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!

       

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....

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! 

Brother hugs

I had to write about this because I never want to forget how pure the love is between Matthew and Luke. 

This morning Matthew was eating his breakfast of Cheerios and home canned peaches (in front of the tv because my back hurt too bad to sit at the kitchen table with him).  Luke was sitting in my lap. As Matthew ate, he shoved a peach in his mouth, chewed it up real fast and ran towards me. He jumped up in the recliner with Luke and I and proceeded to  give Luke a huge bear hug while saying, "Love you brother." In that moment, Luke (who loves to give hugs) pushed his arms around his brother's head, twisted his fingers around Matthew's hair and pulled him in close and planted wide-open-mouthed, slobbery kisses all over Matthew's cheek. Matthew squealed and hugged him tighter. I sat and stared at the little boys in my lap and soaked up the moment. :)

As a mom, nothing fills my heart more than the love that is developing between the two of them. 

What is a "Celebutard"?

Being the parent to a child with a disability is tough stuff on many levels, however the complexity in that statement comes in that it's made even more wonderful because of the success that comes along with overcoming the associated obstacles.

Last week, a perfect example presented itself that I feel compelled to share with you all. I've mentioned before that I'm a member of a secret group on Facebook for mothers of children born in 2012 / 2013 with Down syndrome... we loving call ourselves "The Rockin Moms" because our kids are all "Rockin an Extra Chromosome" and awesomely enough, there are nearly 150 "Rockin Moms" in our group. We live all over the United States and even have some members who live in Australia. It's an odd thing, but even though I've never met 99.9% of these women in real life, I feel overwhelming connected to them as we share many of the same challenges as mothers to babies with DS. Our group has been a lifeline for me when I've felt the most lost and I'm constantly amazed with the kind of things we talk about... real stuff. Feelings - good, bad, positive, dark, uplifting... you name it! We pray for one another and each others' children, we share medical issues, developmental / therapy ideas and cheer each other on when life is going good! Because of our collective experiences with Down syndrome, we have come together to draft a pretty wonderful book that compiles our personal stories about receiving a prenatal diagnosis of Down syndrome for our children or the surprise of meeting the diagnosis of Down syndrome either immediately or within a few hours of giving birth to our babies. Our goal in sharing our stories is in the hope that we can comfort other familes who find themselves in similar circumstances. (We are just beginning the process with publishers however, so it will be awhile before I have more news on this topic :). The "Rockin Moms" also have this forceful desire to make the world, society, culture, etc. a better place for our children and others with disabilities.

Keeping the above context in mind, last week one of the moms posted in comment in our group about an online shopping experience with Sephora. She shared that she discovered a lipstick marketed through Sephora and produced by Kat Von D named "Celebutard".

What is a "Celebutard" you might ask? Urban Dictionary offers this definition: Celebutard: Conflation of the words "celebutante" (itself a conflation of the words "celebrity" and "débutante") and "retard".

Wiktionary says: Celebutard (plural celebutards) 1.(informal, pejorative, offensive, slang) A celebrity viewed as unintelligent; especially a celebrity who behaves badly in public.

I have also discovered that there is actually a book entitled, Celebutard written by Andrea Peyser.

I am at a loss with why our society thinks it's okay to use the word (or any combination of words including) "retard" to describe something or someone seen as stupid or dumb. The connection between the diagnosis of Down syndrome and the outdated term of "mentally retarded" is undeniable. The fact that people think it's okay to talk about "retards" in the same vein as those who are stupid and dumb is really offensive to me. The "R" word as I like to refer to it (as the real "R" word makes me cringe) has become so common in our society that I'm seriously disgusted. A co-worker is constantly referring to his dog as retarded and others who have made similar comments. I'm sad that others don't see the hurt that comes along with talking down towards others.

I'm also discouraged with our society, one that thinks its okay to write books about celebutards and decorate their lipsticks with the made up word. How does that sort of thing get past authors, editors, marketing teams, executives, retailers? People who are educated? Undoubtedly one (or more) of them have family members effected by Down syndrome? How does this happen, don't their hearts and their brains work together?

This is where being the parent to a child with a disability has been really tough for me. I can deal with Luke's medical issues, I can learn his therapies, I can revel in his smiles and kisses and I can feel lots of joy when I see he and his brother interact. It's much harder to understand the kind of world my son has been born into. While our wonderful, rural little farming community has welcomed our family with outstretched arms and have extended a very special love towards Luke and the rest of us, it's the fact that there are people out there (apparently more than I realized until recently) who are okay with disrespecting those with disabilities... to the point that they are exploiting outdated medical terms used to describe them for their own personal wealth and / or twisted humor. Enter "The Rockin Moms"... we have joined forces to speak out on behalf of our children and fight what feels like a losing battle. If you agree with our mission to "End The Word", please speak up!

Here are some places you can comment with your thoughts:

Sephora's Facebook Page

Sephora on Twitter

Kat Von D's Facebook Page for her Makeup Line

Kat Von D on Twitter