Tuesday, February 27, 2018

Superman, Captain America, and the Lion's Plan to Bring Back The Sun

My nephew Eli, my niece Lainey, and Kaden were playing in the living room floor on Saturday. Eli was pretending to be Superman and Kaden was Captain America. They were drawing up an elaborate plan to stop the rain and bring back the sun. Lainey, who had been playing a lion was told she couldn’t take the chalk to draw up the plan on the board because lions couldn’t draw. So she transformed so she could draw.

Kaden- “Who are you, Lainey?”
Lainey- “I’m a human.”
Kaden- “No, but who are you?”

We are often the same way. We are human. But we may wear many different hats, capes, or masks. I can pretend to be super mom and that I have everything under control and there are days I do feel that way. I try to be positive and constantly push through while also trying to push Kaleb to work on skill development but at the same time I am human. I have days where it’s not okay. It’s not okay that I don’t know how I’m going to juggle it all, while already worrying about the pros and cons of different class placements for next year’s daycare class, or thinking through what to do to help his motor skills progression or communication skills. I’m not always super mom, or even like in the case of Lainey, a lion, strong and saying hear me roar. I’m human, and I feel that the past few weeks, like our weather, there has been a bit of rain. We continue to worry and seek for answers on Kaleb’s hearing. He’s continued to fail hearing tests. Last Friday’s hearing assessment didn’t tell us much and we still aren’t sure what is going on. He wasn’t cooperative and have an appointment tomorrow because it looks like one tube is closed. We continue to see Kaleb struggle to progress on motor skills. We are having to admit more and more that he is struggling and having different issues that the majority of those with Down syndrome. We await the neurologist visit at the beginning of April to explore his high tone and if he could possibly have cerebral palsy due to brain bleeds from being a micro preemie.

While there has been rain there has also been sun. Kaleb now wears underwear when he’s with us. (Still in diapers at daycare since he has been inconsistent). While he still can’t stand or cruise along furniture he has made strides. He now tries to walk on his knees when he pulls to his knees. He even surprised me the other night when I was bearing most of his weight when he saw something he wanted and picked up his feet and tried to walk three steps forward. Since then he has done it another few times. Saturday morning he also took a few steps in a four point crawl. These are all cause for big celebrations.

It is tough, some days more than others. But then again, that's parenting. It is okay to remember I’m still human. But I will continue to work and to transform myself in my attempt to be what I need to be for my kids. So I will try to channel my inner supermom (Rockin’ Mom). Sure there are days with rain, or even some times flooding, but the sun will be there right behind the clouds. Like the kids, it might mean me transforming into whatever my son needs and making a plan of attack, while I work to help Kaleb transform into the person he is meant to be and to reach his potential. Sure there are days of rain and those days are hard, but I can’t begin to describe the days when the sun is shining. 

Sunday, February 25, 2018

I Choose You (Video)

The following is the video created from my letter I wrote to myself on the second anniversary of our Diagnosis Day.

Village Rockin' Mom

People may wonder why I spend so much time talking about DSDN. Especially when I have my own non-profit that operates solely on donors and fundraising. DSDN was in fact a game changer for me. I can still recall my feelings of loneliness and heart ache as I sat in Kaleb's NICU room pumping one day. Out of desperation for a connection to anyone I posted in a NICU Facebook group. I began the post; "Okay, feeling very alone." 
Another Rockin' Mom shared about a group she was in. She then got me connected with Jen Jacob and by the end of the day I was a Rockin' mom. I joined the group that would walk this journey with me. A group filled with so many friends who have become like family to me. I look forward to our family reunion (aka Rockin' Mom Retreat) in September. 
So yes, I talk a lot about  DSDN so that they continue to be a game changer for new families receiving a diagnosis and as they work to support all of their current Rockin’ families. This is the video I made that highlights some of my fellow Rockin' Moms and talks about what DSDN means to me. 

Monday, February 19, 2018

Life’s MESSages

I haven’t written many blog posts in the past year. One, I struggled with finding the time. I know shocker right with two young children, career, and doctorate. The other reason though is I was dealing with an internal battle. I struggled with the line between upbeat and positive posts and how much to share of the harder and tougher posts. Another way to compare it, would be unicorns or also sometimes referred to as unicorn farts. Sure, I’ve shared my fair share of poop stories, after all I am the mother to two boys. But I’m not sure I’ve ever written about farts. However, the unicorn holds a special place in many of my fellow Rockin’ moms. If you want to read of another blog post about the significance of the unicorn click here. The following is my explanation.

To explain, right after Kaleb’s diagnosis I would get online and I would find many uplifting and inspirational stories of parents talking about how quickly they came to terms with a Down syndrome diagnosis, how it is the greatest thing in the world, and everything is essentially rainbows and unicorns. Some, more eloquently refer to it as unicorn farts.  I liked these stories, I wanted desperately to believe them, I held on to this hope that they were true, but I wasn’t sold. Others like I was in the beginning and especially others outside of the Down syndrome adventure, have a hard time believing this and view it as people who spout off this nonsense must either be lying or in denial. In other words, these unicorn farts are just that, simply nonsense and a nice spin on Down syndrome. In their mind, they believe that these unicorn farts, call them or color them what you want, but in the end it all comes off crap.

