30 December 2013

I wish I could be a child again...

I'm sorry I haven't written much lately.  I do have plans to get back online and update on our lives again soon!  As I write, both boys are napping in their cribs and I've just taken a break from a new book I'm reading, "The Year My Son And I Were Born: A Story of Down Syndrome, Motherhood and Self Discovery" by Kathryn Soper.  There was a line that struck me and I needed to write... so here I am.

 "I watched them go, wishing I could be a child again, instead of a mother."  

Soper was referencing how she felt as her 6 oldest children left the hospital after meeting their new baby brother, Thomas, who was diagnosed with Down syndrome at birth the day prior.  This struck me because I recall feeling the exact same way, wishing someone could take the reigns and live my life for me and I could in turn be reduced to the innocent days of Kool-Aid and cartoons.  I wanted to run away from my life and my own reality.  I didn't want to deal with the hardships that everyone told me were in store for my future.  I felt that way for a long time too during the last half of my pregnancy, when we knew that Luke would be born with DS.  It's quite amazing the extremes that I've felt through this experience... the lows have been so very deep and dark and almost nonhuman and the highs have been completely the opposite... I've had an uncountable number of moments when I've felt like I was soaring high above the clouds, in on a secret that was greater than the greatest secret imaginable, like I'd found heaven on earth.  I don't know how else to explain it.  It confuses me actually, how I could have been so terrified of our impending life with Luke, especially now that I am certain of the love and joy he's brought to my life.  Why has our society created that?  The divide is too deep and too wide.  All life is precious... why did I question the gift that God had planned for my life?  I have so many questions in retrospect on why I felt so destitute at the time.  I feel guilty for the thoughts that I had back then.

Yesterday, Dustin's Grandpa Taylor told me that he was proud of Dustin and I because "we wanted this child".  He told me how proud he was of Matthew and Luke because they were both beautiful and strong in their own ways.  In all of his elderly, Grandfather-ly wisdom, he was right.  They are beautiful and strong and we have so much to be proud of.  It meant a lot to me that he said those words, in his generation, individuals with Down syndrome hardly existed... at least not in the throws of society.  They were thought so much less of that they were institutionalized.  They didn't have contact with their families... essentially, they were let go and forgotten.  I've never asked he or Dustin's grandma (or any of our grandparents for that matter) if they ever knew someone with DS so I'm not sure if any of them ever had personal experiences.  Regardless, knowing that this population wasn't readily accepted by their generation has always left me quietly wondering how they felt about Luke being a part of our family.  While I probably shouldn't have ever questioned this either... it's not hard for doubts to find their way in through the teeniest cracks and it just felt good to know that he is accepted fully for all that he is by those close to us. 

While I'm sure there will be days ahead for me that I will revert to wishing I was a child again, for now I feel so blessed for the role I play to two of the sweetest and most loving little boys in the entire world.  I couldn't imagine my life today if I weren't a mother!

06 December 2013

Matthew used the potty

Matthew instigated using the potty tonight and went #1!

Admittedly, I really wasn't too keen on the prospect of him being potty trained and aside from buying him a potty, I have all but ignored the issue with him other than asking him from time to time if he wanted to try to use the potty.  We use cloth diapers and I've already made the investment, I don't have diapering expenses every month. The biggest thing though is that I have no desire to take he and Luke into a public restroom all on my own (if I'm by myself, say like grocery shopping or something...). Luke still isn't standing on his own or really bearing weight on his legs mych.  The challenge of holding Luke while helping Matthew and trying to keep him from touching everything is scary to me. And then there is trying to get him up to wash his hands while holding a wobbly, low muscle toned Luke. It all feels overwhelming to me.

And what about the bags? A purse? A diaper bag! What will I do with those during all this?

Regardless, Matthew decided he's ready to give it a try, so here we go! Matthew is 2 years and 4 months old and I'm so proud of his initative! I love that he just caught on and did it without us having to prompt him! I've been told that when he was ready that he would let us know, this time, all that advice was spot on!

I've always told myself that I'd never do this... But I couldn't help myself! Here is the proof of his first success on the potty!


04 December 2013

Matthew "driving" daddy's truck

This kid loves to "drive"!!

Clapping, waving and standing

So many milestones! Luke started consistently clapping in response to being asked to clap or when he's excited this week! He's also now waving hi and bye pretty consistently! Also tonight during therapy, our therapist took a cushion off the couch and placed one of Luke's favorite cause and effect toys (this tower thing that you load five balls onto the top of and then when you press a money, the balls are released one by one to travel down a circular slide where they finally come to rest in the mouths of hills at the bottom. It has these wildly bright led lights and plays some crazy loud songs!) on the couch. She position him standing so he could play with the toy and he actually did it! I've never seen him bear weight for that long, nearly 6 minutes! Granted he was resting his chest and arms on the couch, but hey, we will take it!! Love our hard working little guy so much!!

