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Showing posts from 2016

Fed Is Best

I have been loving the tree of life pictures. If you haven't seen them they are typically pictures with the tree over the mother's breast and the child's face while nursing. I have seen some neat pictures with bottles as well. While these pictures are beautiful and I love seeing them, it is hard seeing them as it reminds me of missing out on this experience with Kaleb. Kaleb and I may not have gotten to ever get to this point of him nursing even though I had continued to hold out hope, but I wanted to make my own pictures. A look at what feeding looks like for us and the love and work that goes into each feed.

The first is a picture from one of my last pumps on November 4th. I had made it 14 months and a few days of pumping. Even though I still had 5-6 months worth of breast milk in deep freezers it was a hard moment to look at my supply dwindling and knowing that I was about to end that chapter. The other picture is Kaleb getting breast milk, just in a different way than …

Hey Batter, Batter: A Reflection of Kaleb's First Year at Home

You're not throwing home runs.

This is what my four year old told me while I pitched to him one night after he struck out. I told him I don't throw home runs, home runs are something that you have to hit. To which he informs me in his frustrated tone, "well you're not throwing pitches so I can hit home runs!" 
It made me realize we can often find ourselves whining and complaining to God about this very idea. We want life to pitch it right down the middle of the plate. Better yet, just set it up on a tee for us to smash. We want to know where the pitch is going and that it's going to be a pitch we can hit for a home run that follows with us feeling pretty pleased with ourselves as we comfortably trot around the bases. 
Well on August 26th, 2015 we were thrown a curve ball as our life took a sudden and unexpected turn with Kaleb's early and necessary arrival. Mix that with all of his health issues such as a brain bleed, heart defect, chronic lung di…

Dear Medical Professional

Many parents have had bad experiences when they learned of their child's diagnosis. DSDN is running a campaign this month with#deardoctorletters. I encourage everyone to go and like their page. (This is the organization that has the amazing rockin mom groups). The following is my letter to medical professionals.

Dear medical professional,
I am writing to share my diagnosis story with you. Each parent has their diagnosis story, the time in which Down syndrome became a part of their family, but I have never really discussed mine. Unlike so many fellow parents, I haven’t written to a doctor about our diagnosis story. Many parents have chosen to write either to thank them for the way in which they shared the diagnosis, or has is often told, families writing and asking their doctors to reexamine the manner in which they share this type of news to other families in the future. The reason I haven’t written before is because my diagnosis story wasn’t much of one and didn’t fit neatly into …

Happy birthday: I Love You Stinky Face

Happy birthday Kaleb! Every birthday a person experiences is special but I'm not sure one has held so much significance for me as your first birthday. In some ways I feel that it is my own, since it signifies the beginning of my own transformation.

I think back to this past year filled with all the tears, heartaches, prayers, cuddles, hope, and love. I am reminded of our bedtime story, I Love You Stinky Face. I read it to you each night while you sit on my lap nestled against me. Yes, it's the one that you try to hold and turn the pages while I'm still reading. At least once or twice during the story you will turn your little head to watch me with your big beautiful eyes as I read.
I love that book. It's a very cute story. The other night while rocking you and giving you a few extra cuddles I read the back of the book. The back of the book speaks to the unconditional love of a mother. In the book the mother's love is tested. This year has tested us but I hope you h…

Footprints

There is the saying "walk a mile in their shoes." You all have walked many miles with us this past year. Through the 10,000 miles added to our car as we went through the NICU journey, to the many miles of specialists, therapy, open heart surgery, and various other appiointments. You also traveled with us through the miles that weren't logged as we were essentially home bound with Kaleb's compromised immune system and medical equipment. This first picture was taken August 31st last year as we headed out the door to Tulsa. I had simply taken the picture to show my mom that after five days of bed rest my swelling was down and I could finally wear shoes after weeks of nothing but flip flops that dug into my feet. Little did I know how symbolic this picture was. It represented the starting line of our journey. 

Later that day my feet would walk into the room at the fetal maternal specialist's office to have a 45 minute ultrasound that would show that the blood flow had…

August 26th

August 26th, this day has significant meaning to me and my family. A year ago today is when this whole roller coaster ride began. It is hard to believe that it has been a full year now since we first heard the words, “very small preemie,” “heart defect,” “IUGR,” and “Down syndrome.” In some ways I feel as if it were yesterday as I can easily recall even the simplest details of the day as I have played them in my mind so many times. In other ways it feels as if I have lived a lifetime since that day.
For some it may not be the most interesting post I’ve ever written but I’ve told people that at some point I would share the story of that day and the upcoming week. It can be tough as I relive those memories and the feelings that accompany them. It is also very therapeutic as I write them and see the journey we have made it through by His love and grace. So the following are my memories of that day.
On Wednesday, August 26th, TJ and I headed to Tulsa for a routine checkup where I would ge…

The Difference a Year Makes

I stood in church Sunday morning holding Kaleb as the worship team began. I stood there singing along with them as he laid his head against my chest and placed his little hand in my own. I couldn't believe how full my heart was, how in love I was with this little boy in my arms. While I was savoring the moment TJ  leaned over to me and motioned to one of the worship leaders and asked, "is she the one?" I knew exactly what he was asking and I looked. Sure enough she was. I was suddenly transported back to another church service, one that happened eleven months ago. 
A week and a half after having Kaleb we went to church before heading to the NICU. While there this lady began leading worship. I became angry. I had already held myself together as I passed pregnant women or mothers with their little babies. Then the worship team began playing. I had watched this lady as she began to sing. That is when the anger and frustration hit. I could just picture her, this beautiful lad…

My letter to Alex Gordon

Alex,

I wanted to share a few pictures with you that show why I'm writing to thank you. You see my three year old, Kaden, knows more about baseball and the Royals than many adults I know. He loves as he would put it "all of the Royals" but without a doubt, without any hesitation when asked who is his favorite player is his answer is always one player; you. 

