Tuesday, April 12, 2011

Philippians 4:13

If a picture is worth a thousand words, I think the pictures in this post are priceless.

I took them a few months ago at the start of Owen's journey crawling -- Since then, I have shared them with my mom, who shared them with her prayer group at work, and it seems they have touched others as well, so I thought I would pass them on to you :)

Never did I imagine the beauty that the images would hold...

At first glance, these pictures brought me mixed emotions...

No one likes to watch anyone struggle, much less a baby, much less their own child. I have to admit, sometimes I get frustrated at the grip Down syndrome has on my baby. I get frustrated that Owen has to struggle so much just to get by. He didn't 'choose' to have Down syndrome. There was nothing we did to 'cause' it. It's not 'fair' that he has to work twice as hard all the time...

In the world of Down syndrome, there is no denying that even play time can become 'work'. In these pictures Owen was 'working' SO hard to reach his toy. You can literally feel his blood, sweat, and tears pouring out of the images. Owen has an enormous disadvantage. Everyday, his genetic makeup makes seemingly insignificant tasks a challenge. Everayday things, that most of us take for granted, like learning to move, are inherently difficult for him.

My first glance at these pictures was fleeting...

I can't help but linger at the true beauty behind the images, and the gift they are, that Owen is, to us all. You see, Owen is determined. Our Owen has been a fighter since the day he was born -- Owen doesn't make excuses, and he doesn't quit; Owen lets NOTHING get in his way.

I think of Owen's fight on a daily basis. I marvel at his fortitude -- at his fierce determination -- at his inner strength. He is only 8 months old, and his persistance and percerverance constantly amaze me. Owen embraces life, and ALL that God has given him -- and he serves as a beautiful reminder for all of us.

To pass on our little blessing -- next time you get tired, or feel depressed, or feel challenged by the day God has given you, or the circumstances at hand, think of Owen, and his fight. Owen is a very real reminder that every day is a blessing regardless of your life's circumstances, and that God is with you ALWAYS.


"I can do all things through Christ who gives me strength"

Philippians 4:13

Monday, February 14, 2011

Advocacy and Awareness

Thinking Out loud:

I would never wish Down syndrome on anyone, but I would wish Down sydnrome on EVERYONE!

I know what you are thinking... What?? Well, It's true. While I wouldn't want anyone to worry about the different medical and developmental obstacles that our kids sometimes face, I would wish, with all my heart, that EVERYONE could know the undeniable and indescribable JOY and blessings our kids pour on us.

Sadly, however, there are many terrible misconceptions about DS out there... and even more sad is the lack of awareness of DS in general. Just today I came across an unfortunate example of how blissfully ignorant some people can be. Today I was approached by an older man in the checkout lane at the grocery store. He came up behind our basket and started tickling Owen's feet. "Is there something wrong with him?", the man said, "The face, is that normal?". You can imagine the many emotions that flooded over me in that moment. My "mama claws" came out, and my gut reaction was to put that man in his place. I wanted nothing more than to raise my voice and lay into him, "How dare you?!", or "Are you kidding me?!", or "What's wrong with YOU?!"... My gut reaction was angry and resentful. Thankfully, God gave me enough grace to keep my mouth shut and walk away.

In the end, I ultimately decided on taking the high road to set the example for my son, Will, who was also in the shopping cart at the time; but as soon as I made it into the car, I began to cry. I cried for Owen, that he would have to face such adversity at such a young age. I cried for Will, because I knew that he would one day face the same situation and I wouldn't be able to take the brunt of it all. I cried because I didn't handle myself well, I cried because I knew the way I had reacted wasn't going to teach Will how to handle the situation in the future. Mostly I cried because the way I reacted wasn't going to change anything.

I am so thankful I married such a wise man, because it wasn't until this evening, after talking with the hubby, that my epiphany came...