Trust me, there is crap involved. A lot of it being our own insecurities, the world’s perception of different, mixed in with the chance of increased medical issues, longer wait times for milestones, and the need for a little more patience. I was also afraid that by sharing some of the hard parts of Down syndrome and his other health issues it would highlight the difficulties and not the amazing, albeit ornery, little boy he is. Because most parents will tell you that that extra chromosome will teach them so many extra life lessons that they wouldn’t have learned any other way. So many do this primarily sharing the sunshine, rainbows, and unicorns; myself included.

I began to realize my posts were becoming all sunshine, rainbows, and unicorns. I saw it. I also felt bad, because I realized I began to wait to write until I could put the positive to it. Then by life being life and being hard, I didn’t write. By doing this I wasn’t sharing the whole story. I believe there needs to be a combination. In fact what good is the positives and good, if not for the hard parts? It really started being put on my heart that in order to really share our journey that I needed to get back to sharing all of it. I believe there is beautiful in the messes of life. That it is in the mess of life that we often find life’s messages. You can’t even spell messages without the word mess in it. No mess, no message.

This is me getting back to writing and sharing our stories. So here are life’s MESSages. The good, the bad, the ugly. The unicorns and the unicorn farts. I will share the times that seem all sunshine, rainbows, and unicorns farts; as well as the days those unicorn farts are more stinky than glittery. 

(This picture just made me laugh and I had to share). 😉

Saturday, January 6, 2018

I Choose You

I can’t help but sit here and rock Kaleb as I think back on this day two years ago. September 3rd, 2015. Tonight I sit here cuddling him as we share in a few last smiles and giggles, and I can’t help but think of the difference in two years.

It was two years ago today that in between a rundown of his health I heard the words, “Results came back positive for Trisomy 21.” Two years ago today I thought my life was over. I have often thought about what I would say to myself if I could go to that day and try to reassure and encourage myself. While I’ve thought about it, I wasn’t sure I would have done this even if it were possible. Because in those hours following that statement I wouldn’t truly be ready to hear or believe it. It is also a hard concept because of the belief that I feel the way I do now because of walking through all of those feelings; the good and the bad. However, on this night as I walk down memory lane, here is my letter.

Amanda Dickinson
Saint Francis Hospital
Postpartum room #2213

Dear me,

Wow, two years later it still takes my breathe away as I think about the hours that followed the words Trisomy 21 and Down syndrome. So I know and still vividly remember the way you are feeling. It’s intense combination of feeling numb and feeling like every nerve is raw and exposed. Don’t worry, I’m not here to chant inspirational and motivational mantras and that it is all going to be okay and God only chooses special people. Okay, I will once, “it’s all going to be okay.” There I’ve said it. I’ve said it because it’s true, but I know you are not ready to hear it, let alone believe it yet. What I do want to say is it is okay to feel your feelings.

Go ahead, grieve the baby you had envisioned, you will learn that there is a better one growing on the fifth floor of the NICU. Go ahead, worry about Kaden, but you will learn that it is often Kaden who will teach you lessons on trusting and accepting. Go ahead, worry about your career, but you will see that Kaleb has enhanced it by fueling a passion to educate others. Go ahead, worry about your family dynamic, but you will see that two years later it’s a strong family of four. Go ahead, worry about Kaleb and this potential, but know that he will show the way and surprise you with each twist and turn.

The following is a quote from The Chaos of Stars. It is often said at weddings or in letters to a fiancé or spouse. One time not far from where you are now, I read it shared with a picture of a parent with their medically complex child. It made me love the quote even more. I saved it. I’ll admit it was something that I questioned. I wondered in my heart of hearts, if I would truly feel this way.  In the beginning I admit, I questioned. I questioned whether I was ready to sign up for this unknown. For potential health issues, potential delays, and all kinds of other unknowns. Would I recognize my son surrounded with this medical file and uncertainties. But let me tell you, that as I watch our son’s personality grow and I watch him live and love, it is true. So read this, keep it, and know that you will have that day. That day when you are holding him and this quote settles on your heart and you know just how true it is. I’m not going to tell you the day, because it will be that much sweeter when it sneaks up on you and happens. 

“I didn’t fall in love with you. I walked into love with you, with my eyes wide open, choosing to take every step along the way. I do believe in fate and destiny, but I also believe we are only fated to do things we’d choose anyway. And I’d choose you, in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.” –Kiersten White, The Chaos of Stars.

So go ahead, feel your feelings, all of them. Work through them at your own pace. It’s okay to cry in the shower on those days you feel overwhelmed. It’s okay for your heart to ache when you see him work so hard for things other take for granted. It’s okay, because for each of those days there will be even more days filled with happiness and joy. Right now you are sitting in postpartum room 2213, and all that seems to be screaming through your head is DOWN SYNDROME and WHY. Know that the day is coming that you will look into his big, beautiful, brown eyes and say with all of your heart, “I’d choose you.” In any world or any version of reality I'd recognize him as my son and I'd choose him, time and time again. 

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 Heather Bradley and 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 Heather, Jen, and DSDN has been to all of us. The power of the hands. As Jen saw the need for connections after their own diagnosis, and began the Rockin' Mom groups. Not only has she been influential in DSDN but her and others have influenced many of us to put our own hands to work.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. 😉