Sunday, December 18, 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 most.

Breast or formula there is a hot topic that comes up in every mommy group I have ever been a part of, it is a controversial topic with both sides often getting defensive. So there is the saying fed is best. I like this and believe that for tubie babies this saying, fed is best, brings on a brand new meaning. 

For my fellow pumping mommas who for one reason or another are unable to nurse or those that do to work find themselves pumping; I applaud you. It's a pain, literally. I know what it's like to tirelessly hook up to a machine to provide breast milk for your baby. Spending hours with a machine instead of your baby, Instead of when you get up in the middle of the night to cuddle and nurse your baby and caress their cheek you hook up to a machine and play on your phone, possibly staring at a picture of your baby and caress the screen as you work to remember why you continue to pump. You continue to wash and sanitize pump parts, you log your pumps, calculate milk output, carefully label storage bags, and set up alarm reminders for your next pump. All of this for a child who won't remember this commitment and dedication. Know that we see you. Fellow pumping mommas we know what it's like, we've been there.

For tube fed mommas, it can be tough to hook up for feeds whether from gravity feeds or a pump. It can be tough when you see pictures of mothers cuddling while they nurse or give their baby a bottle, while feeding for you can be a wrestling match while you keep them still, make sure the tube isn't kinked, and every other detail that goes into a feed. It can be tough when you begin to get looks when you are out and it's time to feed. It can be tough when well meaning individuals ask how long until they can drink from a bottle or cup.Know that we see you. We see you provide for your child and learn a new way to feed your child, a way you never expected.

So mommas keep those tree of life pictures are coming but remember whether breast, bottle, or tube; fed is best. 

Saturday, December 10, 2016

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 disease, and Down syndrome.

Then a year ago on December 9th, 2015, we brought Kaleb home from the NICU. It was a long awaited home run that brought tears to our eyes as we trotted the bases, or more accurately as we wheeled Kaleb from the NICU. Leaving the NICU though was like getting thrown a change up. For those that are not baseball fans, a change up is a slow pitch that throws the batters off of their game as they were expecting a faster pitch. 

The NICU journey was ending but another chapter with its own challenges was just beginning. I say it was a change up pitch for a few reasons. We were definitely slower at getting ready and doing our day to day tasks as we juggled monitors and oxygen and learned to take care of him without a NICU staff and 24 hour care. It took only two hours of being home for us to realize this as we tried to undress him and get him ready for bed with cords everywhere. Or I could mention the next day as it took two of us to gather everything, get him ready, loaded up, and to his pediatrician. Where we proceeded to look like amateurs and drop his oxygen. 

Soon we were able to take that pitch and turn it into a double as we could be found going to and from appointments with monitors, oxygen, diaper bag, and medical file handled like a pro. All the while administering a feed through his g tube while pushing his stroller to his appointment. Have to admit I was pretty proud of that hit, the kind that can make you feel like super mom.

It was another change up as it was slow going coming off of the medical equipment. Leaving the NICU didn't mean leaving the equipment behind. Little by little the amount of oxygen was decreased and then dropped from days and then finally dropped completely. The amount of equipment and medication needed continued to get smaller, until we were left with a g tube. It took longer than we hoped it would but in the process we learned and managed. We learned to care for his needs, and it gave us a better respect for others who have been both parent and nurse for their child. 

Down syndrome is also a change up from a typical child. Those with Down syndrome will get there, but growing and hitting milestones is just at a slower pace. Some parents brag about how quickly or easily their child picked up a skill. For parents of children with Down syndrome, it's often not quick or easy. It has to be taught, practiced, and done in the child's own time. It can be trying, especially on bad days. However, it makes every milestone no matter how small that much bigger a celebration. While we still wait on some milestones such as crawling or his first words, there has been great joy (and often happy tears) that accompany the milestones accomplished. 

There were times in the past year like open heart surgery that felt like I was one out and one strike away from defeat. That wasn't the only time I had to battle in the batter's box as it felt that I fouled off strike after strike. Those were the times I was grateful that when it simply was not my night, that I had great teammates. Just like baseball, life is not a one man show. It's a group effort and while we celebrate the first year of Kaleb being home. I also celebrate my team; my husband, oldest son, both sets of grandparents, and all of our other family and friends who continue to step up and be a part. Not only have we seen Kaleb grow and learn but the same can be said for our family and our marriage.

Finally, it has drawn me closer to my swing coach. Ephesians talks about putting on the full armor of God. In baseball you don't necessarily go into the batter's box with a shield or a sword. However, with faith and His word I can go up to the plate and be sure of my swing. I'm sure life will continue to deliver pitch after pitch and paint the corners of the strike zone, always keeping us on toes. However, I can rest in the knowledge that God is painting a much bigger and brighter picture than I could have ever imagined and with His help I can be confident as I step up to the plate. 

One year at home down. On to the next chapter and pitch... Batter up! 

Monday, October 10, 2016

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 #deardoctor letters. 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 either one of those categories.  

