Wednesday, June 20, 2018

Discover


Discover. This was the word for the year I picked back in January. There were several different reasons behind this choice. For this to stay an appropriate blog post length instead of a novel, I will focus on one of the reasons behind this word choice. Kaleb. One of the many reasons I chose this word was to remind myself to enjoy Kaleb and enjoy watching him discover the world around him. Not to get so caught up in being his medical coordinator, therapist, teacher, nurse, and full time advocate. To remember to be his mother and to take the time to discover him and his personality.

While I think this is something many of my fellow parents of a children with an extra chromosome can relate to, I will only speak for myself. We all say, “Don’t compare,” and we sure as heck try not to, but it can be hard.  I often found myself comparing Kaleb to milestone timelines, his fellow peers of various ages at daycare, and even those buddies of him rocking that extra chromosome. It would take the joy out of Kaleb’s achievements. I shamefully admit that one of my fears in the beginning of Kaleb’s diagnosis was that I would always be thinking; awesome, Kaleb’s doing X but still not doing Y and Z. Occasionally I did. This is part of the reason for the selection of the word. I wanted to always push Kaleb but not being constantly pushing so hard that I forget to discover the beauty of the moment.

It would have been a shame to miss out on the joy and beauty of the past month, and even the beauty of tonight. Kaleb finally has begun using more of his ASL signs. He’s not saying as many words as he was but then again we hope to fix that tomorrow with his second set of tubes. He has never really picked up on using sign language until the past couple of months. Then finally not only was he using a few more signs but he started to put them together and communicate.

Tonight I watched him self initiate signs to me, eat all of his chicken nuggets, and then begin picking up his toys at bedtime without me even asking. He was so excited when I noticed and praised him that he signed more, turned around four point crawled a few steps, and then said “Up” as he picked up more toys. I could have focused on the fact that he’s two and a half and has very few words. Instead my heart soared at the conversations I have been having with him lately. I could have focused on the fact that I fed him the chicken nuggets because he struggles to bite off a bite of chicken while holding it. Instead I praised him that he finished all four nuggets, and remembered that he still had a Mic-key button feeding tube for his first ear tube surgery. Again, I could focus on him not really even being able to four point crawl at his age instead I was too busy cheering for him and how hard he’s worked to get to this point. While he was doing these amazing things, discover was the word that kept replaying in my head and heart. I was thankful that in the midst of delays I was able to discover and be witness to the beauty and celebration of the moment.

Kaleb in true Kaleb fashion wasn’t finished in impressing me tonight. After I read a book and turned out the light I cuddled him and made up stories which tends to be our nighttime ritual. Kaleb’s favorite kind of stories tend to be stories about him. So I finished a story about a brave prince named Kaleb. When I finished he patted my mouth and signed more. When I asked him if he wanted one more story he nodded his head yes, signed more and held up one finger. Needless to say, he got another story after several kisses.  
While I want to nod yes and sign more, I want more nights like this. I know the hard days will be there too. I finish this post as I go to bed to get up at 4:30 to take Kaleb to his surgery in the morning. I once again hand Kaleb off and even though it’s just tubes and adenoids, I will fight back the panic and stress as memories of Kaleb’s hospital stays and surgeries come flooding back. I hate to see how hard he works for things most of us take for granted. However, my brave prince Kaleb continues on as he discovers the world around him and I discover more about his strength and my own.


Tuesday, June 5, 2018

These Adventures We Call Life: A New Diagnosis


I’ve unpacked most of our luggage from vacation. Laundry and dishwasher are both running. I’m now sitting here in the recliner researching and reading, trying to expand my knowledge on Kaleb’s latest diagnosis. I am reading about cerebral palsy, or more specifically, spastic diplegia CP. The movie Avatar is playing in the background. Why do I mention the movie playing when I have much more on my mind today after Kaleb getting yet another diagnosis added to his seemingly ever growing file? It’s because the choice in movie.

After a few minutes I am reminded as my heart aches from processing this new piece of information that this movie ironically was on the tv on another hard day in my life. That realization, the recall of that memory, and life following suddenly makes it easier to process this new added section to Kaleb’s file. That day was the day after Kaleb’s diagnosis of Down syndrome. It was also our last night in the hospital. I was going to be discharged the following day. TJ and I had come back from the NICU to our postpartum room. He was out of the room getting dinner. I had turned on the tv and found the movie Avatar. But I realized I couldn’t focus on anything on it. I remember wondering if I would always feel this way. I was hurting and aching but I was in this bubble. It was an intense feeling. I felt everything inside, and everything ached and hurt, but I couldn’t seem able to feel anything outside of my own personal bubble. I’ve spoken before about wondering about life in the future. Would I, or could I truly feel happy about this new life I was handed. I remember thinking this is not the life I was expecting. I never thought I’d be a parent of a preemie, a parent of a child with Down syndrome. I worried about our future. This was what was going through my mind as Avatar played in the background.

But of course life went on. I soon realized how unfounded my fears were. Fast forward two and a half years of Kaleb living an ornery and happy life. We know his biggest struggles are his gross motor skills. I had concerns but were afraid to voice until one of his PTs brought up that she believed Kaleb was dealing with stiffness in his legs, especially his ankles.  I then admitted my own feelings with it. I began to work on getting referred to a neurologist. Kaleb had two brain bleeds at birth. A grade 2 and another which was grade 2, borderline grade 3. Today we went to see the neurologist. Today we got the diagnosis of spastic diplegia Cerebral Palsy.

