turn that extra chromosome off completely. And I think that quite honestly, had something like this been available when I was pregnant with Liddy, before we fully understood what Down syndrome would mean in our lives, we, who were so solidly against having an abortion regardless, would have probably jumped on the chance to never find out what it would mean for us. And really, just as with an ever increasing abortion rate, Down syndrome won't be eliminated. Kids with Down syndrome will. In my opinion, that's a travesty in itself.....

As for my opinion, I'm sure that it's already at least partially clear at this point. Maybe I'll be considered selfish, maybe there will be some who believe that I am a bad parent for my thoughts, for my refusal to change my daughter. I really don't care what the opinions of any one else are about me...the only ones that matter are those of my family and we all love Liddy exactly as she is  (that's not to say that parents who would choose the opposite love their kids any less btw...so no hate mail please!).

Being Liddy's mom has changed me. And quite honestly, I could have never imagined being so head over heels in love with every bit of someone as I am with her. She is an ever changing kaleidoscope of personality...one minute the sweetest girl you've ever seen, the next a raging wild cat....one second good as gold, the next full of every bit of two year old naughtiness she can muster. The most amazing thing about her is that two and a half years later, I am every bit as fascinated by her as I was the first day she was placed in my arms. She is smart, she is hysterically funny, she is the hardest, most determined little worker I know. And while on one hand, I would love for her to never have to struggle to overcome the challenges Down syndrome has brought to her life, on the other, I wonder if she'd still be the same child I love so much if she had never had to face any of them.

I know for a fact that I would desperately miss her sparkly almond shaped eyes and her tiny crooked pinkies. I simply can't imagine how horrible it would be to look at the face of the beautiful girl I love so much and know that some piece of her, some vital part that makes her in any way the girl she is, is gone.
Is she who she is because she has Down syndrome or is she who she is because that's just who she would be irregardless? I really can't say for sure. But what I can say without a single qualm is that I never want to find out.
She isn't Down syndrome. She's so much more than a useless label, so much more than a stereotypical ideal. But in my eyes, Down syndrome IS a part of who she is and that is someone I love with every ounce of my being.

Would I change her if I could? No way. Our lives are richer because she exists, exactly as she is, extra chromosome and all.......

Saturday, August 3, 2013

Confessions of An Exhausted Mommy

I've always been so proud of myself for being able to juggle all the demands of motherhood gracefully. Even when I thought I was dropping balls left and right, it appeared to the rest of the world that I had it all together. There were times that the rest of the world saw my indecision, my doubts, my obsessive worries...but even then, as I stood on the brink of falling to pieces, I always managed to come out smelling like a rose.
In this world of social media, its easy to appear to be Super Mom. We carefully choose the image that we put out into the world....an image that paints us in the best possible light and shows our kids as adorable little imps that we, of course, can't imagine our lives without. Motherhood through the lens we show the world is sunshine and rainbows most of the time.
Most of it, I'd venture to say, is pure bullshit.
Not to say that I don't adore my kids. I do. I'm mostly madly in love with them all. But I'm just gonna say it....I AM EXHAUSTED. I am overwhelmed at least 3 days out of 7 in a good week. And at least 10 times a day I dream of an icy cold pina colada sipped in a beach chair, toes in the sand, and no kids in sight. 
I've been a mom for a long time. I assumed that a new baby would be as easy as my others were and that all the stressfulness would ease up after we all settled into a new routine. Um. Wrong. There is no routine, other than ceaseless diaper changes, laundry, and feedings. Levi has been home for four weeks now and Liddy just decided that she might like him (although I asked her yesterday if she loved her brother, to which she promptly replied "No"). At least once a day, she cries when he cries (which by the way seems like alllll the time). And I truly don't understand how it is possible that I have a newborn who refuses to sleep...Aren't newborns supposed to sleep all the time? Liddy has morphed into an incredibly adorable toddler seemingly overnight, with every bit of the typical toddler naughtiness, and sees the new interloper as an opportunity to create mass chaos while the parental units are otherwise occupied.And while I totally pride myself on creating totally beautiful babies, now I see clearly that they use their cuteness as a way to sucker sappy mommies into getting out of bed on too little sleep and wading through the madness that is motherhood again tomorrow.
I'm realizing, unwillingly, that I am not Super Mom. I'm just a mom...with two kids in diapers, with a baby who is probably slightly colicky, and an almost constantly raging headache.
*sigh* This isn't necessarily what I signed up for.
I turned into an old lady overnight. More gray hair than red. Big bags under my eyes. High BP. 
Mad props from me to all you moms who do this by yourself or who have lots more than 2 little ones......I feel like I'm losing my mind at least 90% of the time. ;)

But they are cute, I'll give them that.......

If only I saw less of this face:

and more of this one:

Oh well. It won't be this crazy forever. And if it will, can you please just lie and say "Sure. It'll get easier..." Thanks.
Sleep Deprived in Indiana