Makenna's story-Heart surgery, Down Syndrome and the Journey

11/13/2025

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02/03/2022

Makenna had a bit of a cold last week, not covid but she surprised me by even knowing that word, and she said it was "breaking her heart" 😭

12/04/2021

Ready for school!

10/23/2021

Makenna making strangers laugh as she pretends to be a mannequin at a bookstore 🤣

09/03/2021

January 30, 2021

A few days ago a friend called me for advice. She's was going through a rough time and I was trying my best to encourage her. I began to share some things that'd I'd learned through my own rough patches in life. One of these times was during Makenna's surgeries. I shared a personally meaningful portion of scripture found in Ecclesiastes 3. The first verse says, "To everything there is a season and a time to every purpose under the heaven."
Ecclesiastes was written by the wisest man that ever lived, besides Jesus himself. Solomon had studied and searched for all the answers to the questions of life. He came to the conclusion that there must be trials. These are teaching moments and some down right awful times in our lives, but it is appointed, not mere happenstance. It is purposeful and ultimately needful. The next few verses show a contrast of the good times and bad. "...a time to weep and a time to laugh...to mourn and to dance...to get and to lose...keep and castaway...war and peace...". At the end of this list are some words I've unofficially assigned to represent this time in our lives, Makenna's and our journey.
"He hath made everything beautiful...in...his...time."
May 2 to May 11, 2013 and all the days surrounding that hospital stay were painful for me. There was no beauty in it at the time, only fear, sorrow, and a broken heart. Now, on the other end of that difficult trial I can look back and say that God has turned that dismal time, that ugly pile of chaos and heartache into a testimony of beauty that still leaves me in awe. Sometimes all we can see in the dirty, dark, unappealing things that seem to fall in our path, uninvited. We can pass through those times with the help of God's grace and turn those moments into portraits of beauty that others can look to and be encouraged and comforted by, because He has indeed made everything beautiful in HIS time.
As I am sharing these thoughts with my lovely friend, I have a spunky 8 year old flopping feet over head behind me on the couch, occasionally delivering a swift kick to the back of my head. I prescribe to my friend that she do as I had. I didn't keep my hard times and trials to myself. That would've made them feel all in vain. No. I shared every painful truth, detail and emotion with others so that they too could see and be encouraged that beautiful times are coming. A particularly hard blow to my neck knocks me off focus followed by a hug and Mak confirms, "mom, you did your best". Even a kick to the head can become a beautiful thing and I am thankful still that I can claim this promise.

09/01/2021

Journal entry dated January 19, 2016(age 2yrs 2mos.)

"Mak,
You talk A LOT! You say 'hiiiieeee Mooooommy!' about a thousand times a day. You went with me to the doctors office today. You ran into the waiting room full of people, did a big spin and wave, and yelled 'hiiii!'. Once your spin came to a full stop you bear hugged a random lady's legs in line, which surprised and scared her!
You look like a crazy bag lady right now. You always put all the purses you can find on, you're up to six now, and you're pushing around a shopping cart!"
~*~
Dr. McConnell, the cardiothoracic surgeon, said one of three things likely happened.
1) He accidently nicked the patch on the way out causing a tear he couldn't see.
2) A stitch was weak and came loose
3) The patch tore or came apart from some other unknown reason on it's own

Regardless of the reason, the surgery that had wrecked our lives for over 9 months would need repeated the following morning. He looked like the full weight of her damaged heart was on him. He apologized profusely and looked closer to crying than we did. We had smiles still on our faces and consoled him, reminding him that nothing happens without God's knowledge. About this time was when he let us know he was an atheist and said, "God didn't botch this, I did." He appeared ready for us to hate him and scream horrible things at him. We instead, put on our brave faces and told him our God was in control and we were fine, fine knowing no matter what God was aware and He loved Makenna more than we ever could.

Once our lone audience was out of sight, the heaviness of what just happened settled in that room. Smiles quickly turned to quivering lips. My eyes starting to sting as I tried to hold in the tears. I'm not going to lie to you... this was the lowest moment of my life. I met eyes with Brandon and we both stood stoic. My composure was crumbling. "I'm gonna go to the bathroom", I said as I quickly made my escape. I'm sure he realized something was up since I did pass our en suite bathroom in favor of the secluded restroom at the end of our hall. Once inside with the door locked, I fell apart. I cried the hardest I had ever cried. I sat there for over an hour on the floor with my head in my hands which rested on my knees. I had no words to even pray. I just tried my best to breathe through the sobs. I stayed as long as it took until I had some semblance of control, stood up, splashed water on my face, took a deep breath and opened the door.

I walked into Maks hospital room and saw my husband, her daddy, holding her while she slept in his arms. Wires connecting her to numerous machines and monitors slipped out through her half buttoned sleeper. His face was red and his eyes were puffy. He looked as exhausted and beaten up as I felt. We both just knew what each other was thinking. All we had needed to say was conveyed in that simple look.

