Brotherly Love

Yesterday at school Luke had an all school BBQ where families could come and have lunch with their children (now, we all know that BBQ is cafeteria lingo for "mystery meat"...but nonetheless we went!). I knew Luke was excited to have us come join him for lunch so I popped Reid in his stroller and headed over. Just as we entered the campus Luke's class was heading over to the lunch line....when Luke saw us he came bounding over shouting along the way, "Mom, I just wrote about Reid in my journal and read it in front of the class!" and then proceeded to give his best little buddy a hug. It was fun to be there with the other families and to hear Luke's conversations with his friends which were riddled with spontaneous giggles. He loves school! After lunch and before heading out to play what is now his new favorite sport, "handball", he gave his brother another hug and a kiss. He loves being big brother, most specifically to Reid!

Later that night I asked Luke what it was that he had written in his journal about Reid... below is his journal entry. You just gotta love this sweetheart of a first grader!

MY BROTHER

My brother is very cute and funny. He sometimes scratches me. He has this disability called Down syndrome. Down syndrome means it takes him longer to learn stuff, but I still love him. Do you have a brother?

Luke has such a tender heart and adores his brother! It just makes my heart swell!! I love being "Mom" to both of my beautiful boys!

Heading out to go camping!

Snuggle Bugs!

Rough Housing

Lost My Groove

I haven't posted lately...I lost my groove I think. Actually, I guess I got the wind knocked out of me so to speak when I learned that Reid's little friend Zoey is now battling leukemia and then learning that our littlest buddy will have his second heart surgery December 2nd. I have gone into numb mode I suppose, which has been taking turns with task mode...trying to check off my list all that needs to be done before going into the hospital.

But, this post is an attempt for me to pull out of it... to take life by the lapel as the quote below suggest though really I feel like life needs to take me by the lapel right now... but I'm working on getting my groove back.

Life loves to be taken by the lapel and told: "I am with you kid. Let's go." ~Maya Angelou

October: Down syndrome Awareness Month (Post #17)- If Hospital Walls Could Speak

I  was just up at the hospital to pick up a prescription for Reid... and as I came up over the hill and began looking down at the lights of the hospital, I was flooded with a thousand different feelings, moments, and experiences that that hospital held for me within its walls. And that's just me...just imagine how many others, it is really powerful when you think of it. So many stories are held within its walls... stories of birth, and hope, but also heartache, and grief. Next to church, I would say it is where most prayers are lifted up. A place that even those not accustomed to prayer find themselves on their knees. I know I have done my share of praying within it's confines.

When I saw the lights tonight I focused in on the room that I knew to be the one Reid stayed in after his heart surgery in August of 2007. Sobering really. I was reminded of the kindness the doctors and nurses bestowed on us...and the plastic walls of Reid's crib which were plastered with pictures of him and his brother, Toby and I loving on him, and of his little friends that he had made in his 7 1/2 months of life. I was reminded of the day he was born, same floor just different wing, and the anguish I felt after hearing the news that they believed he had Down syndrome. I remember both Toby and I nearly buckling to our knees when our cardiologist who after going over Reid's heart condition and drawing diagrams began to leave the room, but decided to open the door again and stuck his head back in to say, "Congratulations". We hadn't heard that except from family...not yet, and tears began to fall. It is very fitting actually that Dr. Loo is in the heart business, he has a HUGE heart himself. You can't imagine how much we needed to hear that.

As I continued on my way tonight to run my errand, I saw the children's wing that has been under construction for quite some time and drew my eyes to the area where I knew a very special beam was placed...a beam I had signed in honor of our family and the doctors who helped Reid through surgery. It was the last beam to be placed and the hospital asked for the community to come out and sign it...we had great reason to participate as we had just brought Reid home after a 2 week stay to repair his heart. I am so glad we took the time to do that, I will always look in that direction and know that under all the plaster and paint...that steel beam has our names on it...no one else would of known that unless I shared it...just another story that hospital holds captive.

I parked and scooted up the stairs toward the pharmacy but not before taking in the spot where the picture that is posted was taken. The morning of New Year's Eve 2006 we were bringing our baby home to continue our story (and yes...sorry east coast visitors those are indeed flip flops in the dead of winter). Our story is now 22 months in the making...and as the story goes it looks like we will make another extended stay at this particular hospital in late November or early December for heart surgery #2, one that was not anticipated and certainly not welcomed, but Reid's little body is deeming it necessary so we must.

As I write this I have two friends who have their sweet little girls in the hospital, Presley... who is fighting pneumonia and Zoey who is fighting a childhood enemy, leukemia. I ache for them, the only chapter in your child's life where a hospital should be included is the first chapter...of birth. We could do without the rest, most certainly the moms of these precious little ones would agree! Please click on their names to find your way to their blogs and...please pray for them as their stories continue to unfold. 

October: Down syndrome Awareness Month (post #16)- Yikes running WAY behind in my posts!

Well...it is the 30th of October and I am feeling like I have fallen very, very short in trying to post 31 days for trisomy 21.... although if you read my post #1 for October I knew 31 would be a stretch for me this year so I had committed to only 21 in honor of Reid's extra 21st chromosome this time around...next year I'll do all 31! So, I am going to be up all night if I have to... come on 21... This counts as a post right?? come on people work with me it is getting late!! :) I'll add a picture to "cutesie" it up. If I didn't know better I'd say they were laughing at my blog! :)

October: Down syndrome Awareness Month (post #15)- Sleep Apnea

Oh to be able to sleep like this again...anywhere, anytime!!

Though I don't believe Reid has an issue with sleep apnea, after reading about the incidence in children with Down syndrome I am definitely going to bring it up at our next appointment with his pediatrician. Actually,  I read that most parents don't even know that their child suffers from this. Hmmnn...am I one of them?

According to Babies with Down syndrome-A New Parents' Guide, sleep apnea occurs more often among premature babies, babies with certain medical problems, and babies with Down syndrome. Among babies with Down syndrome, sleep apnea is usually due to upper airway obstruction. The upper airways can be obstructed by large adenoids, large tonsils, large tongue, or a combination of the above. Symptoms include noisy breathing, temporary

stopping of breathing, fitful sleep, and snoring. Children 

with these symptoms have difficulty in draining fluid from the middle ear to the throat, and more importantly, have decreased oxygen levels in the brain, lungs, and the rest of the body during sleep. It is recommended that children who experience

 these symptoms have a consultation with an ear, nose, and throat specialist.

Yikes, one more specialist for me to visit. I have been meaning to make an appointment but have not felt the urgency since Reid luckily has not had much to battle in the way of ear infections, fortunately. However, lately I have been hearing a lot about "Sleep Studies" done to determine whether their child has sleep apnea, and also heard of many having their child's adenoids 

and tonsils removed...and now it is all making sense to me. Okay, so just because this is Down syndrome awareness month, it doesn't mean that I can't be included in the gaining more of an awareness myself! So, this post was for me I suppose so I would be forced to learn a little bit more about this issue and to force myself to make that ENT

appointment. 

Well...it also gave me the opportunity to post these sweet "sleeping guy" pictures!