My story is a little bit different than most as mine took place after my son was born. Two days after my son’s premature birth, I joined my son’s neonatologist on the couch in his NICU room and listened as she gave a report on his health. It had been a whirlwind 48 hours with him arriving 12 weeks before his due date, weighing 2lb 2oz, housed in the NICU, connected to monitors and machines, and having a heart defect. While that is a lot to take in in a 48 hour window, he had been holding stable, so I was managing to hold myself together as well. While sitting on the couch hearing her run through his medial information she threw it out there in between information on his blood sugar and blood pressure numbers. In between all of his numbers and information she said “the results came back and he tested positive for Trisomy 21” and kept right with giving the rest of the report.

For a while I hated how she just threw it out there while I sat in his NICU room by myself. While I will gladly share just how much I love my son and how much he completes our family, this is not news parents are typically anxious to receive. Now looking back at that time, I’m not exactly sure what I would have wanted. I remember feeling as if her announcement did not match up to the major life altering news that she delivered. Now I’m not sure what I was expecting, did I want a drum roll or dramatic movie music? Now a year removed I am very appreciative of her approach. In telling me the way she did she showed me just where she ranked this diagnosis; right there between his all of his other medical notes. It is part of his medical file and not who he is. She did not follow up the statement with an apology or pity. She didn’t pause and say, “I’m sorry to tell you but…” She simply threw it out there between his blood sugar and blood pressure.

In fact only when she saw the quiet tears streaming down my face did she pause and ask what was wrong. I explained how it was a shock to hear this news thrown in the middle of his usual health update and how it was a lot to process. While in reality at that moment I wanted to tell her how she with that statement shifted my world. I then proceeded to say to myself as much as her, “now what?” To which she looked at me as if she was having a hard time understanding my concern and said “we treat him just like any other baby.” Her answer spoke volumes. In her way she was also saying, we love him just like any other baby, and I watched her do just that as she came into his room each time.

While I struggled to wrap my head around this new life that was to be ours she set the stage. The neonatologist’s statement of, “we treat him just like any other baby,” often goes through my head. She taught me so many lessons with those eight words. She taught me acceptance. She taught me to look beyond this note in his medical file. She also taught me to advocate for my son as she was doing while I, his mother, worked to process the news.

So medical professional, whether you are a genetic counselor, an OB-GYN, neonatologist, or other professional who might give this type of news to a family, I hope you understand the role you will now play in their family story. They might not ever remember your name, but I promise they will remember in great detail what you say and how you respond. Whether this news is given as a prenatal diagnosis or birth diagnosis, this news will be a lot to process. Please understand the significance of your role and that you are setting the stage. I would encourage you to remember the neonatologist’s words to me; “We treat him just like any other baby.” That baby lovingly tucked in their mother’s womb is just like any other baby. That baby is still a miracle just like any other baby. That mother has had hopes and dreams for that baby since two lines first appeared on the pregnancy test just like any other baby. 

I ask that you please treat this news with the kindness, assurance, and hope that would be afforded to mothers, just like any other baby.  My son’s diagnosis came in-between blood sugar and blood pressure numbers and that is where it fits; as part of his story and not his whole story. He has a quite a story. One that is filled with love, laughter, and hope; just like any other baby.

Sincerely,

Amanda 

Thursday, September 1, 2016

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 have always felt reassured of my love for you. It also mentions that the illustrations with their calm colors and pictures can make the scary stuff seem not so scary. I can vouch that you made what would seem scary and down right impossible, seem not so scary.  So while I read I must admit a revised version comes to mind, our own special version of the book...


"I love you, my wonderful child," said momma as she tucked me in. But I had a question.

But momma what if I was born a very tiny preemie?  Would you still love me then?

"If you were a very tiny preemie, I would sit by your side so you wouldn't be alone. I would begin to learn the language of the NICU so I could better understand your needs and I would say, 'I love you my very tiny preemie.'"

But momma, but momma, what if I was connected to monitors and had to live in the NICU instead of going home with you and Daddy?

"My heart would be very sad and look forward to bringing you home but I would come spend each day with you in your temporary home. And if you came with monitors I wouldn't mind, I would learn to handle all of those monitors as I pick you up and hold you tight and whisper, 'I love you my precious NICU baby.' "

But momma, but momma, what if I came with a diagnosis of Down syndrome and an extra chromosome that you hadn't expected. And that extra chromosome meant I would learn things in my own time and way? 

That extra chromosome might catch us off guard but we would work to figure out this journey together. As you show us life from a different perspective I would work to be the mother you need and make sure you have every possible opportunity. That chromosome would only confirm what I already knew; that you are simply extra special and uniquely you, and I would say, 'I love you my Down right perfect child.' "

But momma, what if when I did come home I came with oxygen and monitors and even ate my food through a tube in my stomach? 

"Then I would give your breastmilk through a tube if that is what you needed. And I would learn to handle your monitors and oxygen needs as that is what you need to grow big and strong. And I would lay you in your crib and say, 'I love you my sweet baby, accessories and all.' "


But momma, but momma, what if I had to have heart surgery that made you feel as if your heart was the one that would break? 