Perhaps it's the teacher inside of me, but I feel like I dropped the ball on this whole situation. My job this afternoon was not to get angry or to be resentful at this man's unfortunate ignorance, my job this afternoon was to educate! Today I had the grand opportunity... YES OPPORTUNITY, not misfortune, of running into someone blissfully unaware of how great DS is! I had the opportunity to share the LOVE and JOY of DS, and because I was unprepared, and caught off guard, it put me on the defense. It was my job to promote a spirit of love and awareness, and in every way I fell short.

Having said all that, I believe today was not a total loss! I have learned so much from this occasion, an I am certainly "armed" for the future. The feeling of empowerment I have right now is amazing! Chris and I have decided to make little business card fact sheets to carry with us in our wallets and share on moments like today. Our goal is to advocate for our son, to eliminate misconceptions, and to illuminate the positives of DS(and there are many!!). Hopefully this type of preparedness will allow us to think clearly in the face of adversity, and will enable us to teach BOTH of our sons to advocate for DS in a positive manner. The world isn't going to change it's perception over night, but the greatest impact we can have is going to happen one person at a time!

As for what should go on the card (and these are just ideas at the moment)...

1. Down syndrome is the result of having 47 chromosomes instead of 46. Individuals with DS are "extra" special!

2. Down syndrome is not a curse, or even a misfortune -- It is a BLESSING! I feel like a broken record here, but it needs to be said!

3. People with Ds are not scary, or "stupid", and they have feelings. They have love and faith and hopes and dreams, just like the rest of us.

4. The infamous "R" Word... It is just as bad as the "N" Word,when it comes down to it, and people throw it around as a casual insult. Maybe the card should read "The R-Word hurts... Please don't use it!"

5. The only difference between a person with DS and the "average Joe" is that people with DS are warriors from birth. They face challenges everyday that most of us take for granted, they shatter boundaries, they break the mold, they show US how to live.

Even facts might be good on there... Did you know that there is currently a waiting list in the US to adopt a child with DS?? The secret is out!

OK, I can think of a TON of other things I would like to add -- Maybe we should pass out poster boards instead of business cards!

What would you like to put on the card? I would love to hear suggestions! :)

I will write more SOON... It has been WAY too long since my last blog!

Monday, November 8, 2010

Houston Buddy Walk 2010

This weekend was the 10th Annual Houston Buddy Walk for Down Syndrome, and a perfect event to write about to kick off the start of our new blog, The Up Life! I've decided to start a blog for all of our out of state family and friends to keep updated on the goings on of our little family. Between this and facebook, I hope to keep everyone in the know. My blogs here will not only be about raising a child with special needs, but they will be about everyone in our family, with the emphasis on "Up" not down!

Having said that, we all attended the Down Syndrome Association Houston Buddy Walk this weekend, and it was a moving experience, completely worthy of a "first blog"! I can guarantee that this will be the longest blog I ever submit, but it is also the most revealing, and was the most therapeutic to write! :)


Wow! Where to begin! I never imagined yesterday would have had such a dramatic impact on our little family. I guess I didn't realize how vulnerable, to some extent, we still are, and I certainly never expected a mile and a half walk to be so meaningful!

To explain myself, I guess I have to backtrack about three and a half months ago to the arrival of our newest family addition, Owen. You see, Owen was brought in to this world with a labor and delivery experience unlike most others.

I look back on the day Owen was born, and I am still in shock at it all! I can't believe I had NO CLUE we were in labor! I just knew that since this was my second baby I would be prepared, but God had a different plan in mind, and we went into labor, a month early, with NO warning!

I ended up sending Chris and Will to church that Saturday night so I could get some rest. I wasn't "feeling well"... needless to say, my feelings didn't subside, and I ended up driving myself to the hospital. (This was no concern to me at the time since I had done this several times before. Preterm contractions were not unusual for us... I'd just drive to the hospital, get a shot to stop them, and be sent home again.) This time was different though, upon my arrival I was dilated to seven centimeters, and there was no stopping him, Owen was on the way. Ready or not!