08/24/2021

08/24/2021

Sunday We went to my oldest daughters soccer game. Makenna, in typical fashion thought everyone present was there for the purpose of interacting with her. She asked the ladies next to us their names, held out her hand and said "I'm Makenna! Nice to meet you!" within moments they were offering her a towel so she could sit on the ground in front of us. Which turned into her sitting in front of them, then in their chairs while the adult sat on the ground, and then somehow she ended up passing out and partaking in the snacks to the OPPOSING team from inside THEIR tent. She cheered on the "red" team, which isn't her sisters, and had us all cracking up all day.

08/20/2021

Finding out I was pregnant with Makenna :

I first realized I might be pregnant for a third time when one night, after putting 8 month old Sydney, and newly 3 year old Jude to bed, I finally had my "me" time. My husband, who can fall sleep the moment his head hits the pillow, was long into dreamland. I relished my alone time in the silence. I am a night owl so this my most alert and engaged time of day. I was working my way through a calendar that had Bible references on each day and if followed, would take me through my whole Bible in one year.
I think I was at the end of March when I randomly considered the fact that it had been a LONG time since I could remember having a period. At first I just assumed it was my poor record keeping. I'm the worst. I never kept track. As I went backwards thumbing through the calendar and confirming each week as a "no", I finally reached 2 months prior before I could definitively say I'd had a period. Immediately the nauseous feeling deep in my gut began.
There was still a chance I was mistaken. I tried to set it out of my mind and decided to pick up a test the next day. I procrastinated all day. It was dinner time before I worked up the nerve to take it. I think I just wanted my husband to be there, for moral support. Brandon monitored to dinner cooking on the stove as I begrudgingly ascended the stairs. and readied myself for the news. My mind spiraled as I waited for the pink lines to decide our fate. My babies were still babies! I didn't have the energy for a newborn right now!
"Pregnant." I already knew, but there it was, the inescapable proof. My husband could tell how anxious and upset I was all day. We've always been subconsciously great at balancing each other out. When one of us is freaking out, the other is a calm voice of reason and sets the spiraling one at ease. Today was his turn to be strong. He knew before my mouth said the words because my face, now devoid of all color, said it for me. He smiled and said, "we're having another baby! I'm so happy!" His attitude was actually pretty contagious and I wasn't feeling quite so devastated.
This was actually pretty foreign to me. We'd tried for around a year to get pregnant the first time. I took several pregnancy tests which ended in disappointment each time when I read the negative results. We only tried for one month before we were expecting our second baby.
Since this felt like a mistake, guilt overwhelmed me. I should've paid attention. I should've been more careful. I dreaded announcing this pregnancy. I thought everyone would know it was unplanned and that they'd judge me for being careless. Some did. Almost everyone we told responded with some version of, "and how old is Sydney now? you sure you're ready for this?" . Truthfully no, but like what was I supposed to do about it now? So those comments were super helpful...
We texted our parents that night to inform them. I felt like a call would prompt a few, "what were you thinking!?"s. My father-in-law, who was justifiably shocked just said, "speechless". Honestly, we couldn't agree with him more.
Once we visited Dr. Houser and had our first ultrasound our anxiety calmed a bit and excitement about our new baby settled in it's place. The first few kicks had eradicated any feelings of doubt surrounding this pregnancy. We were ready to add this finishing touch to our family like a garnish of parsley on a dish followed by a cliché chef's kiss.
Have you ever been to an amusement park and seen the roller coasters with tracks that are out of sight? We have one here at Kings Island. The Flight of Fear is hidden inside a pitch black warehouse. You wait in line with anticipation having no idea how insanely twisted, fast and horrifying the ride is about to become as soon as your strapped in and the employee taps your car signaling your departure.
This short lived moment of peace and acceptance about the baby felt like that. We ignorantly grinned as God winked at us and tapped our car.