"Then I would hold you tight until it was time to hand you over to your medical team. I would be worried sick but I would let my heart break if that meant yours would be fixed. And afterwards I would say, 'I love you my little heart warrior.' " 


But momma, but momma, what if my future was a scary unknown that sometimes makes you cry with worry?

"Then I would look right into your eyes and say, 'I love you my child.' Because my child you are more than your medical file. You are my child, and every life is a big scary unknown. That is why we take it one day at a time and enjoy what we have today."

But momma what if my first year made your heart have cracks in it from breaking in ways you never thought possible? 

"My dear, those cracks are not really cracks at all, but rather stretch marks from where my heart would grow in ways I never thought possible. Those stretch marks would be created from new found love and respect for your daddy and brother, medical professionals, fellow parents, and you. Sure it would feel at times as if it were breaking but I would gain a lot more than I originally perceived as lost. I would kiss your chubby cheeks and say, 'I love you my mighty miracle.' "


Today I am so happy to celebrate your birthday and the first year of your life. You did it Kaleb. 

I love you my wonderful child. Happy first birthday. 

(Inspired by I Love You Stinky Face by Lisa McCourt)

Wednesday, August 31, 2016

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 indeed, sometime between Wednesday afternoon to Monday afternoon, gone from absent to reverse blood flow which now put us on the clock and Kaleb had an unknown amount of time. After being hooked up to a non stress test Dr. Jones came to tell us we could go home back a bag and report to the hospital first thing in the morning. Before he could leave the room we all listened as Kaleb's clear, steady heart beat dropped. We all turned and watched the reading. No one said a word and we didn't have to be told that this changed the plan. As soon as it picked back up with its steady pace we were told labor and delivery would be expecting us and TJ was not to leave to go get our hospital bags as with him already being in distress he might have to be delivered anytime. 

My feet then found themselves walking the hallways of the south entrance to labor and delivery. My feet wanted to slow as it hit me that I no matter what happened I would not be leaving here pregnant. I lovingly put a hand on my stomach as I walked and tried to commit that moment of him still inside me to memory as I didn't know how much longer he would stay that way. 

We were sent to the waiting area to wait as they finished readying a room. Finally after 35 minutes and my feet tapping impatiently I told TJ I was about to lose my mind having no way of knowing how Kaleb was doing. The memory of listening and seeing evidence of his heart rate plummeting kept replaying in my mind. He went to inquire on the progress and was told they were just about ready and sure enough before he could sit back down nurse Amy came to get us. 


Now a year later here I am leaving the house to head to Tulsa. This time to take Kaleb to therapy and celebrate his first birthday with the NICU staff. I will walk the hallways of the hospital that now are very familiar to me. I will see people who a year ago I had never met but have the upmost respect for. The other picture is today. I may look the same, I am even wearing the same shoes, but I am different. 

I am reminded of the poem Footprints in the Sand. Where there were one set instead of two it wasn't that He left us to go through it alone, it was where He had carried us through. If I were to look back at the past year, I would see one set where He carried us and led us through but also in my view there would also be many other sets of footprints right beside and right behind us. Those are the footprints of all of you. Never have I been so sure of God's love and grace as I have been this year. I am also so very thankful for the love and support along the way from the many people who have willingly shared in this journey with us. Thank you. 


Friday, August 26, 2016

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 get more ultrasound pictures and begin scheduling the more frequent visits that mark the third trimester. I was officially 28 weeks along that day. I was dreading drinking the awful drink that every pregnant lady dreads when it's time to test the blood glucose level for gestational diabetes. This visit had originally been scheduled for the previous Wednesday but the doctor had to reschedule so while I got to put off my glucose test one week I was ready to see how our little boy we had decided to name Kaleb was doing.

As we got into Tulsa and drove by Saint Francis South where Kaden had been born we commented that we would be getting admitted there before we knew it and began talking about how fast the pregnancy was going and wondering how labor would go this time. I joked that I had a feeling this one was going to be ornery and I could see him coming early unlike his brother.

 As usual despite our best intentions we had to hurry in so that we would check in on time for appointment. Of course there was a line and even though it was our fault we were cutting it close I became antsy in my game of beat the clock. Only to find out that my doctor had been called out for two deliveries. I was to be seen by the physicians assistant instead. I was fine with that, I liked Megan and it was just a typical visit and ultrasound. It did make me remember the last time I had her for an appointment which was when I came in when I was experiencing my first miscarriage. She had been the one to tell me it wouldn't be a viable pregnancy but I worked now to shake the memory from my mind.

We quickly got called back and led to an exam room. Dr. Rapp was just on his way out for the two deliveries and popped his head in to say hi and that he’d see us in three weeks. After having the lab draw and going back to the exam room the Megan came in to perform my ultrasound. Instead of small talk about Kaleb or the reassurances that everything was looking good, it quickly became apparent something was wrong. It began by her asking my due date as she thought maybe she had the wrong due date. Flashbacks to the last time I saw her as she performed the ultrasound and asked me if I was sure of how far along I should be as it wasn’t measuring up. My heart began to accelerate as she tried to calmly tell me she was going to remeasure him. After performing the various measurements she admitted he was measuring two to three weeks behind his due date.

