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! 

09 November 2013

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. 

03 November 2013

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 "d├ębutante") 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

31 October 2013

Halloween 2013: Lions, Tigers and Bears, Oh My!

I failed to get some photos up here the night that we went "Trick or Treating" at our church, where we actually call it "Trunk or Treating"... so here are some photos of our sweeties in their costumes.  Matthew was a lion and Luke was a tiger.




23 October 2013

Bristol Palin Features Luke On Her Blog

As you may know, Bristol Palin, daughter of Sarah Palin and sister to Trygg Palin, a sweet little boy with Down Syndrome, is featuring an individual with Down Syndrome on her blog each day in October to raise awareness for Down Syndrome. Today, our beautiful little guy Luke was the center of attention! I can't believe she chose him to be featured on her blog today in support of October is Down syndrome awareness month!!

Uncertainty Followed By Anticipation, Ending in Love

16 October 2013

Help Us Purchase Gifts for Babies in Cleveland Clinic NICU

Earlier this month, I wrote about a fundraiser that I'm working on to raise money to purchase Christmas onesies for the Cleveland Clinic Children's Hospital Neonatal Intensive Care Unit in Cleveland, Ohio where Luke was born and spent his first Christmas.  As I shared in that post, we were unprepared to deliver Luke 3 weeks early and didn't have anything special for him to wear on Christmas Day.  Furthermore, we were away from home and away from family.  In fact, we were only allowed to visit with Matthew for 30 minutes that day and only because the NICU made special accommodations for us to use a private room so we could all be together for the first time on Christmas.  It was one of the most precious 30 minutes of my life and I've linked a video below if you'd like to share it with us!

I have been amazed by the generosity of our family and friends and on more than one occasion I was brought to tears by donations that have been made!  Today I received a Kohl's flyer in the mail and it included a 30% off coupon, plus Kohl's Cash that starts tomorrow (and one of the managers at our local Kohl's has also agreed to give me an additional 10% off!!).  That said, I'd really like to make my purchases in the next few days so I can get the Kohl's Cash to use for additional onesies (and maybe some sweet little matching bows and/or headbands for the girls and some sort of accessory for boys, too) during the redemption period.

If you would like to donate to our cause, please use the Donate button or link below.



If you can't see the button, use this link: Donate Now




P.S. I researched obtaining some corporate support from a number of baby apparel and toy manufacturers, however they all require official non profit status... definitely something I'm going to consider getting organized before this time next year.  I have so many wonderful ideas of how we could support special needs awareness in our community!

Luke's 2nd Tooth

Another tooth!? It's the bottom middle right one so now both of his bottom middle front teeth are peeking through!!

On a completely different subject, Matthew used to yell "Mommy 'mere" or "Daddy 'mere" from his crib in the morning after he'd wake up. It was just about the sweetest sound I'd ever heard. It's lately been replaced with him crowing like a rooster in the screechiest voice he can make. It's bittersweet for sure to watch him grow up!

14 October 2013

Love has a way of making statistics irrelevant...

I wish I had saved the link to the article where I picked this up, but somehow I lost it as I was surfing the web. The article was in reference to the "olden days" when parents of children with Down Syndrome (DS) were advised to institutionalize their babies. The author talked about how the world was a better place to live with DS today than it was even in the 70's & 80's although much of that same kind of advice was given to parents long before that time. It's amazing to me as the mom to an almost 10-month old with DS, who is one of two brightest stars (the other being his brother) in my world. A life without either Matthew or Luke is inconceivable. Period.

Below is the quote I copied from this mystery author.  I loved the first sentence!

Love has a way of making statistics irrelevant, and in it, comes a special kind of knowing. I do not love my son any less because he has Down syndrome. His diagnosis says very little about who he is. He is not a disease or a syndrome but an individual.

13 October 2013

Friends, Ear Infections & Photos

We've had ourselves a great weekend.  We had friends over for dinner both Friday and Saturday nights and we have enough leftovers in the fridge to probably last at least a few days!  Both nights were great in different ways and we are so blessed with wonderful people in our lives!

