Whispered Grace

why can't it be easy

because all have sinned and fall short...someday it will be easy forever

why can't I get to breathe for a while

because He wants you to know what it is like to feel Him breathe for you when you are suffocating.

why is he blue

because his norm is beautiful pink lips and skin, because you've been given the gift of life

why do I have three children with labels each ending in syndrome

to make me compassionate to those hurting, to make me relatable and real, to give me the platform I've prayed for, to make me a dynamite mother.

why have I known such pain and still get to

because you want to know Him you strive to be who He wants you to be

why do I have specialists that most people have never heard of...for each of my children

because you live in a country that allows you the choice of healthcare providers. Because you are blessed to have instant medical care at your finger tips; because God has equipped amazing experts to use their amazing minds to change my childrens' lives

why does he struggle for breath so much and why does it remind me of hellish times watching my little girl struggle for breath

because he has breath to breathe

why can I never have control

because I've surrendered all and I want it that way. Because His plan is so much better than any idea I could ever come up with.

why do I question everything he does wrong as is it his syndrome or just an infant

Because God has given me wisdom that only a mother can have, and He prompts me to think deeply and advocate for my children.

why does my life make people's jaws hang open in disbelief

Because God is using all of this for a greater purpose, allow Him too.

why can't he use someone else to bring Him glory through suffering just for a while?

Because He thought you able; and you deserve nothing. And His grace overwhelms you almost daily...remember that.

why does my heart ache when I see someone with Down Syndrome now

Because God has given you the gift of processing, and He is teaching you to focus on Him one day at a time.

why do I laugh when I can't figure out if I'm crying because of hormones or because I have a huge justified reason to cry after all I've been through

Because if you didn't laugh, you'd lose it completely.

why is this the pattern for us

Whether it is the pattern or not, God is good...all the time.

why not just one of my children

Because with each syndrome has come a gift no other will know

why must I know that if I had another baby it too would have a special need, simply because of a pattern

because insight is interesting and following His will takes courage

why is it lonely when you know it really isn't

because you forget to keep your eyes on Him, you forget to watch for Him

why does a lady showing a picture of carter's future disturb me so

Because you forgot what a gift it is to have knowledge and not ignorance. Because He sends resources to help.

why is the decision to bring him into the hospital such a familiar decision for our family

Because God has used the hospital to bring breath into your daughter's lungs many times.

why doesn't zachary bat an eye when he hears us deciding if we should go to the hospital, why is that such a normal conversation for him to hear?

Because God has prepared him for a different normal, since our normal is like no other.

why is my amazon cart full of books about down syndrome and how to tell small children that my child has it

Because God has picked the right mom to handle it all.

why are we watching dvds to learn sign language

Because you love your son and God has given you a way to communicate easily.

why when a 7 year told me my baby looked different did I think about it for the next 8 hours

Because you love deeply.

why do so many tears have to drop

Because you live in a fallen world. Because being refined hurts.

Keeping it Real

While I watched my 6 week old's face turn blue, willing the color back into it...I just crumbled. I called Kirk home from a meeting and we sat at the table and I just cried. There are days where I can proclaim suffering as a priveledge and there are days I make myself proclaim, but there are also days where I crumble and can't see clearly. Today is one of those...today was a day where I looked up and said "enough". Today was a day when "why" is my question

why can't it be easy

why can't I get to breathe for a while

why is he blue

why do I have three children with labels each ending in syndrome

why have I known such pain and still get to

why do I have specialists that most people have never heard of...for each of my children

why does he struggle for breath so much and why does it remind me of hellish times watching my little girl struggle for breath

why can I never have control

why do I question everything he does wrong as is it his syndrome or just an infant

why does my life make people's jaws hang open in disbelief

why can't he use someone else to bring Him glory through suffering just for a while?

why does my heart ache when I see someone with Down Syndrome now

why do I laugh when I can't figure out if I'm crying because of hormones or because I have a huge justified reason to cry after all I've been through

why is this the pattern for us

why not just one of my children

why must I know that if I had another baby it too would have a special need, simply because of a pattern

why is it lonely when you know it really isn't

why does a lady showing a picture of carter's future disturb me so

why is the decision to bring him into the hospital such a familiar decision for our family

why doesn't zachary bat an eye when he hears us deciding if we should go to the hospital, why is that such a normal conversation for him to hear?

why is my amazon cart full of books about down syndrome and how to tell small children that my child has it

why are we watching dvds to learn sign language

why when a 7 year told me my baby looked different did I think about it for the next 8 hours

why do so many tears have to drop

One Day At a Time

One day at a time...a phrase I seem to utter a lot lately. We had someone from Sharing Downs Syndrome over this week. She shared pics of her 26 year old son, told us all about Carter's future, and oohed and awed over what a gift Downs is...we smiled big and I nodded firmly with excitement.