I'm not kidding when I say Gordo was one of his first words. In fact anything baseball for the longest time was called Gordo. I'm not exactly sure why he took such a liking to you. I joke it's because his first ever game at the K and you hit a grand slam when he was not even a year old. For what ever reason he adores you. He even has a little Gordo plush doll that he likes to take everywhere. 
This past year has been the toughest year for our family. Our second son, Kaleb, was born 12 weeks early at 2lb 2oz. We also learned of his diagnosis of Down syndrome two days after his birth. He spent 99 days in the…

Even Now

People sometimes joke about kids or spouses saying I guess I'll keep them, there is no returning them now or the return time has expired. What if they weren't true, what if we could go back in time and decide a different path. Would we still make the same decisions? 
If I could turn back time to that day nine years ago as I walked down the aisle on my fathers arm would I still stroll to the front of the church ready to pledge my life and love to you? Sure we were two young kids in love but really we had no idea what life would bring. Within the past nine years we have dealt with loss of job, foreclosure, and miscarriages. We have faced personal and professional disappointments, changed plans, and lost dreams. Not to mention this past year a very premature birth, extended NICU stay, diagnosis of Down syndrome, and heart surgery. Over the past nine years at times I'm sure one or both of us has wanted out. With all of that people would might wonder why in the world if given th…

Education: Letting Every Child See The Light

This is a different post than I typically share. This is actually a short journal entry I shared for my current course. Yes, I am back in classes pursing my PhD and yes, I need there to be more hours in the day. Thought I'd share since my thoughts are constantly drifting to both of my boys. 



The hardest thing about my son’s diagnosis to accept was the cognitive side of Down syndrome. It is not easy to swallow the words mental retardation that accompany the diagnosis. Especially for a person who has spent her life believing that people have ability and it simply comes down to the ability to apply one’s self. To realize that the future and the potential for Kaleb is unknown is scary. Still it is hard not to allow children with special needs like my Kaleb to penetrate my thoughts as I read the different theories on the purpose and philosophy of education. To examine what does education mean for children like Kaleb? Things such as Aristotle’s view that everything continues to changes a…

May I Have This Dance

As I spin you in my arms dancing around the living room I look at your beautiful face and you look up smiling at me. It's such a sweet moment, the kind of moment that you want to bottle up and keep forever. As we dance I watch your tiny little hand rest in mine and I lean my head against yours. As we dance I think of dancing with you as you grow throughout the years. Dances with you on my feet while I lead and then dances as you get older and you lead. My train of thought continues drifting the years of your life until the thought of dancing with you at your wedding plays in my mind. That sweet moment I had been enjoying is interrupted and is replaced with frustration and heart ache. You see my precious child I love you so much and it pains me whenever I have a thought and then begin to wonder if you will ever get to experience it. 
Then almost as quickly as the frustration and heart ache appears it disappears and is replaced with feelings of irritation at myself. I work to be to a…

More To The Picture Than Meets The Eye

Well it finally happened. The other day I had a first that I knew would eventually happen, it was just a matter of time. While leaving an appointment a gentlemen in the elevator with us looked over at Kaleb and I watched the recognition in his face which followed with, “Oh, bless you guys.” Even though I knew something like this would eventually happen I was left unsure of how to respond. Part of the gentleman’s statement might have been geared towards the oxygen and monitor with Kaleb. Which depending on the extent of his knowledge could have even been part of what he meant, knowing that those with Trisomy 21 are more prone to health issues and are evident with Kaleb’s extra accessories. Which in reality the oxygen and monitor have more to do with his very premature birth having been born at 28 weeks then with Down syndrome. We don’t always go into the full birth story, NICU stay, and medical file which are all a part of Kaleb’s story with every person we meet. I really do not believ…

Six Months Later

Kaleb is six months old today. As many parents will say, I can’t believe it’s already been six months. Now that half a year has passed since that week at the end of August and Kaleb’s birth on September 1st, I’ve found myself looking back at that time. I admit it’s not hard that period seems as if every detail and moment is etched forever in my memory.
I admit tonight has been a little bit rough. Kaleb has been a little fussy and requiring a few more extra cuddles than usual. While it may be tough with a three year old who also wants his Momma and TJ on his way back from a golf tournament. I find myself while having to keep from getting frustrated also comparing the difference six months can make. 
Six months ago Kaleb’s future was very uncertain. Since hearing that we would be having a very small preemie we had no idea what to expect. I feared for my son. My heart was battling conflicting emotions. As they wheeled me into the operating room I kept my hands on my belly not ready to not …