Despite battling his first ear infection which we detected on Wednesday after a sleepless night full of tears and neediness, Luke seems to be feeling a little bit better now.  We had been told that because of him having Down syndrome which typically results in affected individuals having smaller than normal ear canals, that he'd likely have recurrent ear infections which would probably lead to him having tubes placed in his ears.  We've been expecting ear infections for months now and are grateful that he managed to get by for nearly ten months before developing his first one.  Hopefully this will be an isolated event and won't be something that we find ourselves continually battling for months to come. 

In just one week, we will celebrate our one year anniversary in our current home.  Our surroundings boast a very natural landscape with lots of trees and as such we've been blessed with the opportunity to enjoy the beauty of nature through each season over the last 12 months.  Right now of course, it's the fall color on the trees and the abundance of leaves in the yard.  I couldn't resist being outdoors some this afternoon and took some new photos of the boys while we were outside.  I know I'm not the only mom to think this about her kids, but seriously I know I have two of the most beautiful boys in the whole wide world!




04 October 2013

51.07% Mom

Considering I've been married for over 7 years now and began dating my husband a few years before that, I haven't had to experience a break up in a long time... it's a good thing too because, yuck, they are no fun. I did have a break up of sorts today however... with Luke's Genetic Counselor. This "break up" has had me reflecting on the relationship we've had with Medical Genetics in general and I have some thoughts...

While I didn't get the cliche line "it's not you, it's me", I did get "I don't think I want to see you again", which taken in a different context could have been pretty dang painful... this time though, it was rather exciting! When we had our first consult with medical genetics, I was still pregnant with Luke. We gave our genetic counselor (the assistant to our geneticist) the information about our family tree (it seemed like they wanted to go back about umpteen generations and were interested in every minor thing about every individual) and we also talked about how people get Down Syndrome. The visit was an especially upsetting one for me because I learned that in many instances [most actually], the mother contributes the extra genetic material in the form of a 21st chromosome that causes the baby to have Down syndrome (at least in regards to the Nondisjunction form of DS that Luke has). I've always kind of been a perfectionist... sometimes obsessively... I get annoyed if every strand of hair isn't perfectly straight after I've flat ironed it. My formatting has to be just so when I'm completing computer work. I like to be prepared before attending a meeting. My bed needs to be made if I'm having company, even when there is no chance they will be entering my bedroom. I feel the urge to have seasonally approriate candles. Sometimes I go overboard. I always have more than enough food when we have company. I find myself buying new clothes for special events. I have to vacuum before we have a therapy session for Luke (seriously, who wants to sit on gross carpet?). And although it irritates Dustin a little, I LOVE it when my boys match!! I don't always meet all of my own expections (and I've found that it happens less than ever now that I have two small kids), but I work pretty hard at doing things in a way that "feels right" to me.

The idea that I might have been the contributing factor to creating a "differently abled" baby was really tough to take. When the genetic counselor got to that point in our conversation, I lost it. I kept thinking, "What if Dustin blames me?, What if he stops loving me?" Deep down I even thought, "What if he leaves me?" In reality none of things ever happened and honestly, I'd be surprised if he ever even thought any of them. I know that Dustin loves all three of us and I there is no question in my mind how he feels about baby Luke, especially as I observe him almost running to him (and Matthew too) with hugs and kisses after a day at work.

So to get back to my conversation with our Geneticist, he told me "You are well adjusted in this role as a mom to a child with special needs, I'm really proud with how great you're doing. Don't sell yourself short. You are doing all the right stuff; you've sought out a great support system (the other moms in the Special Loves Network and a Facebook group that I'm in have been invaluable), you're participating in Early Intervention and have also engaged in private therapies, you're seeing the right specialists and have a great pediatrician. Ms. Taylor, unless you feel like you have unmet needs, I don't think I want to see you again". And just like that... he broke up with me! Adios, amigos! We were released from Hematology last month and now Genetics this month! I feel like with the exception of Cardiology and Developmental Pediatrics, we're probably getting close to splitting ways with some others too! I'd heard that the first year can be brutal as far as appointments are concerned and as we are getting closer to the one year mark, it feels good for them to be tapering off!