Sing a little song

I've been a mama to babies for a solid two years and four months. I know that I may still seem a rookie to some, but it feels like I've lived and been through it all in that short time. That said, It's been a while since I've had a first experience, but I had one tonight and it was wonderful!  Tonight I sang one of my babies to sleep... Actually since I'm a terrible singer I really just whispered the lyrics to Jesus Loves Me as I rocked Luke. I couldn't believe he actually fell asleep, usually they just stare at me and grin! It was awesome to watch his eye lids get heavier and heavier and eventually it felt so intimate for me to study his face as he drifted off to sleep. While I watched him teeter between consciousness and sweet dreams, the words Jesus Loves Me stuck in my mind and brought me to tears. I know that I'm not a perfect person. I can think of ways that I fall short every day. Some days I even find that I'm disappointed in myself when I know I've missed the mark on something, wasn't nice enough to someone or didn't give my best self in some way. Regardless of how hard I am on myself, Jesus Loves Me! He loves Matthew and Luke and Dustin and he loves you too! Tonight was awesome for me as I felt this all consuming love towards my youngest as I soaked up his innocence and then realized that for all the love I was feeling in that moment, God loves us more than we can understand....

02 December 2013

A First Birthday Letter to Baby Luke

To my dear-sweet-little-baby-boy:

It won't be long before you'll be too big for mama to call you that.  In just a few short weeks, you'll be one year old.  My, how time flies.  It's so hard for me to think back on this time last year... winding down the last few weeks of my pregnancy, anticipating what you would look like and dreaming of how full my heart would become in the moment that you, a little ball of fury kicking and bumping around in my belly, would enter my life. 

Beginning in that first moment that your little lungs took in air, you've kept us on our toes. In only twelve months, you've racked up a total of 14 days in the hospital, a 6-day NICU stay after birth, one night for observation when you were two weeks old (later we learned that your unusual breathing and chest retractions were due to you having Laryngomalacia) and another 6 days admitted to the hospital for RSV when you were a mere 6 weeks old.  When you were 4 months old, you were admitted again overnight when your cardiologists completed a heart catheterization to evaluate the timing for your upcoming open heart surgery.  You've also had 2 visits to the emergency room.  You've seen 11 specialists, had 85 doctor's appointments and have completed 86 hours of private physical therapy and about 35 hours of physical therapy through Help Me Grow.  Additionally, you've recently started speech therapy and have completed about 5 hours so far this year, for a total of 126 hours of therapy.  You've had a home heath nurse visit you 6 times so far to administer an injection called Synagis to help you from contracting RSV again (and she will continue to see you next year, too).  That same home health nurse visited you 5 additional times this summer to draw your blood as were were monitoring your blood counts to make sure you didn't have a rare blood disorder. 

Aside from sorting out the medical issues you've been evaluated and treated for this year, your mommy has spent additional time taking care of her own emotional well being over the last few months.  I've joined two support groups, one being a more formal group that meets face to face on a monthly basis and the other is an internet based group that is more informal in nature and is truly a free-for-all when it comes to seeking answers for specific questions related to Down syndrome or even more general help with raising a baby.  I've made numerous friends through both of those groups and have even made many friends in our community as I've had a new reason to connect with neighbors and breathe new life into friendships with old acquaintances.  With me being so entrenched in your medical well being, your Daddy has proven his love for us all, day after day, as he has taken full responsibility for getting you and your brother up in the mornings - dressed, bags packed and off to the sitter.  Your Daddy and I have been practicing the best teamwork we've ever experienced over the last few years in just the last 12 months and we are all better for the way we share the load!

While I can recall your medical records to quantify the number of visits we've made for certain issues, it's more difficult for me to quantify the special place you hold in your Mommy's heart.  I have to admit, you had some pretty big shoes to fill joining our family behind your big brother... Matthew is pretty darn awesome and he has been that way from day one!  He stole our hearts so completely that I secretly wondered how I could ever love another the same way... fortunately for us all, God prepared us with hearts that have incredible stretching power and because of Him, I love you both more than I can explain.  If I were forced to quantify, it would be something like "I love you infinity times ten" and even that doesn't really do it justice. 

As I think about your life and my hopes and dreams for you, it's pretty simple.  In fact, it's the same thing I hope and dream for your brother.  I pray that you are able to live a life that makes you feel good. More specifically, I hope you use your special and God-given talents to make a difference in our world.  I pray that you can lay in bed at night and reflect on a productive day's work and feel like your contributions were meaningful.  I pray that you have loyal and caring friends.  I pray that you are able to share your feelings with others, family, friends and maybe even someone special some day.  I pray that you have a passion for life - that you "show up" and through doing so, that you inspire others to be their best selves. 

As we celebrate you this month, not only will we be having a pretty wonderful party, we will also be making donations to three hospitals in your honor.  In fact, your family, friends and neighbors have donated nearly $1000 in cash and gifts for our family to supply the hospital where you spent the first six days of your life with Christmas inspired outfits for the babies who will be spending their 1st Christmas in the hospital, just as you did last year.  The outpouring of love via those donations was so strong, that we exceeded our goal of dressing babies in just one NICU and were able to extend our gift to two additional NICUs for Christmas this year.   

As we close in on the end of 12 months and I reflect on this first year of your life, there is no doubt in my mind that you've already made a profound impact on the world, especially considering that you can't even talk yet! You have great things in store for your life, and I can say with the most honest kind of honesty there is that I couldn't be more proud of who you are.  Thank you to our Father in Heaven for blessing our family with our extra special baby Luke!