By the grace of God, Chris made it to the delivery room just in the nick of time, and my buddy Matt was able to whisk Will away just before it was time to push. Owen arrived, July 24th, less than an hour from the time I got the hospital! Owen was born 6lbs and 6oz, at 8:09pm. I still feel pangs of shock just thinking about the speed of it all!

There we were... basking in the joy of our new baby... this one with my brown hair, and lots of it! I will never forget staring into the eyes of our purple baby... that's right... Owen was purple! It took a while for him to breathe, but he got it, and the purple turned to pink, he was beautiful! We snapped a few pictures and the basking was over...

All of a sudden, things changed. Not abruptly, but in a fast gradual progression of sorts... Owen needed some help breathing. We were assured not to worry because this was common for preemies, and Owen was scooped away.

The next eight hours seemed like an eternity... completely different than after Will's delivery. With Will, he never left my sight... in fact the nurse handed him to me immediately after he was cleaned off and told me to nurse him! I had no clue what I was doing then, but this go 'round, I was prepared! I was looking forward to the experience of feeding my new baby for the first time, only, there was no baby... I was babyless.

My family popped into the delivery room to say hello, it was a miracle they made it in on such short notice... They got to peek in the window on our little bundle in the transition nursery, then it was off the our house with Chris to pack up Will for a night with my parents.

I waited. Alone in my delivery room. Babyless. Things started to feel "fishy" to me right away. I shrugged off my unsettled feelings to the shock of it all, and waited. Babies are born early all the time right? Owen was in capable hands, yet I still couldn't relax. Granted... I had just given birth... without any pain medication... again I attributed my anxiety to shock... but why wouldn't they give me any updates? Why couldn't I hold my baby?

Finally, about an hour later, I got to leave the delivery room, and on the way, I requested to stop by the nursery to see Owen. He was naked, with the exception of a diaper, and connected to all sorts of cords, but I got to hold him. Even with all the devices hooked up to his little self, he was beautiful. I touched his hair, his face, his fingers. I asked the nurse, " Isn't he beautiful?". She agreed. I was in awe at God's little creation.

I asked how he was doing too. Again, I was met with some unsettling circumstances. They couldn't tell me much, until he could be seen by a doctor, but he still needed a lot of help, so it was likely he would be transferred to the Neonatal Intensive Care Unit (NICU) if things didn't shape up.

For some reason, I couldn't shake this nagging feeling... my instinct told me there was something more going on. I didn't think they were telling me everything. I managed to shake if off a bit, this time I attributed it to being alone telling myself, "It's only because Chris isn't here".

I was rolled off to ante partum, and after what seemed like an eternity, Chris was back. I felt joy again. For the next few hours all we could do was pour over the many miracles of the day. We agreed that God's hand had orchestrated everything perfectly; there was no denying that Owen would have been delivered on the floor board of the car without all our blessings! in the back of our minds however, we still had anxiety about Owen's progress, and no one could tell us anything.

Finally the call came in that enough progress hadn't been made; Owen was being moved into the NICU. Again the anxiety. "He wasn't born that early... What's going on?", we asked. Again we were met with ambivalence. Yet this time, we knew there was more they weren't telling us.

Come to think of it, that whole evening, all of our nurses were keeping to themselves, seemingly avoiding us. Our suspicious, for the lack of information, were leaning on Owen's underdeveloped lungs. "Can we talk to the doctor?", we asked. After much persuading, we got a second call from the doctor. "We are still admitting you baby into the NICU, ma'am, we'll call you in a few hours and you can come see him"...

By this time I still hadn't gotten to feed my baby. I didn't want him to be given any formula, so I insisted on a breast pump, and called the NICU back to come get the milk. "Can you bring it down?", they asked. Are you kidding me... I thought ...I just delivered a baby 8 hours ago... I am still hooked up to an IV... I can barely walk! Still, I relished the opportunity to visit my Owen, so I made the long walk to the NICU.