The baby that had at every appointment measured right on track for his due date was all of a sudden two to three weeks behind. I quickly realized that five weeks ago he measured typical for his due date had not grown very much at all in the five weeks since. I began to fear for my baby as she worked to keep a poker face in place as she explained that she would be taking a look at the blood flow. While she worked to hold the poker face you could tell it wasn’t looking good either. She soon confirmed my fears as she left the room to go call Dr. Rapp and discuss with another doctor in the practice.

She was only gone about five minutes but in those five minutes I had to work to keep it together. I had never been one for panic attacks but I felt as if I was on the verge of panicking and losing control and I tried to will her back to the room and give us some answers. TJ and I both sat in shocked silence and we realized our carefree day had suddenly taken a different tone. When she did appear she didn’t give us many answers except to tell us that we needed to head to Saint Francis hospital and be admitted for monitoring. While I worked to hold my emotions together TJ went into problem solving mode as he hurried to the car already on the phone making arrangements for Kaden who was still in Bartlesville at daycare. I told him I need to go to the restroom before leaving, primarily to give myself a minute to collect myself and gear up for whatever lay ahead. As I made my way out of the restroom Megan was waiting for me at the door. “There’s been a change in plans. Dr. Jones is waiting for you at his office. You are to head straight over there,” she said with tears in her eyes.

We didn’t know what to say during the few miles to the fetal maternal specialist office. The lightheartedness of the afternoon had suddenly been replaced by a fear that gripped both of us. I was trying hard to not think about the text messages that had already dinged on my phone from my mother asking how my appointment had gone.  

We found our way up to our now second appointment of the day. While I filled out paperwork TJ call one of our closest friends, Dalton, and asked him to pick up Kaden and take him to their house. When Dalton asked what was going on I could hear TJ getting choked up and saying, “I can’t talk right now, but pray.”

We were led to an ultrasound room where we had a 35 minute ultrasound. An ultrasound that I couldn’t wait to be over so we could find out what was going on but at the same time didn't want to end because as long as I was getting the ultrasound and I could see him moving and could see his heart beating on the screen I felt that he had to be okay. I stared at his heart watching each beat on the screen wishing I knew what they were looking for. I tried my best to make out each feature and would quickly try to read anything she typed. I ran through in my head the little bit of knowledge that we had been given and wondered what they meant for our baby and our future.

After the ultrasound we were led to a room to await the doctor. We were both tired of waiting for answers. Luckily the doctor quickly came in. He wasted no time with small talk and began by telling us that Kaleb had a heart defect. He believed it to be a full AV canal defect and he would continue to monitor it. That if it were a full AV canal defect it would require open heart surgery. He then went on to say that this meant he had an increased chance of being born with Down syndrome as this type of defect is very common in children with Down syndrome. As if that wasn't enough to try and take in telling us that we would be having a very small preemie. He then began to throw out terms such as blood flow and IUGR. He explained the difference between absent blood flow and reverse blood flow. I was having absent blood flow IUGR which meant that blood was not flowing through the umbilical cord as it should so it wasn’t allowing him to grow and develop. We would be monitoring to see if it became reverse blood flow which is what Tulsa Women’s Health Care believed was happening when they sent me over. Reverse blood flow would put us on the clock as it would cause fetal death within a number of days.

We would be having a preemie, it was now just a matter of when. It was a balancing act of when it was more beneficial to stay in the womb vs when it became to detrimental. I was now to be doing what I could to help develop him as much as possible before they had to take him. My job at that moment on was to lay on either side to allow optimal blood flow. Only getting up for bathroom breaks and a shower a day. I would have to be monitored twice a week until they determined it was time to deliver. I was to be monitored this frequent due to the blood flow that could turn to reverse blood flow therefore putting us on the clock as well as the fact that he was already so far behind now and by their best measurements was only appearing to weigh 1lb 13oz. I was told that I would get the first round of a two shot set of steroids that day to try to help give him a better chance. We were to return the next day to take the MaterniT21 test and get the second steroid shot.

We headed home in a state of shock. Gone was the lighthearted conversation that had filled the car on the way to Tulsa. Gone was the life we had known before. It seemed ironic that just hours before we had been guessing at when Kaleb would decide to make his appearance. Now we were simply hoping we would take home a baby at the end of this.

In truth we still didn’t feel as if we had a good grasp of what was going on. All of a sudden many new medical terms had been hurled our way and we couldn’t yet grasp their meaning or significance. We continued to drive back home to Bartlesville and to go pick up our two year old. With not knowing what the future held for Kaleb I was suddenly very ready to hold Kaden in my arms. I felt I needed to physically hold one at least one of my sons and feel his closeness, to see that he was safe. As we drove we would go back and forth between speechless, nervous chatter, and preparing a plan of attack.