As far as that whole idea of me likely being the contributing factor to Luke having Down syndrome... the other side is that the next time he does something really awesome, I can brag to everyone that it's because he's 51.07% mom!

02 October 2013

Donate Christmas Gifts in Luke's Honor

Last week, Luke turned 9 months old... before we know it, our little guy will be turning a year old! 

In celebration of Luke's first birthday, I'd like to donate some Christmas inspired onesies/footed sleepers and possibly other gifts to the Cleveland Clinic Children's Hospital NICU where Luke spent the first week of his life, which also included his 1st Christmas. 

Luke arrived early.  We had a c-section scheduled for the morning of January 2nd, 2013, however I went into labor during the early morning hours of December 22nd, 2012.  I wasn't well prepared for an early arrival and I spent the first hour breathing through contractions at home while packing mine and Luke's bags.  I did not have anything special for him to wear on Christmas and we ended up with a baseball onesie from the NICU sleeper inventory that morning.  I mean, lets prioritize... we had a beautiful, stable baby and that was the most important, but it just didn't feel right being away from home and especially away from Matthew.  We didn't get to attend the Christmas Eve service at our church nor did we get to wake up to a sparkling Christmas tree.  I can't control those things for other families this year, but I can possibly make a difference with what children admitted over Christmas wear on that special day. 

My goal is to raise $500 in support of purchasing Christmas onesies for babies in the NICU where Luke was born.  We have also contacted Carters to ask for a donation.  Over the next few days, I will also be reaching out to Gymboree's corporate headquarters as well as other baby apparel makers to ask for their support. 

If you feel so inclined, please help me celebrate the gift of Luke by donating money in his name to support our mission!  You can donate via PayPal or credit card on the "Donate" button at the top left hand side of our blog!

If you have other ideas of how we might gain corporate support, please let me know!  Wouldn't it be great if we could extend our goal to include other hospital NICUs and nurseries??

Thank you for your generosity! 

30 September 2013

Luke's 1st Tooth

I tried to get a photo, but our silly boy wouldn't cooperate!

Luke's first tooth finally popped through last night!

Last night he was awake three or four times and was nearly inconsolable. We weren't sure what was going on, but tonight after Luke's bath, Dustin was poking around looking for teeth, found one and yelled for me to "C'mere now!" I was elated to see that Luke's first tooth, the bottom left, had finally come in!

Luke is 9 months, 11 days old!

Teddy Kremer

One word: Awesome!

28 September 2013

Luke Bryan: 2013 Dirt Road Diaries Tour

Last night we splurged.  We had great tickets which placed us in "The Pit", a standing room only section between the stage and the 1st row.  We hired a limo.  We were joined by great friends. There isn't much else to say other than we had a GREAT time!
















25 September 2013

Calling out to my visitor from Wasilla, Alaska

I noticed on my traffic tracker that I had a visitor tonight from Wasilla, Alaska.  The first thing I thought of was Sarah Palin and her son Trig who also has Down syndrome.  Soon after learning that Luke would be born with Down syndrome, we sent an email to family and friends asking for their prayers and support.  The love we received back through probably over 50 emails was completely overwhelming.  Word began to travel.  A few days later I received a phone call from a Jersey breeder who wanted my address.  He wouldn't tell me what he was sending, only that he thought it was meant for me.  A few days later, we received the letter below written by Sarah Palin.  Sarah, I'm sure I couldn't be lucky enough to have had your audience on my blog tonight, but if it was you, please know you that offered me some comfort in the early days of our prenatal diagnosis!

Sarah Palin's Letter To Her Family About Trig 

Written from the Perspective of God


To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):

I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because I only want the best for you!

I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up. Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!

Then, I put the idea in your hearts that his name should be "Trig", because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!

Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palins look forward to birthday celebrations that go on for three, four days... you all really like cake .) I know you, I knew you'd be better off with just a short time to wait!

Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for. At first the news seemed unreal and sad and confusing . But I gave Trig' s mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!

I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that. I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you...

I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.

This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters . The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect". You will grow and be blessed with greater understanding that will be born along with Trig.

Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did. And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.

Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!

Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!

Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family. Many people won't understand... and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make `em all shapes and sizes? Believe me ,, there is no "perfect"!)

Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.

I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts... for as the heavens are higher than the earth, my ways are higher than yours!"

I wrote that all down for you in the Good Book ! Look it up! You claim that you believe me - now it's time to live out that belief!

Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!

Love,
Trig's Creator , Your Heavenly Father

To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):
I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because I only want the best for you!
I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up.
Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!
Then, I put the idea in your hearts that his name should be 'Trig', because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!
Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palmas look forward to birthday celebrations that go on for three, four days_ you all really like cake.) I know you, I knew you'd be better off with just a short time to wait!
Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for.
Sarah Palin and Trig by an Alaskan campfire, 2010 At first the news seemed unreal and sad and confusing. But I gave Trig's mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!
I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that.
I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you... I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.
This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters.
The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect°.
You will grow and be blessed with greater understanding that will he born along with Trig.Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did.
And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for_in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.
Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!
Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!
Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family.
Many people won't understand_ and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make 'em all shapes and sizes? Believe me, there is no "perfect"!)
Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.
I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts- for as the heavens are higher than the earth, my ways are higher than yours!"
I wrote that all down for you in the Good Book! Look it up! You claim that you believe me - now it's time to live out that belief!
Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!
Love,
Trig's Creator, Your Heavenly Father
- See more at: http://latimesblogs.latimes.com/washington/2011/06/sarah-palin-god-letter-trig-down-syndrome.html#sthash.cwZ7NXt4.dpuf
To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):
I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because I only want the best for you!
I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up.
Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!
Then, I put the idea in your hearts that his name should be 'Trig', because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!
Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palmas look forward to birthday celebrations that go on for three, four days_ you all really like cake.) I know you, I knew you'd be better off with just a short time to wait!
Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for.
Sarah Palin and Trig by an Alaskan campfire, 2010 At first the news seemed unreal and sad and confusing. But I gave Trig's mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!
I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that.
I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you... I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.
This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters.
The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect°.
You will grow and be blessed with greater understanding that will he born along with Trig.Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did.
And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for_in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.
Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!
Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!
Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family.
Many people won't understand_ and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make 'em all shapes and sizes? Believe me, there is no "perfect"!)
Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.
I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts- for as the heavens are higher than the earth, my ways are higher than yours!"
I wrote that all down for you in the Good Book! Look it up! You claim that you believe me - now it's time to live out that belief!
Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!
Love,
Trig's Creator, Your Heavenly Father
- See more at: http://latimesblogs.latimes.com/washington/2011/06/sarah-palin-god-letter-trig-down-syndrome.html#sthash.cwZ7NXt4.dpuf
To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):
I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because I only want the best for you!
I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up.
Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!
Then, I put the idea in your hearts that his name should be 'Trig', because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!
Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palmas look forward to birthday celebrations that go on for three, four days_ you all really like cake.) I know you, I knew you'd be better off with just a short time to wait!
Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for.
Sarah Palin and Trig by an Alaskan campfire, 2010 At first the news seemed unreal and sad and confusing. But I gave Trig's mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!
I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that.
I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you... I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.
This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters.
The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect°.
You will grow and be blessed with greater understanding that will he born along with Trig.Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did.
And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for_in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.
Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!
Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!
Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family.
Many people won't understand_ and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make 'em all shapes and sizes? Believe me, there is no "perfect"!)
Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.
I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts- for as the heavens are higher than the earth, my ways are higher than yours!"
I wrote that all down for you in the Good Book! Look it up! You claim that you believe me - now it's time to live out that belief!
Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!
Love,
Trig's Creator, Your Heavenly Father
- See more at: http://latimesblogs.latimes.com/washington/2011/06/sarah-palin-god-letter-trig-down-syndrome.html#sthash.cwZ7NXt4.dpuf
To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):
I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because I only want the best for you!
I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up.
Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!
Then, I put the idea in your hearts that his name should be 'Trig', because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!
Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palmas look forward to birthday celebrations that go on for three, four days_ you all really like cake.) I know you, I knew you'd be better off with just a short time to wait!
Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for.
Sarah Palin and Trig by an Alaskan campfire, 2010 At first the news seemed unreal and sad and confusing. But I gave Trig's mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!
I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that.
I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you... I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.
This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters.
The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect°.
You will grow and be blessed with greater understanding that will he born along with Trig.Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did.
And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for_in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.
Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!
Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!
Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family.
Many people won't understand_ and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make 'em all shapes and sizes? Believe me, there is no "perfect"!)
Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.
I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts- for as the heavens are higher than the earth, my ways are higher than yours!"
I wrote that all down for you in the Good Book! Look it up! You claim that you believe me - now it's time to live out that belief!
Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!
Love,
Trig's Creator, Your Heavenly Father
- See more at: http://latimesblogs.latimes.com/washington/2011/06/sarah-palin-god-letter-trig-down-syndrome.html#sthash.cwZ7NXt4.dpuf