Even though I knew that it was a pretty good probability, it was tough. Not many with Down syndrome also have a dual diagnosis of CP. Those with Down syndrome often have varying levels of low tone. While many with Cerebral Palsy, especially spastic CP, have varying levels stiffness or high tone. With Kaleb these fight and work against each other. It brought back a lot of old feelings. I remember feeling very alone that not many deal with both a micro preemie and a diagnosis of Down syndrome. Even though I see the difference between many of the children with Down syndrome and Kaleb when it comes to crawling, standing, and walking, I didn’t feel the distinction and feelings of loneliness until the official diagnosis. Now we are again pretty unique in dealing with both CP and Down syndrome. So these were the feelings I was feeling when I realized the movie playing in the background. So while the movie Avatar might not hold that much significance for many, it does for me. Because it took me back to another tough diagnosis. While I am not dealing with the same feelings I felt with Kaleb’s very early arrival and diagnoses, the memory reminded me not only of my initial feelings but that life does go on.

Yes, this is another thing that I never dreamed I would do, be a parent of a child with CP. What can I say, Kaleb continues to take us on many adventures. While it is never fun to receive a new diagnosis, in the same breath it can be good. It can be good to get answers. As I said, I have watched over the last year how Kaleb seems to struggle with gross motor skills more than most of his peers with Down syndrome. It helps support the reasoning for why he learns new skills in the bath and why he loves baths where he kicks up a storm. The water helps ease the issues with the stiffness and low tone and move a little easier. This information now allows us to work with Kaleb on skills while better understanding all of the issues and obstacles he’s facing. It allows us to better help him and help him reach his potential.

I’m not saying that I am fully at peace with it. Ask any parent of a child with special needs and they will tell you it comes in waves or cycles. This new diagnosis is no different. So just like Jake Sully in the movie Avatar, who learns to adapt to his avatar and then grows to love the planet of Pandora, I know that our family will adapt as we travel down these many adventures.

Saturday, April 21, 2018

I Know You Are There

While K2 teaches me many life lessons that I never would have experienced without his premature birth and several medical diagnoses, it is K1 that really adds to those lessons. Kaden has such a way with words. My five year old who is really like a little old man, has a way of putting into words the way I feel. I see him so clearly articulate his musings and lessons about his life and his world. It strikes me that often, it is pretty spot on for my life. It goes to show that even though I’m a mom and a working professional, that I am in many ways a kid with so much to learn and stumbling along life trying to learn these lessons. (Sometimes it makes me think of the meme that says, "Sometimes I look around for an adult adulting harder than me").

It makes me think of something he said the other day. Kaden, like me, has a very active imagination. So like many children, darkness and night can scare him. He was still talking to me as I walked to the door of his room after I tucked him in bed. I stood there as we finished our conversation about darkness and not being so scared. I had already checked his closet for him. Then as I’m leaving he said, “Momma, it’s dark. I couldn’t see you, but I knew you were still there.”
Me: “Yea, bud I’m still here.”
K1; “Sometimes when I’m trying to fall asleep and get scared I get quiet and I can hear you and I know your there.” ...“But sometimes you wake me up too.”

Today on this rainy cool day I am worn out after yesterday’s Mighty Drives for Mighty Lives event for our NICU nonprofit, Mighty Miracles Foundation. But I can’t help but reflect back on the past three years. I had absolutely no idea where my life was heading or what was in store for our family. It makes me think back to the plaque that sits in our home that I got in what was before 2015, the hardest year of our lives, 2011. It says,

“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.”
Then in 2015 the soundtrack of that season in our lives was Casting Crowns, Just Be Held. The lines in the song would constantly play in my head were,

“You’re world’s not falling apart, it’s falling into place. I’m on the throne stop holding on, and just be held.” (You can read more about a former post on this topic here.)

I fought him. I argued with him that he had it wrong, this wasn’t what should be happening with me and my family. I had to stop and let go and realize that at times it’s dark and I may not take the time to stop and see or hear him in the happenings around me, but He was still there with me every step of the way. He had a plan that I never could have fathomed. I didn’t know anything about NICUs but yet he used Kaleb and the rest of our family to put a passion in my heart to help other NICU families. In doing so I am humbled as I get to hear the stories of other families, and I’m constantly left in awe of their strength. In those times I think, “God, even in the dark you are there.”



I admit, there are times I still question. Okay, God, we had the NICU, prematurity, and open heart surgery, but why add Down syndrome on top of it? Kaleb has to work so hard sometimes to do things many come naturally to many. He made Kaleb the way he is and as his mother I will work to help him reach his full potential and discover this life God has for him. At times it gets dark, but then again that's life. There is day and night. It is sometimes dark as I see my two and a half year old unable to stand or walk. I don't know when he will reach these skills and can leave me worried how this is affecting his cognitive growth as he's unable to learn new things and discover his world in a way that walking allows.  I will continue to work on saying, 
"God, it's dark, but I know your there." 

My word for 2018 was discover. My goal was to discover Kaleb, his personality and who he is outside of his medical file. To discover laughter. That its okay to take time to laugh and enjoy life, even when at times it does get dark with worries and concerns about both boys, and when at times it can seem I am hearing a lot of tough stories from NICU parents or my Rockin' Mom friends going through tough times. I don't know what I am going to discover throughout the rest of this year but even when it's dark I know that He is still there. 


"For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you." -Isaiah 41:13



"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." -Joshua 1:9

“Thank you Father for writing a life for me that is full of more struggles than I would have ever willingly written in, but is so much more rewarding. Help me, that even in the darkness to always search for you and know you are there.”

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). 😉