We pulled into our close friends, Courtney and Dalton’s drive way where Kaden was busy playing with their son, Carter. It was a relieve knowing that while our world felt like it had been rocked today that it had yet to affect Kaden and to him it was simply a chance to go to Carter’s hours to play. Of course there was no escaping Dalton and Courtney who still had no idea what was going on.
I tried to sort out my thoughts and figure out how to explain what was going on when I still didn’t quite understand. I explained that with the type of heart defect that he had that it was common with children with Down syndrome so that meant he had a higher chance of having Down syndrome. While that was part of today’s story the more pressing matter was the blood flow. When TJ and Dalton got back with food everyone seemed to remember I was now to be doing my part of developing Kaleb and was to be laying on my side. So it began, the independent always busy person had to let that go and be still in hopes that I was doing everything in my power to give Kaleb a fighting chance. 

Thursday, August 18, 2016

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 lady with her beautiful life. As I said in a previous post, I could picture her beautiful family in their beautiful house which held their beautiful family pictures. My eyes had filled with tears as I experienced this anger. That was suppose to be my life. Now 11 months later my eyes filled with tears as I remembered that moment in time and my feelings that had accompanied that moment. Now here I was, once again listening to this beautiful lady with her beautiful voice but this time it was different, I was different. 

I always love listening to my coworker, Dr. Josh McNall, but that day he couldn't have brought a more perfectly timed message. I wouldn't ever do it justice if I were to try and talk about and summarize it all. In short he spoke about not wasting our trials. That has been my prayer the past year. While I might not understand why this is the story that God has given me, my prayer is that he use this, that he use me, to bring Him glory. 

Then Josh went to his next slide which read, "we finish well when we learn to LOVE and LIVE WITHIN the story God has given us, instead of the one we might have written." I once again thought back to the lady on the worship team and the difference a year can make. I hadn't even noticed her today as I worshipped,  when it was not quite a year ago that I had been beyond angry and hurt as I listened to her. I couldn't believe that God had completely changed the story I had penciled in for my life. Oh how I had desperately wanted to cling to the life I had planned. As I have said before, the past year has been a daily battle and has served as a reminder for me to let go. To let go of my sense of control, to let go of my plan for my life. This year has included hospitalizations, surgeries, team of doctors, home medical equipment, countless doctor appointments, and extra chromosomes. Through all of that I have learned there is freedom in the letting go. I have learned how limiting my story was. He has written a story that definitely has much more trials and heartache than I would ever willingly include. However, he also includes more possibilities, hope, and overwhelming love than I could ever imagine and therefore could not have written on my own. He has included many supporting characters within the story. I couldn't begin to name the individuals who have leant a helping hand, an ear to listen, or shoulder to cry on. So many have played a part to us being where we are today. I think of each meal provided, each gas card, all of the notes/cards/messages of encouragement, and all of the prayers that have been said for our family. Even the lady singing worship who has no idea the role she has played in all of this. 

Kaleb's heart might have been the one to have open heart surgery to correct his AVSD, but it was my heart that has been transformed this year. Kaleb may wear the visible scar from his procedure but my goal is that my life and my actions shows the evidence of mine. 

As we draw to the year anniversary of this crazy story rewrite my anger is gone. It has been replaced with the love I have for my family. Far from perfect and not what many would consider beautiful. My family and life story are beautiful. So I will sit in my house with my beautiful family surrounded by our beautiful family pictures that display a life story far from what I could have imagined and written for myself. 


"And not a tear is wasted, in time you'll understand. I'm making beauty from the ashes, your life is in my hands." -Just Be Held by Casting Crowns

"This is my story, this is my song. Praising my Savior all the day long." -Blessed Assurance 


Friday, June 24, 2016

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 NICU and then came home with oxygen and monitors. Since coming home with the NICU he has also had a heart cath and open heart surgery. As parents we have felt bad for the toll the past year has taken on Kaden. The time that has been spent in hospitals has taken away from Kaden. To talk to him you wouldn't know it, and he is just happy his little brother he loves so much is now much better. He is already very protective of him. So I admit we have attempted to cater to him a little bit more this summer in attempts to make it special and thank him for being such a trooper.

When we made our annual trip to Kansas City he already knew he wouldn't see you play. He was devastated the day I had to tell him you had gone on the DL. So when we learned you would be going to the Naturals for a few games we decided to drive the two and a half hours to let him watch you play. You wouldn't believe how excited he was! He held his little fists over his head smiling ear to ear as you rounded the bases after your homerun (which he watched up close from behind the on deck circle). He watched your every move while you were in the dugout or when you were on deck. His night was made in the 9th when you said "hey buddy" when he said hi Gordo. We even waited after hoping we could get you to sign his first ever Gordon jersey he owned. 


While I had left to put our youngest in the car TJ said he was so proud of him as he watched him hand you his jersey and say please. Then as he remembered to say thank you after. (We have been working on being respectful and saying please and thank you). TJ then told me you even took a picture with him. When I looked at the picture on the way home tears came to my eyes, to see the look of admiration on my son's face standing there looking up at you. You have no idea how thankful I am to you for taking the time for a young fan. As a parent of little boys yourself I'm sure you understand the feelings we experience as we watch our little boys grow and become men. Thank you for being such a great role model for my son. Ha, even though now I'm having to explain to him the next time we go to Kansas City to watch the Royals he won't personally see you. To which he says, "Why? Gordo likes me." 


