Tuesday, September 12, 2017

The Power of Our Hands


Nancy Gianni, of GiGi's playhouse began her talk at the DSDN Mom retreat this past Saturday with a story of her oldest child. One night as a baby her husband brought in their little boy, this little inconsolable baby to her. He was still crying as she took and held him, but then as she laid her hand on his cheek he nestled in and calmed down. Nancy went on to explain the power of the hand; the power of a mother’s touch. Throughout her talk we saw evidence of the power of what our hands can do as we learned the how and why behind the creation of GiGis Playhouse

Rachel Coleman of Signing Time was our keynote speaker on Friday night. She demonstrated the power of signing, when it came to her family and their story. Life has a way of taking us into uncharted territory but her hands have been an instrumental part of her family’s story. Not only were her hands a big part of opening the world up for her girls, but her hands have turned their story into the Signing Time episodes and videos, which has been powerful to so many families. The power of our hands. 

Image result for dsdnIt makes me reflect on the DSDN logo, the hand. All of this, the retreat which brought in 300 moms to Chicago this past weekend, the 4000 families involved in the Facebook groups, and the more than 400 new families DSDN has helped in 2017 alone. All because Jen Jacob decided to connect and help moms, and continues to work to change the diagnosis delivery. The power of the hand. 

I have said countless times that DSDN was a game changer for me. While in desperation to connect, to find common ground with someone, anyone, I posted in a NICU Facebook group one day. I posted about how lonely the journey was with having a 2lb baby, and then add in a diagnosis of Down syndrome. A mother reached out to me to tell me about DSDN and something called Rockin’ Mom groups. She got me in contact with Jen. From that moment I knew I wasn't alone, and it has made all the difference. A saying the Rockin’ Moms like to use is, "You’ve got this, and we’ve got you." I witnessed this and watched this happen in my own personal story.

Amanda and Jen Jacob
Saturday at the retreat another couple of moms stood up and talked about their new nonprofit. I couldn't help but think of just how influential Jen has been to all of us. Not only because DSDN wouldn’t exist without her, but how the influence goes beyond that role. All because of the power and work of the hands. These ladies, Nancy, Rachel, and Jen have helped show us that it is possible, and that we can change the world.

Jen not only has united us in these groups called the Rockin' Moms, but has also inspired many of us to put our own hands to work. Whether it be our own nonprofits, advocating in our community, volunteering, or being the best parents we can be. It is safe to say this lady has encouraged me and shown me it is possible to take an idea and turn it into reality. She has helped and answered questions as I worked to get Mighty Miracles Foundation going. So what I leave this 2017 retreat with along with memories made with 300 of my closest Rockin’ friends, is inspiration and encouragement from these women who have all shown the power of a mother's touch; the power of the hands. 



"And then one day I thought it slipped away
And I looked to my hands to hold on.
And then one day all my fear slipped away
And my hands did so much more."
–Rachel Coleman, The Good 

"I’ll slow down when the miracles slow down." –Nancy Gianni

"It is in your hands to create a better world for all who live in it." –Nelson Mandela

"The final forming of a person’s character lies in their own hands." –Anne Frank


Wednesday, June 14, 2017

Give me your eyes; prescription strength 93


 This use to be my prayer to God. Let me see the world trough your eyes. The idea behind this prayer was to see the world like He does so that I might love like He does. Even if as a human it could only ever be the smallest of fractions compared to His love. 

Enter Kaden, enter Kaleb. With the two of them I became of a mom to 93 chromosomes (one with 46 and one with an extra, resulting in 47).  

With Kaden, my prescription got stronger as I learned of a new love; the love of a parent. How a parent's heart stretches to hold this love so big at times you worry it might burst. As a friend likes to say, "You learn what it's like to have your heart walk in another's body" (and that is coming from a friend who doesn't get mushy and emotional). If I was capable of this love, I could only imagine how much deeper his love for us is.  

However, with Kaleb, I worried. I worried that his prematurity and extra chromosome would jade me. That I would see the all the bad there is to see. The hospitals with their tears and heartache. I worried about extra appointments, delays, and limitations. I worried about discrimination and sometimes intolerance towards those with special needs. I worried (and still do) about bullying, hurtful words, and unkind peers.  I worried that all of it might harden my heart to the goodness and beauty I longed to see. 

There is an old saying, "Don't pray for patience, unless you're ready for God to put you through the wringer." While I feel like this might not be the best Christian saying out there, I understand the idea. As it's in the tough trials that we can gain patience. 

God answered my prayer. Just in ways that was beyond my imagination. And it was an adjustment...

I remember growing up and getting new glasses. This happened roughly once a year, due to the fact that I have very bad eye sight. Growing up, typically when it was time for my next appointment I would need a new prescription. My new glasses would come in and I would put them on. The stronger prescription would always result in an adjustment. 