I had never been to a NICU before, but they made me "scrub down", much like surgeons scrub in for surgery. As I approached Owen's bedside I must have been grinning from ear to ear. He was absolutely perfect. There were a few nurses standing over him, but I really didn't seem to care about them. My eyes honed in on God's perfect creation in front of me.

I went straight for his little hand and cupped it on my finger. "Isn't he beautiful?". I asked, without hesitation. A pause. No answer. The nurse practitioner spoke, "We think he has Down Syndrome", she said, abruptly.

My knees buckled. I couldn't breathe. Time Stopped. It was a blur. While I don't remember sitting, somehow I found myself in a chair. I don't know what was louder, the sound of my sobs, or the droning of the nurses voice as she proceeded to point out all the soft signs of Down Syndrome. His toes, his hands, his ears, his nose... she went on...

I had imagined examining Owen much differently. In my mind, I had imagined Chris and I sharing a private moment with our baby. "He has your nose", I would say, then Chris would chime in, "and your lips...", we would go on... Sadly, at that time, the moment was lost. We were robbed by this nurse, according to her, our baby's features belonged to Down Syndrome.

Somehow, I managed to choke a few words out. "Can you go get my husband?", I asked.

That's right... Chris wasn't even there... she couldn't have waited a few moments to tell us both together... and my heart still breaks for the scene Chris had waiting for him when he arrived. He could probably hear my shock from around the corner. Walking towards me, his face was blank. He thought Owen had died.

It is unspeakable, the way this nurse had broken the news... it was completely void of any compassion. At least one of us was composed. "What does this mean?", Chris asked. She went on with a list of the lifelong traits of Trisomy-21. She painted a horrible picture of what our life was going to be. She said nothing positive... In fact, she even told us that Owen would have a shorter life expectancy.

Looking back, we know this isn't true. Now a days, due to so many medical advances, Down Syndrome does not affect life expectancy in the least, and Down Syndrome is NOT a curse, or even a burden, it is an indescribable blessing, but to hear her diminish my baby's life potential and livelihood a mere eight hours after he took his first breath, was abominable. She went on to say that the hospital would be running a chromosomal test to make sure there was, in fact, a trisomy-21, and also a full examination of Owen's heart, since heart defects are very common with Downs.

So many agonizing emotions flooded over us. Fear, anxiety, grief, uncertainty; we were in darkness, and we were suddenly plagued by an infinity of unknowns. The world as we knew it was forever changed that morning.

It was 4am. We could not possibly process all that we had been through in the last eight hours, or even the last thirty minutes for that matter, and there was a long walk back to our room. Chris and I were zombies.

Chris was holding me up on the one hand, my IV dragging behind in the other. "We can do this. Owen is going to be fine. We are going to be fine. We can do this together", I whispered. It seems silly now, but at the time, I don't know who I was trying to convince more, him, or me. Not another word was spoken.

We continued on like zombies for about a week. We were constantly in prayer. Praying that God's will would be done in us, whatever the verdict would be, and praying for the grace to get through it all. We prayed that we would be able to provide for Owen as he needed, we prayed for EVERYTHING.

Eventually our grief turned into anger. Anger at the horrible nurse that set us up for failure, anger that our Owen's joyous birth experience had been robbed. Our anger then faded to confusion. When we were told Owen's test results were in, we were initially told Owen did not have Down Syndrome, but more testing needed to be done. Imagine our stupor when the doctor came back with, "I'm sorry ma'am, we've given you the wrong baby's diagnosis. These are not your baby's results".

Then came acceptance. A few days later, when OUR results were in, we had them check and double check to make sure they were Owen's. Sure enough, Owen was diagnosed with Trisomy-21.

Finally, we had peace. Sweet peace. It was easy to hold our Sweet Owen in our arms and feel God's peaceful presence, we knew that feeling from the beginning -- Owen has been peacefully in God's presence since the day he came to be -- I am ashamed it took us so long to arrive at that same state.