Wordless Wednesday


24 September 2013

22 September 2013

Luke Sitting Unassisted at 9 Months / Matthew Playing Outside

We've been working on lots of skill building during our physical therapy sessions with Luke and one of the milestones we've been working towards is sitting unassisted.  It seemed like it would never happen, but we're finally starting to see some major progress!  Luke will only sit unassisted for a few seconds (maybe 10 seconds max for now), but I'm sure before we know it, he'll be a pro!  Here is him showing off for us today...



And since I couldn't take photos of Luke and not Matthew too, here are some I snapped while he and I were playing outside today.



15 September 2013

Secrest Arboretum - Fall 2013

Last Sunday afternoon, we took advantage of the nice weather and took a little drive over to Secrest Arboretum before meeting some family and friends for dinner.  While we were there, we attempted some photos, however we didn't have 100% cooperation from our little people... it seemed that when one was doing the right thing, the other wasn't and then of course the few times they were in-sync, my camera settings weren't quite right.  We were able to capture a few decent photos, although I'm hoping our next trip is more successful!

When all else fails and you can't get your 2-year old to smile... just start jumping!






14 September 2013

I'm a softie when I'm tired....

There's so much I could write about today, in fact, this morning I had intentions of updating this forum with what's been going on in our lives the last week and  a half.  I got busy however and didn't make it here until now, 10 hours later.... the big stuff that's been on my mind the last few days will have to wait for another time.. In this moment, I want to share an experience from this afternoon...

We've had a busy week and have spent today laying around, recovering from the hours we spent working at our county fair.  When I say we, I mean mostly Dustin.  He was up and in town before I was even awake each morning as I stayed home to get the kids up and off to the sitter.  Then I'd make a trip into town to watch the kids in our 4H club as they exhibited their dairy cattle projects.  As soon as the shows were over, I'd rush home to pick up the kids and would then drive back into town so we could spend the evenings together at the fair with our friends and family.  The weather this week was sweltering (nearing a muggy, humid 100 degrees on Tuesday!) and we are all exhausted!  I promise to dedicate another post soon to the county fair and all of the wonderful memories we made over the last week! 

Today's post is about Luke.  So as I mentioned, we rested today.  We made a large Mexican dinner last night and had plenty leftovers for lunch and dinner today, so there was minimal cooking and/or cleaning that needed completed.  There were mounds of laundry (at least 4 or 5 loads), however since they were clean, all I had to do was fold them today along with about 50 cloth diapers that needed the inserts stuffed into the pockets.  Also, have I mentioned that I'm still in my pajamas?  Early this morning, I did some Photoshop Elements photography editing, but otherwise, it was a pretty slow day... we even had enough time to watch Titanic on Netflix this afternoon.  During Titanic, Luke and I did some of his physical therapy exercises and played on a blanket on the floor.  A little later, Dustin took over with him while I worked on that mountain of laundry.  As the movie was almost over, Luke was waking from a nap on Dustin's shoulder and started to cry... since I was walking by, I picked him up from Dustin's lap and bounced him as I walked into the kitchen.  Eventually he calmed down and fell back asleep.  I walked back into the living room, took a seat on the couch and as we cuddled, he completed melted into me.  His head was on my shoulder and I could hear him breathing in my ear and feel his steam on my neck.  As I held him tightly, I could feel his chest rising against mine as he pulled air into his lungs.  I could also feel his heart thumping.  And that's when it got me.  That beat didn't feel right.  I don't think there was anything clinically wrong with him... no blueness, no shortness of breath, no quick respirations.  I'm generally pretty tough and have learned to be as matter of fact as I can when it comes to medical stuff over the last year or so, so I don't know why I was so soft tonight.  I just got a little weepy thinking about him needing open heart surgery.  I know it has to happen for him to be better, but feeling that little heart beating was just a huge reminder that things aren't "right" inside that precious little body of his.  It hurts me to think about him going through an invasive operation and there is always that little fear that things won't go as planned.... tonight when he had completely surrendered to me as I wrapped him in the warmth of my arms, I felt vulnerable too. 

