The End of 2013

Tonight I sit here at the computer, all of my kids (except one) under my roof, and I think how very blessed I am. Life here is quite a bit like living in a crazy zoo and while our life is far from perfect (or even sane), I have to say that I love the crazy (although I do have my moments of reminiscing about a quiet, clean, yummy smelling house haha). I find that despite my grumblings I wouldn't trade this life for the other quieter, cleaner, and much saner one for anything in the world.

Amid my review of New Year's Eves past, I can't help but stop on one not so long ago...the last New Year's before life irrevocably changed for us.

Three years ago, we spent part of New Year's eve in the labor and delivery department of our local hospital, contracting, hoping against hope for the first baby of 2011. It was not to be. We got sent home to wait for our induction date three days later. Bummer. I can't help but remember that woman I used to be, so impatient, yet so truly afraid of the unknowns yet to come. I've come a long way from then.....and I have changed so much that the me of today barely recognizes that version of myself. And I can hardly believe the twists and turns my life has taken since the cold, snowy January day that she brought herself into my world.

2013 has been a wild one, with every bit of the roller coaster like ups and downs that we rode our way through in 2011. Soaring highs, crashing lows. But as I watch my daughter play, as I hear her sing, as I hug my too tall son and he rests his chin on the top of my head, as I watch the formerly scrawny, now chubby, baby sit on his own, smiling and laughing, I know that without a doubt, this year has been a year of immense blessings, of being greatly favored by God. I'm beyond grateful...and extremely humbled. So here you go...our year in review.....

Happy New Year from our family to yours! May you be every bit as blessed in the coming year as we have been, and continue to be. 

XOXOXOXO, 

Heidi

A Chance Encounter

Dear Sweet Mama,

As I was rushing through the grocery store today, harried, strapped for time, two babies in tow, I saw you pass by us more than once. I saw you staring at our cart out of the corner of my eye. And never thought a thing about it as I sped through the store, stacking groceries haphazardly around my three month old in the cart, trying to escape the store before one or the other of the under 3 crowd had a melt down. 

As I swung around a corner (just keep moving and the baby won't cry!), I heard a sweet voice say, "May I look at your baby?" "Sure," I replied, without thinking, moving groceries and myself so that you could catch a view of Levi in the overladen cart. "Oh no," you said," I meant your OTHER baby. I didn't even know he was in the cart" and you smiled, already making your way to my daughter's side. I felt myself tense up because my child, as sparkling as a butterfly from a distance is often not so sweet and generous when her space is invaded. 

However, you bent down to her level and gently asked her her name....to which she replied in Liddy speak "Diddy". You smiled and asked how old she was....(to which she replied 3, which might be a slight stretch!) You leaned forward, kissed her forehead, and then said to me, "Mine just turned 57." Suddenly, this time crunched mama, who had spent the last 20 minutes tearing through the aisles, felt like time stopped while I stood and chatted with you. You told me that your son has Alzheimers and when I apologized, you said, "It is what it is and I had 50 years of the greatest blessing before time started to take him away." I had a lump in my throat as I watched you continue to speak to Liddy, not as a stranger, but in a voice overflowing with love for a little girl who you don't know anything about except that she shares the same extra chromosome as your son. 

I watched, blinking back tears, as my precious girl reached up and gave you a hug, signing "I love you." And as you started to walk away, you reached up to the collar of your sweater and unpinned the angel you were wearing, gently pinning it to Liddy's t shirt. "An angel needs a guardian angel" you said as you walked away. 

I want to say thank you. Thank you for stepping in at exactly the right moment and reminding me that nothing is more important than right now and that these moments with my babies, as stressful as they might seem sometimes, are fleeting. Thank you for pouring your love out to my child, for talking TO her, not about her, for showing genuine appreciation for who she is. Thank you for your honesty, for not sugar coating your reality, but remaining serene about what I know must be excruciatingly painful to watch as a mother. Thank you for giving me a glimpse of the type of mother I want to be.....the type of mentor I aspire to be to others just starting out on this path some day. But most of all, thank you for taking the time to step up and say hello. I have had a few parents stop me while Liddy and I are out and about but this encounter with you truly touched my heart deeply. 

I may never see you again but the memories of that brief conversation will stay with me for a long, long time. 