At first I would have to watch my step as the ground would seem un level. It was more of an issue with my peripheral. It wasn't so bad if I looked straight ahead to what was in front of me, but when I would try to expand my vision and focus on things outside of my central vision I had trouble. My glasses were an adjustment as my eyes and mind took in all of the new detail that I was able to see more clearly. The frames would also feel different from the frames I had broken in and had been accustomed to. 

This pretty accurately sums up my life after Kaleb. It took me a while to understand God was strengthening my prescription. With the birth of my new son my new pair of glasses had come in. The frames and shape of lens felt different, they didn't feel like they fit. But God showed me, they just hadn't been broken in. The ground felt un level as he used Kaleb to take my to places outside of my comfort zone and I walked hospital floors and over home medical equipment. The glasses were okay as long as I looked to Him and straight ahead to the day that lay before me. However, it was when I would use my peripheral to try and see things outside of the present and my control that caused it to be blurry and out of focus. 

My new prescription was a strength that was much closer to His eyes. Through my new prescription I have seen a world I had never ventured. As only the right prescription can do, it has allowed me to have clarity and discover the world around me. This new vision has come with a new passion and desire which has led to the formation of Mighty Miracles Foundation. With these glasses I daily get to see the joy that shines in Kaleb, which serves as window to view the good around me. With these glasses I see my own weaknesses through Kaleb's strength, my own doubts and limitations placed. With these glasses I see my own struggles and insecurities through Kaden's love and acceptance of Kaleb and as he would say, "all people". He is just Kaleb; his brother, his friend. 

My prescription continues to change and I work to adjust to them and always remember that it is through this that I am getting my prayer answered. This continues to come in many forms. Continuous fights with Kaleb to work on gross motor skills, celebrating when Kaden or Kaleb reach a new skill, mourning as a family struggles or loses their child, finding joy in he day to day tasks and battles of parenting children. 

Lord, strengthen my prescription so that my eyes and heart more closely resemble you. It is not easy or pleasant being pushed out of my comfort zone, but when I am help me to see and use these times for what they are; a chance to grow closer to you and catch a glimpse of life from your eyes. 


As for the new frames, they have been in place for 21 months now and I must say, feel like the perfect fit. 😉


Sunday, May 7, 2017

In My Arms

Wrote this for my boys a couple of months ago. Both of my boys are cuddlers. I love it. Kaden still asks for me to "rock him" at bedtime which simply consists of me holding him a minute while we talk about his day. Kaleb likes a few minutes of cuddling after we read our bedtime book.


In my arms
Let me hold you in my arms and hold you tight.
Lean down and softly kiss you goodnight.

Let me hold you in my arms where everything is alright. 
Here I will shelter and protect you with all of my might.

Let me hold you in my arms for tomorrow you'll have grown. 
For you will be one day older and growing into your own.

Let me hold you in my arms when you're hurt and need to cry. 
I might not erase away your pain, but I promise I will try.

Let me hold you in my arms as you listen to my heart beating. 
These precious moments in time are numbered and so fleeting.

Let me hold you in my arms even when they grow tired and sore. 
For one day I know I will reminisce and dream of just one night more.

Let me hold you in my arms and know my dear, that you are home. 
In me you have found your safe place no matter where you roam.

Let me hold you in my arms for one day it will be the last. 
And all of this will be but a memory from the past.

So until then...
Let me hold you in my arms and hold you tight. 
Lean down and softly kiss you goodnight.

Thursday, January 26, 2017

Welcome to Village Rockin Mom

They say it takes a village to raise kids. When trying for and planning for kids I never imagined my village would include so many medical professionals. I also could not have pictured a group of women, most of which I have never met, who I would feel so connected with and who would play such a big part in my support system. This group of women who call themselves Rockin Moms.

One day while sitting in the NICU I posted in a Facebook preemie group about how lonely the NICU journey could be and doubly for a parent with not only a very premature baby, but with a baby who also happens to have Down syndrome. I was about to receive my first lesson on just how not lonely it was. A mother told me about the organization called DSDN (Down Syndrome Diagnosis Network) who has these Facebook groups. The full name of the group is Mothers of a child Rockin an extra chromosome. Groups and group members commonly referred to as Rockin Moms. By the end of the day I was a part of a community of moms that would walk this journey with me. 


We all walk the same journey but have different paths: Some of us celebrate milestones earlier in the developmental timeline, more closely resembling the timeline of a typically developing child. Some of us wait a longer time for their child's milestone celebrations. Some of us know what it's like to hand our baby for heart surgery where they will become a member of the zipper club. Some blow us away with their child's sign language and communication skills. Our kids are as varied and unique as the moms who make up these groups. We are all different but we all have one thing uniquely in common; we have fallen in love with an extra chromosome. 


DSDN, it is an organization that I believe in and that I believe in so much that I celebrate when I get the opportunity to refer others parents to the amazing support groups. Some of us laugh about how excited we get when we meet a parent and we get to let them in on the secret about DSDN. With every parent that I direct to DSDN I let them know; your family is about to get much bigger. I have gone from the feeling of loneliness to my fellow Rockin families filling up my Facebook feed. 