The next day I cried...all day. I couldn't figure out what was wrong with me and then realized my "one day at a time" was hijacked the night before and I was shown a lifetime in full vibrant colored pictures and it was too much. Baby steps, Kristen, baby steps. All that combined with a a baby boy who decided to cry each moment he is awake and who pants like a dog 100% of his awake time...I was not "on edge" I was over the edge. (I took him to the doc and said if they can't fix his panting, I'd need to walk out of there with a script for anxiety meds...turns out I'm gonna need the meds)

So, reality folks, Down Syndrome can scare the bageebies (I wish I knew how to spell that word) out of me. When I allow myself to be talked to or think about 30 years from now, I can feel some panic. But, one day at a time. Because today, when I look at my 6 week old I see Carter, I absolutely see no Downs. And because I can say that today...I know in 30 years I will see Carter and no Downs. So, I take it one day at a time.

(a side note...have you ever seen a baby so cute...I LOVE this boy)

A Secret

There is a little known secret that I think I need to share...
All the mommies think that having your babies close in age would be a sweet thing...
This mommy will let you in on a secret...when your oldest is 8 years and your youngest is 5 weeks...
The magic is miraculous and the love is so obvious. The eight year span allows a special big brother to understand the miracle of his little brother, and remember each moment forever. The look on Zachary's face on the picture above is a look we've never seen before. It is the look of total mesmorized love that seems to be plastered on my 8 year old's face each time he sees his little brother. The look on his face confirms what I've felt for almost a year now...Zachary needed this little brother and Zachary feels love.

The Scoop in our Home

Well, look who is starting to wake up. Yep, that honeymoon period where your little one sleeps and sleeps and sleeps, well that is coming to an end and we are beginning to see this little one's eyes more. Carter is definitely spending more time awake...it is super fun! He is 5 weeks old already, can hardly believe it. I guess to us he is more like 3 weeks since he spent 2 weeks in the NICU, but needless to say, time is going way too quickly (well, perhaps in the middle of the night, time stands still a bit). We are head over heals in love with this miracle. The kids can't get enough of Carter, especially one very big brother...but I'll save him for another post.

Carter is just the absolute cutest, he rarely cries, and if he does it is more like a high pitched screech and then it's over...takes him a LONG time to work up to a cry, so sweet. Life is extremely different in our home, people are tired, life is a bit scattered considering there once was a mama who was highly organized and got to put a wonderful check mark on every item of her list daily, kids have been late to school, important appointments forgotten, but our life is full of sweetness right now. Lot's of moments just sitting on a couch, watching two big kiddos play horses and Trios, and holding a special gift that smells delicious...a combination of spit up, laundry detergent, baby, and Johnsons and Johnsons...scent perfected. We are living a slow, exhausted life...and it couldn't be more complete.

Conversations with Kenzie

The other day we were in the car picking Zac up from school. Kenzie now rides in the very back of the van, which makes her quite proud. Zac gets to ride by carter in the middle...she has no clue she got the bum end of the deal, but it sure is a lot quieter with her in the back now!

So, she says to me "Mom is he a boy?" I said "Is who a boy?" "Carter, is he a boy?" I smiled and giggled a bit and said "Yes, he is a boy, he is your brother." She began to cry in a dramatic life is over way and said "I wanted a girl, not a boy."

Ramblings from a Sleep Deprived Mom

So it occurred to me that I failed to mention that Carter is home with us from the NICU. I did put it on Facebook, but I suppose some of you with massive will power who have not allowed your brains to be sucked into a black hole of timeless waste, would not have known that he is home. So, congratulations on not being on Facebook and now you know we are a family of 5 under one roof again.

It is the most bizarre feeling to not have your baby inside of you anymore, seriously, I wasn't prepared for the sadness that comes with birth, just not having your companion with you all the time...perhaps mine was more so because I didn't get to bring my baby home with me right away, I'm not sure, but I was just pretty sad about losing that bond that only I had. But it is simply marvelous to bend again, to plop onto my bed right on my stomach and do it with a delicious smile because I CAN. There is something amazing about sitting on the floor and bouncing right back up, well I suppose that is amazing to most but I'm old, so my bounce is a bit slower than most, but seriously it is quite nice to move again. Know what else is amazing...lunch meat! I have had Subway probably 7 times in the past 3 weeks...loaded full of lunch meat! I cannot get enough of it, oh that and Dr. Pepper, who knew those two could be so meant to go together! The bummer thing is, the stuff that sounded just wrong when I was pregnant, still sounds wrong...chicken breasts, still having a tough time with those, and the smell of coffee.

I adore watching my little red head. I love when his lips suck while he is sound asleep, like he has a pacifier or something in there...ahh love that. I find myself feeling just sad and sometimes panicky about him. He is growing already, getting bigger and stronger and I'm just alarmed at the sadness I feel about him growing up already. I've never felt that way with my other kiddos, but it's happening now. I sit in our chair, and try to study every baby thing about him, trying to memorize it. I'm not sure if it's because my journey to him was so very emotional or if it's the knowledge that most likely he is my last baby...perhaps both combined are enough to make me teary eyed when I sit and study him. But he has enough sweetness to melt any heart.