Thank you. I will always treasure that picture. Not because it's with a World Series champion, all-star, and gold glover (even though that's pretty amazing). But because of the look on my son's face and all that it represents. That picture represents Kaden's last couple of years of admiring you. The kid's third birthday party was a Royals themed or as he called it a Gordo party. It represents all of his crashes into every wall/fence/couch/etc "catching the ball" or putting his glove on his head trying to be like you.  It represents his love of the game and the love a little boy has for his hero. 

Thank you. 

Sincerely, 
A very grateful mother 
(Amanda)

Wednesday, May 18, 2016

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 the chance would we ever make that same choice. 

But to undo all of that would also be to undo a million laughs, shared dreams, conquered battles, and shared battle scars. It would be to erase our life's best achievements of Kaden and Kaleb. It would be to take away our home which yes, shows the signs of unfinished projects, but it's ours. It would be the undo all of the crazy arguments that really most of the time are trivial and we laugh about later. It would be to lose each other's family that have become as much a part of us as the family we were born into. It would be to miss out on games of rock, paper, scissors to see who is going to have to wipe a butt or change a dirty diaper. It would be to lose out on something closer than even the term best friend can begin to cover. 

We could have done without all of the hurt, pain, and chaos that this world can cause but to do would change our story. For each twist is our story, and one we get to write together. Nine years ago today we had no idea what that story entailed. 

I think about what is engraved inside the band of your wedding ring. Even now. I got the idea from a Karen Kingsbury book. It serves as a reminder that even now I love you. Even now after nine years of life I love you, I choose you. 

So yes if I could go back in time I would still make that journey down the aisle. Once there I would perhaps hold onto your hands just a little bit tighter, I would stare into yours eyes as I picture our future, antsy to begin the life which is about to be ours and fervently say, "I do." 

Tuesday, May 17, 2016

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 as it works and moves towards what it was intended to become (Cathorn, 2002). These ideas begin to take on new meaning as I wonder if this holds true with Down syndrome. It can be enough on a bad day to make you want to question the verse, ‘fearfully and wonderfully made,’ (Psalms 139:14).

So I began to look at the readings from the sense of how am I to educate Kaleb, be an advocate for him, and educate others on how to educate him. Hinchey (2008) spends time explaining much of what we do is rooted in our beliefs, meaning it is because that is how it has always been done. She explains, ‘What we do usually has its roots in what we believe, and beliefs are not the unshakable foundation for action we usually assume,’ (p. 2). The past belief was that those with Down syndrome were unable to learn. Current day individuals with Down syndrome show that this isn’t true, especially with the aid of early intervention. Children with Down syndrome do not historically test well in IQ tests so they are labeled with anywhere from mild to severe cognitive delays. Now that we are constantly seeing that they can and do learn. So now we have to examine how do we teach, and should they use the same methods and have the same goals as that of other typical children? I love where Hinchey talks about that through the lens of critical theory we are able to refocus our vision and it allows us to open our minds to possibilities once found unfathomable. Merleau-Ponty is referenced as explaining that true philosophy is about relearning how we look at the world (Feinberg, n.a.). 

It makes me go back to Plato’s views of sight and the light. Plato explained that sight might exist, that colors, shapes, and patterns be present but one main component to put it altogether is critical for without it the sight will see nothing and everything present will go unseen. This component is light. Plato later goes on to say that education takes for granted that the sight is there, that it already exists. Its goal is to simply redirect it by adding the light. Sure, educators, parents, therapists, and doctors may have to find alternative methods of redirecting so that the light shines and the sight is able to see the beautiful colors, vibrant patterns, and various shapes. It is all about finding methods that work for each child. While we might not execute it very effectively in education, most would acknowledge that education is not a one size fits all. It is about finding what works for each child; what learning styles work best, how to incorporate the various levels of thinking and application, and which teaching style are best to utilize and when.

Those such as Lawrence as referenced by Standish (2005) believe that education is to lead the individual to reaching his or her true fullness. I find myself wondering if they hold true to their beliefs if it is someone besides a typical developing individual. Perhaps they might hold more to Neill’s view referenced by Standish which believe that the purpose of education is to make people happier, more secure, and less prejudiced. Even if a person has trouble swallowing that those same principles apply I would say that perhaps it is because they see the main goal of education as being of the purpose to serve the economy. I would then challenge them that if that is the case the same would hold true for someone with Down syndrome. If the sole purpose and philosophy of education is to prepare individuals to be productive members of society then again why would we not work to find ways to allow those with this diagnosis to do just that, to contribute to their communities and to the world? Individuals with Down syndrome are continuously showing they can do just that. Some are starting their own businesses, acting, modeling, being public speakers, marrying, and many other things once thought impossible. These things are things that most would consider the basis of being productive citizens. So if that is the case, if it is simply a matter of working to find alternative ways and methods to help redirect their sight, to help shine the light why would we not do just that? I’ll conclude with a quote from Hinchey (2008), ‘Critical theory is about possibility, and hope, and change’ (p. 14). I work and will continue to work to change the world’s perception of Down syndrome. To show Kaleb and the rest of the world that he will not be limited by me and if I can help it, by anyone else. I will strive to look for and create ways to show him the world and find the light so he and others can see the colors of this world.