We are family, you and I. Please know that you and your precious son are in my thoughts and prayers tonight....and that pin you gave my baby girl will be a treasure to us always.

Love,

Heidi

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...... 

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.......

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.

Signed,

Sleep Deprived in Indiana

What Faith Can Do.....

Another year has passed by. It seems like time rolls on with all of the finesse of a freight train the older I get. And here we once again find ourselves, on the eve of Liddy's re-birthday. The day which changed us all and which made every moment of the last 730 days possible. The anniversary of facing our worst fears, of finding faith and strength amidst a thudding heart and endless tears, the day that our tiny brokenhearted baby girl was returned to us with a fully functioning, newly rebuilt ticker in her fragile little chest.

6 months on pins and needles, waiting the day that she would either get sick or surgery would come. 7 hours in surgery. 14 days spent in the ICU. A collapsed lung. A second surgery to implant a pacemaker. 2 days on the heart floor.

Countless sleepless nights. Enough tears to fill the ocean. A million prayers. Hours spent beside the giant crib which contained my still, quiet, heart stoppingly tiny baby girl amid the endless beeping and humming of the ICU. 

 

Well worth every single second.

A ransom I would pay a thousand times over simply to be given the chance to continue being able to receive hugs and kisses and smiles, to hear her laughter, and be witness to the sassy head shakes that accompany my princess' exasperated "Oh mama."

I simply can't imagine a world without her in it.

Two years later. I am every bit as grateful as I was in those first faltering days afterwards. Possibly more so because now I have had another 730 days to REALLY know her.....and grow to love her even more. 

Thank you to every surgeon, every doctor, every nurse that made it possible for me to continue falling in love with my Bug with each passing day. Seeing this face...

is a blessing I will never take for granted.

Happy Heart Day, precious Liddy. Mama loves you so much more than you will ever know......

"Make broken hearts brand new...That's what faith can do"~Kutless

Life's Littlest Surprises.....

I sincerely thought that Amanda and Caleb would be my only kids. One I raised myself and one who was raised by another set of parents. I never really considered having more...until I met John.

John always wanted at least one more baby. In fact, in our pre-marriage discussions about it, I broke down more than once and told him to find someone else because due to my "female problems" I was never going to be able to give him one. We got married after a whole lot of assurance on his part that he loved me and wanted to marry me...not the possibility of more kids (what a man by the way!).

When I found out I was pregnant with Liddy, I felt as if I had been kissed by the angels themselves. Long have I called her my miracle baby and I sincerely thought she was the last......

Surprise!

Seems that life ultimately had other plans.

These littles. Oh my. They have taken us on quite the roller coaster ride already. 2 unexpected babies within three years. 2 NICU stays. But I have to say that I couldn't ask for two more perfect babies....and I couldn't imagine that I could love either a single smidgeon more than I have since I have first gazed on their faces.....

 

Another NICU stay was my worst fear. I fully admit it. I whined. I complained. I talked about kicking Levi out early. But in reality, I would have rather he stayed in, making me miserable, for at least a couple more weeks. I would have rather not have been forced to give birth because the options for me were horrible. I would have rather he came when HE chose to, not when we forced him. And I could have gladly lived the rest of my life without ever seeing another of my babies, especially one so tiny and defenseless, breathing through a ventilator.

Talk about putting your priorities in order FAST. Was I sad that another open ended NICU stay was in our future? Yes. I don't think that any mother wouldn't be sad to be leaving the hospital without her baby tucked safely in the car beside her. But the alternative...unthinkable. 

Even after a relatively short time being Liddy's mama and a blip in time being Levi's, I simply can't imagine life without either of them......

These itty bitty kids complete our family in ways I never imagined. I thought we were complete after Liddy....little did I know how much we were missing a Levi as well.

I'm proud to say that tiny Peanut is every bit as much of a fighter as his sister. He's off the vent...and just one week after it was placed, he's breathing completely on his own, without even a whiff of oxygen. He started eating bottles yesterday, and does it like he's been a bottle muncher all along. He's gaining weight. And even though going home hasn't been brought into the discussion with the neonates yet, I'm hopeful that he'll be here with us where he truly belongs very, very soon.

I don't know quite yet how Liddy is going to take that....but I'm 100% positive that one of these days, these two are going to be best buddies and John and I are in big trouble. ;)

So thankful for all of your kind words and many prayers. They're obviously working.