08/17/2021

December 26, 2019

"Yesterday was Christmas, Makenna is 7 years old. She adores Christmas and fulfils every parents dream of seeing complete joy and wonderment on their child's face...but, If I'm being totally honest, this Christmas break from school has been tough on my husband and I. Without the routine and structure of school, Mak has no concept of time or days. On Christmas morning, Wednesday, I excitedly asked, "What's today!?!". Makenna's response was filled with every ounce of excitement she could muster, "FRIDAY!". She has no idea why we or she, is even excited. She wakes up on her own WAY too early and begins destroying her room. I can't seem to get her to sleep at normal hours, which has taken it's toll on her very old and sleep deprived mom and dad.
Every day I answer the same few questions for about what seems like 8,000 times. "Can you make ravioli?" (even while eating ravioli, mind you), "where are wee going tomorrow?" and "Can I stay awake?" (stay up late). She knows the answer after my first response and if I ask she will tell me the correct answer, but still she continues to ask and each time my soul seems to shrivel a little more inside of me. As frustrating as she can be sometimes, it only takes one heart melting moment to make my shriveled Grinch heart grow three sizes. As I am writing this, she sits atop me on our recliner, she has her Bible open and is slathering pink highlighter on all of it. She is trying to copy her dad and I. She's so focused. I see the profile of her sweet face, and her adorable almond shaped eyes, tiny button nose and the tongue sticking out as if she's painting the Mona Lisa. If we catch eyes I flash a cheesy grin at her and she reciprocates with a wide toothless smile!
I worry about her. At school and church they have trouble managing her and that fills me with sadness. She can't focus and follow curriculums. I think I'm thankful that she has no clue she's not on task. She appears to be blissfully unaware, but still it hurts my heart that she is oblivious to everything going on around her. She doesn't have a malicious or purposefully disobedient bone in her body, but her lack of comprehension means she's often off task and getting into trouble. The line between a necessary punishment to correct her behavior and wasting our time and energy while she's being disciplined is a very wide undefined road we are trying to navigate.
About a week ago, she walked up to me and said, "Mom, You're complicated!". Perhaps instead of being negative about how simple I fear she is, I should just stop being "complicated". Sometimes she is wiser than she knows.
There are many ways she completely surprises me as well. For Example, I let her watch Netflix on my phone and this kid, who wears not only her shoes on the wrong feet but sometimes 2 left shoes, can get exactly to the show, time, episode, microphone(because she can't type to search) the back button, volume, and can also without fail, block or decline all calls and texts that interrupt her. I have never taught her any of that. How?!

She is a wonderful, beautiful and pure enigma. "

08/17/2021

*Part 13*

There was little activity for a while, which can be a blessing although somewhat boring. We would venture to the parent lounge while Makenna rested and catch up on the newscast on TV. I will always remember one breaking news announcement that blew my mind! Three women who had gone missing between 2002 and 2004 were found alive in Cleveland, Ohio. They were kidnapped and imprisoned until May 6, 2013, when Berry escaped with her six-year-old daughter, to whom she had given birth while captive, and contacted the police.* It might be because of my unhealthy obsession with true crime that this stuck so vividly in my memory, or it could be that it was just some much needed good news that lifted my spirits. For whatever reason it's become somewhat of a mile marker in my mind.
In that same lounge we would eat some meals and interact with other anxious parents on our floor. There's just something about shared experiences that brings people of all kinds together. Everything that seems trivial is stripped away and you share an understanding that can only be described as the basis of humanity.
One such couple we met were Adalyn's parents, our neighbor in the hall. It broke my heart to find out they'd been here for over a month and were from a town more than an hour away with no more time to cover missed days at work. I can't remember her exact medical issues but she was was headed in the right direction at the time. Someone who had barely known me, Sarah P., had gone above and beyond to be there for me in my time of need. She brought gifts for not only Mak, but her brother and sister as well, who we missed terribly. She brought homemade incredible chicken pot pies, little gifts and things to keep us busy, a jar of coins for the vending and coffee machines and lastly, she gave me a Pandora charm that said "mom" with a heart in the middle to replace the "o".
Sarah's gift had meant so much to me and so after she left I rushed down to the hospital gift shop which I'd browse occasionally just to break up my days. I knew they also had charms. I bought Shellie, Adelyn's mom, a bracelet an several charms to symbolize this event in their lives. A butterfly for the hospital that had become home for the past few weeks. The hospital has butterflies all through out it, all over the walls, and even in their logo. A heart for her heart complications and repairs. Finally I chose a charm that said "I love you" for what I am positive Adelyn felt for her parents and their unbelievable sacrifice. Focusing on others 100% helped me as I traversed this unknown and painful territory. It can heal a heart more than you'd think.
We remained friends via Facebook with the family and continued to follow Adelyn's progress when both families were finally released to go home. A Little over a month later on June 29th, 2013 without warning and very quickly her heart decided it was too tired and she did pass quietly at home with her heartbroken family.
By the next June, in her honor they hosted a now annual 5k race. We've attended several and you can too!* They help raise money for the Ronald McDonald house, which allows families who don't live near the hospital to stay across the street from their loved ones.
Makenna's numbers didn't seem to change much but she was awake much more and some color had returned to her skin. Around day 4 we were moved to the less critical recovery area on the Cardiothoracic floor. The day we moved was also the first day since surgery that we caught a glimpse of that iconic smile of hers. After 4 days of no smiles, a feat she has never since been capable of repeating, this smile revived all of us. Our spirits began to rise and we looked forward to our impending departure. The night before we were scheduled to be discharged, the surgeon asked to do one more round of routine tests to be sure she was okay before he gave us the all clear. With confidence we agreed. Finally this whole awful ordeal was drawing to a close and we were already breathing a sigh of relief.
He returned about an hour later and politely waited for all the nursing staff to leave before he knelt down on his knee across from us on the generic beige pleather sofa. We were prepared to hear, "all good, see ya never!", so our facial expressions were froze in d***y grins as he started...

"I am so, SO, sorry but the surgery was a complete failure..."

*https://en.wikipedia.org/wiki/Ariel_Castro_kidnappings
*https://www.adelynsrainbowrun.com/

5K run