Ironically, Owen was in the hospital for 21 days. Over those long 21 days, Owen had many ups and downs, as did we, but we were all transformed. God continued to work on us and to provide for us in ways we didn't even know we needed. We encountered so many loving people that blessed us substantially, literal God Sends.

{Our Nurse, Angie, with her testimony on her life's incredible journey raising a child with special needs. Our Nurse, Ruth, her compassionate prayers, and the devotional she gave us. Our friend, Jerry, who graced us with his wisdom and truth and his devotion to our Mother Mary. Our Nurse, Nienta, and her prayers. Our cardiologist, Dr. Quinones, who assured us Owen was going to lead a marvelously joyous life, he assured us we were "chosen" to be the parents of such a bright baby. Our Nurse, Kathy, thanks to her, Owen was called "Sweet Owen" for the entirety of our NICU stay, she constantly doted on our little angel. My friend, Beth, the mother of a 5 year old with DS, who came to the rescue with a slew of information, books, and parenting resources. Karen, our lactation consultant, who constantly encouraged me to breastfeed, even when the doctors said I couldn't. My Aunt Evelyn, and my dear friend Kristine, who came to visit bringing their beautiful smiles. My Nana, who brought us her incredible homemade chicken noodle soup, chicken soup for the soul. All of our family members who sent us gift cards for fast food... I don't think I had to cook a single meal during our hospital stay! Our son, Will, who's innocence on the whole situation was priceless. Will graced us with an innately loving acceptance of Owen as his baby brother, nothing more, nothing less. My family, especially, who were some of the only people to treat Owen as if he were any other new baby, and who put their lives on hold to take care of us and Will. My Mom, a special education teacher, who I still talk to at least once every day since Owen's birth, who is a fabulous listener, and a constantly loving motivator. All of these people, and many more, are all gifts from God.}

Life goes on, and beautifully, I might add. By the grace of God, and our tiny Owen, we have been transformed. God is awesome. To this day, God continues to shape our hearts!

...Which brings me back to the Buddy Walk. Again, I say, I never knew a mile and a half walk could have been so touching.

This weekend, as we arrived in Jones Plaza, we were greeted by a whole host of cheering fans. Literally, there was a welcome line!

It was fabulous! As we walked up to the welcome line, a friend of ours said, "Go show that beautiful baby off!", and that's exactly what we did! As we took our first step down the welcome line, we were immediately moved to tears. It was like Owen was being born all over again, only this time there was nothing but joy and love and acceptance. Owen's arrival was celebrated!

Leaving the welcome line, we entered a plaza full of families just like us.

With out even knowing most of the people there, we were accepted as family, one big happy Down Syndrome family! We were joined by babies, children, adolescents, and adults with Down Syndrome, and their supporters, all walking the Down Syndrome journey. It was breathtaking.

Throughout the day, everyone wanted to take a peek at our little Down Syndrome angel. Although we already knew it, it was refreshing to hear everyone tell us how beautiful Owen is, and how blessed we are to be his parents, and there was nothing but sincerity in their voices.

Stepping off on the Buddy Walk, with our new found friends was an exhilarating experience.

Yesterday, I was finally able to cut the strings of anger and resentment towards the experience that was stolen from us at the hospital. Yesterday, we found peace and Owen's birth was celebrated with the greatest joy and enthusiasm; yesterday, he was welcomed as he should have been this July.

Thank you Down Syndrome Association of Houston!

So what have we learned from this experience? We are all beautifully and wonderfully made in God's image and likeness, and for His purpose. I believe that people with special needs are more an image of Our Lord than anyone. God did not make people with special needs on accident. On the contrary, they are beautiful reminders of all that is good, and true, and loving about this world.

Owen has opened our eyes to the world around us, and is already the greatest "life coach" we've ever had. Our faith, hope, and love have swelled.

You never know when your life will be turned upside down, or in our case, right side UP. The UP life!