Dear Heavenly Father, thank you for the blessing you gave our family in the form of our sweet Luke.  Lord, we are working hard to do right by him (and Matthew, too) so we can help them to grow and learn about your love, but we need your help.  Sometimes, it all feels like too much and I can feel the walls closing in around me.  Please give me the gift of strength and be with us as we made decisions for their future and assist us as we navigate through our days on this earth.  In your name we pray, Amen.

02 September 2013

Matthew's 2 Year Old Pictures

Finally!  I've been feeling guilty that I haven't done a mini-shoot for Matthew's 2nd birthday yet.  So although I'm two weeks late, here are a few photos that I took of our big boy earlier this morning!





20 August 2013

Blog Hop

This blog hop is a community project of Down syndrome Blogs and the T21 Alliance. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (above

One Truth
My life is so much better than I imagined it would be the day we received our prenatal diagnosis. I was scared and didn't understand what it meant to be carrying a baby inside my body that was affected by Trisomy 21. I'd never known anyone with Down syndrome and because of that I had the misfortune of not being educated on the topic, but also I was blessed to have an open mind... one free of stereotypes or visual images of who or what my child might be when he was born. When it came time for the delivery, we were excited to meet baby Luke and while we've had a lot to learn since he arrived last December, our life has been remarkably normal. When I say normal, I mean the day to day interactions with him are rewarding. I feel satisfied and fulfilled as his mother. I no longer feel cheated out of the typical child I thought I was expecting on that fateful day. When I see the love that his older brother has for him, the warmth that fills my heart is the most wonderful thing I've ever experienced. And that smile. When he smiles (which isn't every moment like the stereotype would indicate), he absolutely lights up. His smile is infectious. His smile is intoxicating. His smile is addicting. I yearn for his smile and find myself doing some pretty goofy things to encourage one. My ultimate truth - my life is good!

One Tip
Find a local support group. It can be a formal group that meets regularly - I was hooked up with one and felt an instant connection with the regulars who attend. Not all of their children have Down syndrome, but they all do have some sort of special need. The information I've gained about specialists and navigating insurance issues has been invaluable. Bigger than that however has been the emotional support I've received - there is nothing quite like having a face to face conversation when you're sharing something very personal and seeing others brought to tears by your story. On the flip side, feeling that way when you hear another's story helps you to feel like you're not alone on this journey. Additionally, I'm a member of a few secret groups on Facebook for mom's of children with Down syndrome born in 2012 and 2013 and that's been a great experience too, in a different way... I am reassured with Luke's progress because I see photos all the time of other babies his age doing the same stuff he's doing. It helps to level the playing field in my mind. I don't have to compare him to normal babies because I can compare him and his development to babies that are on the same course as him. We can talk about feeding issues, heart issues, physical therapies, etc. Things that my friends in real life will most certainly listen to me talk about, but really when it comes down to it, they have a hard time relating because they just haven't been there. Finally, I have been connected with a few other moms of children with Down syndrome whose children also have the same (or in some cases, more complex) heart defect that Luke has and miracuously, although we are all located in Ohio, we all chose Boston Childrens for open heart surgery and we all will have had the same surgeon (once ours is complete, that is) and the peace of mind they've brought me has been really special. One of the moms in particular lives within about 5 miles of my house and while she and I haven't met yet due to our busy schedules, we've actually spoken on the phone probably about a half dozen times. Support is key to learning, dealing and being set up to best help our children!

One Photo