Cawthon, D. (2002). Philosophical foundations of leadership.  New Brunswick, NJ: Transaction Publishers.

Feinberg, W. (na). The disclosure of philosophy of education. Retrieved from: https://blackboard.cuchicago.edu/bbcswebdav/pid-2135742-dt-content-rid-7777338_2/courses/1683.201710/FPR-7011-Online-Template_ImportedContent_20120504092620/FPR-7010-Online-Template_ImportedContent_20120105102614/Feinberg_The%20Discourse%20of%20Philosophy%20of%20Ed.pdf

Hinchey, P.  (2008). Finding freedom in the classroom: A Practical Introduction to Critical Theory
New York, NY: Peter Lang.

Plato. (1997).  Republic in Plato: complete works.  Indianapolis, Hackett. Retrieved from: https://blackboard.cuchicago.edu/bbcswebdav/pid-2135726-dt-content-rid-7777515_2/courses/1683.201710/Plato_Turning%20the%20Psyche.pdf

Standish, P. (2005). The nature and purposes of education. In A companion to the philosophy of education (p. 221-231). New York: Wiley-Blackwell.



Saturday, April 16, 2016

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 advocate for you and others with Down syndrome and here I am placing my own limitations on you yet again.  No, I don't know what the future holds. I don't know if you will marry, I don't know if you will drive a car, or a million other things that many take for granted. I don't know what your potential is, but baby boy I am making it my mission that no matter your potential, I won't limit you. I will work to take out my own doubts, fears, and expectations. Instead I will give you all my love and support and then let you lead from there. Always showing that I will be there to dance with you no matter the victory, big or small. 

The other night I was reminded of a memory from college. One night my roomate and I were laying in bed in our dorm room talking as we waited for sleep to find us. We were talking about boys when my roomate sighed, "If only we could look in the future and see who and when we'd marry. It would make it all easier now." I agreed. We wouldn't spend time worrying if we'd ever meet the right someone and when the time would be right. We could go through life more relaxed knowing that it would all work out the way it should in the end. 

I believe I was reminded of the memory as I can easily fall into the trap of getting lost into the worry of tomorrow. This thinking robs the joy from the present. I'll admit I have to be careful not to focus too much on the future. I begin to worry and become frustrated wanting to get a inside look at what that looks like and holds for you. This is when you my sweet boy, seems to fade and I seem to let your diagnosis take center stage. I believe I am reminded of this memory now because my roommate and I were looking for the reassurance it was all going to end up okay. Then we were sure we could relax and patiently wait it out and stop worrying and just enjoy the journey.

Going back to my vision of dancing with you at your wedding, I think of the mother and sons dances I've seen. I watch the emotion in that moment. The dance is special and sweeter because it is a culmination of moments that have led to that place in time. The moments that include sleepless nights, kissed boo boos, cuddles, and birthdays celebrated.  

If I spend time wanting to skip to the ending such as my old questions of who I would marry or now my worry of how your life will play out, I lose out on the journey itself. By skipping around in life and knowing the outcome, we take away the journey. By taking away the journey we cannot fully appreciate the ending.

Whatever life throws our way baby boy, let's dance. No, I do not know the future. However, I do know that I will make every effort to not look so far into your future that I miss the joy of the day. A day that once gone we will never have back. To miss out on that would be a sadness. To miss out on all your smiles, our talks, and to watch you discover the world around you. To watch how you make everyone fall in love with you. I can't promise life will go as planned, but then again life rarely does. I can promise that as long as I'm on this earth you will have a dancing partner. We will stumble along finding our rhythm. I will hold your hand in my mine, stare at your beautiful face, and I will let you lead the way. 

And now
I'm glad I didn't know
The way it all would end
The way it all would go
Our lives
Are better left to chance
I could have missed the pain
But I'd have had to miss
The dance

-Garth Brooks, The Dance 


Monday, March 21, 2016

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 believe this guy meant anything negative by his statement. As we were talking we discovered a mutual friend with a daughter with Down syndrome. He began talking about her and it appeared to be an attempt to make sure we knew and understood that he was friends with her.

However, I was aware that still he saw Kaleb’s diagnosis first. In the beginning after receiving the diagnosis, I struggled with this, so I get it. Even though many assured me that I would not always think or see his diagnosis first, and would tell me that often Down syndrome moves to the background as simply a condition that is just a part of him/her. Already at only six months of age, I am experiencing this and find myself thinking about it less and less. I also know others when they view Kaleb might first see Down syndrome. My hope and prayer is that they will not stop there, that they look beyond the diagnosis and see Kaleb.

Later that same day while talking with big brother Kaden I got out my phone, pulled up an email, and showed him a picture that his teacher sent me of him playing at daycare. He thought it was cool that Mrs. Debbie, his teacher, had taken his picture and sent it to Momma. We looked at it and we pointed out his Kansas City Royals World Series Championship shirt, his Thomas watch, and how much fun he seemed to be having. He then proceeded to take his finger trying to move the picture around and said, “I want to see more.” He then told me about his friends and other toys in his room. He knew that there was more going on than what the picture could capture. The picture showed just one snapshot of what was going on. The picture didn’t include his friends who were playing nearby, it didn’t show more of the toys around, or the feelings he felt while playing.