I worked out today for the first time since Christmas Eve. Yep, you read that right...in the beginning they said no exercise because of the spotting, which happened to last almost half of my pregnancy and then the other half they said no because they thought I'd go into preterm labor because I had spotted so long...so, today was the day. My work out consisted of following a pink barbie bike around the block, surely it burned calories???

I had mastitis last week, if you don't know what that is, consider yourself highly blessed. My temp was 104.9 and I was asking to be shot. It brought back similar feelings to the contractions that were just beginning to leave my memories. It also wiped all my milk out, and it hasn't come back yet and it ain't lookin like it will. Yep, I had some big emotions about that, perhaps a slight tantrum with the Lord over why things just can't be easy at times, and a few hormones thrown in the mix created quite the weekend for me and well, my husband specifically.

My camera isn't working well, funny how the most important time ever...the birth of my baby and I have no camera to use (well, I have my cheapo, but that hardly qualifies as a camera to me), and I haven't had photoshop since Christmas, which seemed okay to me while pregnant, because very photographic creative juice in my body had been sucked out of me then, but now, I'd love to capture this adorable new buddy we have in our family...uugh.

We've had meals delivered to us for weeks now...it ends after next week and then we begin eating pizza, I'd say eggs, but not sure if the recall thing is still going on. Seriously, it has been a dream to have dinner just appear at my door, it is almost worth having another baby immediately to avoid dinner again! Zachary asked last week if God sometimes gives us two babies, I said yes and explained twins. No, that wasn't what he meant, he wanted to know if we'd get another baby. I said probably no, he asked how I knew, then I realized I didn't know and God kindof seems to get His way most often, so who was I to say no? I just smiled and said "We'll see bud." My heart is palpitating now.

I'm feeling panicky lately, like you throw in that third newborn and your world spirals out of control. How is it that someone who literally only sleeps, eats, and poops can completely turn you upside down? Oh, it must be a little friend called THE PUMP that is consuming all of my time. There are moments when I look around and see burb cloths hanging over the couch, bottles all over the counter, toys everywhere, beds "kindof" in an 8 year old way made, homework to help with, homeschooling to do, and then the questions of "Have I spent enough time with each of them?" starts to plague and the answer is always a big fat no...and then I get this urge to just scream "STOP IT ALL". Heavy breathing starts, sometimes tears threaten and I get this doomed idea that my life will never be "together" ever again. THEN, I mentally scream at myself to stop, be still, soak the moment and scene in because in the blink of an eye, my kids will be grown up and I'll be begging for star wars heads to get stuck between my toes and I'll miss scrubbing bottles and pumping the tar out of myself, I'll miss them. So, I try to be okay with this new life of chaos and I know it will all come together soon (perhaps when I sleep a bit more eh, find my Bible again and meet my Lord again, and perhaps do more than follow a pink bike around the block).

I am sorry to send some in a panic...I received quite a few emails after I finished my little chapter book last week. Some of you thought I was ending this blog; nope, just ending the chapters. I said possibly to be continued because I no dummy, I know I'll have more to write in the future...my goodness, we just started the journey of Downs Syndrome! Did you know years ago when I was training and pursuing public speaking, I prayed for a topic to speak on. Do you know what...ya'll can stop praying for a topic now...I've got more than enough...you hear that God? (Yep, I'm winking and smiling as I type that question mark)

Do you know I haven't picked up my hair dryer for two weeks, which literally means I haven't done my hair. But don't you worry, I've had eye liner and lip stick on every day for two week...my priorities are straight.

I totally think red lights should be a tad bit longer, cuz when it goes green so fast, I totally miss out on the nap I was settling in for. But, 4 way stop signs...now that has mucho potential for napping time.

Prayers for Paxon

I met Rachel through the wonderful world of cyber space. I immediately related to her because she too knows the need to pray for breath for her son and she knows a little about a thing called THE VEST, and knows how scary it can be when her son gets sick. Rachel's son , Asher, has Cystic Fibrosis and knows a life full of breathing treatments, vest therapy, and praying for health.

Rachel and her husband Jeremy are again facing big uncertainties and tragedies. They have been heavy on my heart and I want them to be heavy on your heart as well, enough for you to pray deeply for this family. Rachel and Jeremy just found out that their baby she is carrying has a rare chromosomal disorder. Paxon has a deletion of chromosome 4, which is a big deal. From what I understand these babies really don't survive past 6 months.

Obviously Rachel, Jeremy and Asher are devastated, as are many who love them. If you would join me in prayer for this precious family, that would be awesome. I know all too well how BIG God can work, and this family needs to see Him in a BIG way right now. It is just heart wrenching to be told your baby is going to die, but there is something just devastating to receive this kindof news when you already have a special needs child at home. This is something not many people can understand. There is a feeling of being slapped across the face, and you just want to yell "You've got to be kidding me!" to the Savior. I know this family must be just reeling from this news. So, I ask you to pray for them however the Spirit guides you. You can follow Asher and his little brother Paxon's stories on their wonderful bloghttp://www.asherolimb.com/blog/