The 21st chromosome may be the smallest chromosome in the human body but it is my experience that it can also create the biggest bonds. It does take a village and I'm thankful for each Rockin Mom that is a part of mine.


I urge you to please consider donating to DSDN as they work to welcome new parents into our Rockin community. As I tell new parents; DSDN was a game changer for me. Help them continue to make a difference in the lives of new families. I have set up a fundraiser to raise $1,500 for DSDN. I'll be honest, I'm an overachiever, I would love to see it go well past this number. Heck, I would love to see $2,500 raised. Click on the link and help me reach my goal. Even if you have 
$5 to donate thank you for helping me support an organization that has made all the difference in the world to me. https://dsdn.networkforgood.com/projects/24043-amanda-dickinson-s-fundraiser  

Please like or share as it help keep the post active. 

Wednesday, January 18, 2017

Letter to another family with a child writing their own book

To another family with a child writing their own book,

Kaleb is now either 16 months old or 14 months depending on how you look at it. Sixteen and a half months ago he entered the world 12 weeks early weighing 2 lb 2 oz. He is also considered 14 months old as of today since 14 months ago would have been his due date. For a parent of a preemie it can be confusing explaining the actual and adjusted age of a child. It can also be difficult as a parent to wait for milestones to happen that many parents take for granted.

Some days I do better at this than others. Yes, I knew from the time he was born a very small preemie that it would change things from the typical baby development timeline. Again I realized this when I learned of brain bleeds, Down syndrome, heart defect, and his other medical issues. It is a lot for a heart to take; wondering at their life, their potential. Wondering what milestones will they reach?

In some ways it gets easier and it some ways harder as they grow. It gets easier because you get to know and bond with your child. Even though it doesn’t seem like it in the beginning, you will bond with your child and their medical file will begin to separate from them; from their personality and heart. While you will love your child with every fiber in your being, it gets harder because while you know their development will differ from their peers. It is still a lot for a momma heart to take as you see it happen. For myself, it can be the toughest when I see other medically complex children reaching milestones that I am still waiting for Kaleb to reach.

However, those days… Those days when they do something. Either for the first time or you watch them do something and it triggers something inside of you as you suddenly remember those days, weeks, or months that you worried, stressed, prayed, and cried for them to reach a milestone. It is a joy that is indescribable. It is a feeling typically parents won’t experience like we do. Kaleb is pretty delayed in gross motor skills. Yes, that is even tough to say.  He does better with fine motor skills, socializing, and even communication he is not too so far behind. However, gross motors skills he struggles. Thank you prematurity, sickness, Down syndrome, and open heart surgery for that. He has trouble sitting, he can sit and has been able to for a while but does not like to. It’s been a fight and battle for a long time. He has rocked on all fours for a couple of months but doesn’t crawl. He isn’t ready to stand quite yet, let alone assisted walking.

Then today, today I got an email. It was a picture from his daycare. It was a picture of him sitting. That’s it. Him sitting and smiling. From his position and knowing him, he was probably wanting to get at the phone or tablet that it was taken on. That kid loves getting a hold of phones, computers, tablets, remotes, or anything or everything we tell him not to.  I knew he had been doing better and was sitting more at daycare. Still, something about that picture triggered the memories; the frustrations, worry, and stress. That picture, brought tears to my eyes. He is doing it, he is sitting.  I have watched at least two groups of kiddos go through his class and bypass him as they continue on to the next class. I watch the differences in ages get further and further apart. Today, it doesn’t matter. Because today, I got a picture of him sitting and smiling.

Right after that email came a text. A text from my mother to let me know that you and your family are about to welcome your baby into the world today. A baby who has already made you lose sleep while you worry, cry, and pray. A baby who will not be a very premature baby or come with a diagnosis of Down syndrome but will have a medical file of her own. They don’t think she will be able to walk, and have been worried about several other issues related to her diagnosis.

It will be hard to be a parent of a medically complex child. Then again, parenting any child is hard. Some days might feel unbearable. However, there will be days that something happens and you will look at her and cry. But, it will be tears of joy, while you marvel at her strength and yours.

I don’t know what her future will be. I don’t know what your NICU journey will be. We had 14 weeks in the NICU, but your journey will be unique to you and your baby. Each person’s is. However, I do want to say congratulations on your new miracle. I do know, if you let her, she will teach you more about this world and yourself than you ever thought possible. You will fall deeply in love with her. You will marvel as she grows, as she goes through labs, and endures tests and procedures in the NICU. You will feel this insane amount of joy as she graduates from the NICU. Celebrate each and every milestone no matter how small. One day you will look back on it and be amazed and you will wonder how she and you did it. You’ve got this.

Here’s to parenting one day at a time and the many adventures in store for both of us.

I can do this. You can do this.

Sincerely,

Another parent of a child writing their own book. 

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!