It is the same for many when they see someone who looks or acts differently. They see the initial picture, a picture that seems different. I have gotten to know Kaleb, I have fallen in love with the person. When I see Kaleb I see his beautiful eyes and his irresistible chubby cheeks. I see his spunky personality. A personality that shows itself more and more. I picture those big smiles I love and our "talks" we have as he coos at me. As with Kaden's picture I know that there is more to Kaleb than what meets the eye. That snapshot of his outward appearance or of his medical equipment doesn't tell the whole story. 


March 21st is World Down Syndrome Day, a day where we recognize those individuals who are born with a little something extra. It is a day to celebrate those individuals who so beautifully show us that every life can leave its mark and has something to offer this world. While having an extra chromosome gives them something in common, we recognize and celebrate their individual personalities, and varying talents/abilities. It gives us a day to show the world that there is more to the picture than what meets the eye. 



Tuesday, March 1, 2016

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 be pregnant with him anymore. I would never feel his powerful kicks as he grew bigger. I would never have the opportunity to wish for his foot to move from my ribs or feel him get the hiccups. I was not ready for him to have to face the world before it was time, feeling devastated that my body had let him down and I couldn’t keep him safe. On the other hand they couldn’t hurry fast enough. They had determined it was now too dangerous for him to stay in the womb and I wanted them to hurry to get him out of the place that was hurting him.

I remember sitting on the operating table slumped over feeling as if I was carrying the weight of the world on my shoulders while waiting on the spinal block. My doctor walked in and saw me and in his caring manner came over and rubbed my back. The wall that had been carefully placed to keep the tears at bay came down and I no longer could hold them in as he rubbed my back and tried to assure me and tell me it would be okay. I remember telling him through my tears it wasn’t me I was worried about. I knew not far from where I was being prepped was another team, a team that was preparing for their new very tiny patient.


While they performed the cesarean section to deliver Kaleb I could do nothing but stare overhead at the lights as I waited for them to announce his birth. The prayer that I prayed to Kaden each night for the first year or so of his life kept coming to mind. As a new mother I would hold a sleeping Kaden in my arms beside his crib. I would be exhausted and ready for a break but I remember feeling scared and having a hard time finally laying him down. The world is a scary place where one never knows what could happen; SIDS, disease, tragedy, etc. I also knew that each time I put him down the next day he would be one day older, one day closer to no longer being the sleeping baby in my arms wanting mommy cuddles. So I would pray. This was the prayer that came to my mind as I lay on the operating table. I said it for my first son, so I would say it for my second no matter what the future held. “Lord, thank you for this child, your child. If it be your will please allow me another day to be his earthly parent, and with that day help me to remember the honor and responsibility that comes with it. Help me guide him and teach him. And always help me show him your love.” I added on, “I don’t know the future for his life but you do, I dedicate him to you. I know you have a plan for him. Be with me, help me be the mother he needs.” I then awaited the birth of my second son.


I will forever be grateful for two things. One, we still got to hear him cry when he was born. I had never appreciated a cry so much. Second, I was able to see him. I had been told that I more than likely would not get to see him until they took him to the NICU and I had a chance to recover. Kaleb in true Kaleb fashion showed us all by being stable enough that they could bring him around for me to see him. I will forever be grateful for that moment. So tonight I will give Kaleb those extra cuddles and stare at his little hands, his chubby cheeks, and every other feature that makes Kaleb, Kaleb. I will try to memorize and record each of them to memory. I will attempt to catch up on all the cuddles we missed out on the night of his birth and the fourteen weeks that followed in the NICU. I look at him and think of the night of his birth. I was finally wheeled to the NICU after recovering for a time. I braced myself to see him as I knew he would be, hooked up to various monitors and looking so fragile and tiny. I looked at him and grieved for the rest of the pregnancy I lost and the time after labor that we should have had where we would have looked at each other after he was placed on my chest as we begin to bond, studying and learning each other. Instead, I watched him and listened to the machines and monitors. I asked the nurse and was allowed to reach in and I touched his little arm.


Six months ago tonight we may not have known if Kaleb would even have a future. Six months later we are home. Six months ago he was a 2lb 2oz baby with a full head of dark hair. Six months later he is an 11lb baby with an uncontrollable full head of dark hair. He has continuously amazed me with his strength and his attitude. I love our talks. I love our cuddles. I love watching him and Kaden together, seeing Kaden’s unconditional love of his little brother. I am constantly reminded of my prayer the night of his birth. “I don’t know the future for his life but you do, I dedicate him to you. I know you have a plan for him. Be with me, help me be the mother he needs.” Kaleb I still don’t know what your future holds any more than I know Kaden’s or my own, but I do know part of the plan for your life. To teach me. To teach me and show me more about this world and His love than I ever knew. So thank you for these past six months and I look forward to many, many more.