MDA Camp 2018

Thank you to all of you who donated to the MDA in Josslyn's honor through Jossy's Journey, Shamrocks, Fill-the-Boot and other fundraisers! Josslyn was able to return to camp this past early August for "The Best Week Ever!"

Kate & Josslyn

Here are some of the highlights: 

• bunking with her sweet friend, Kate
• Ms. Brianna returned to be her one-on-one counselor
• her BFF Alec returned to volunteer
• she met new friends
• built a Moana-themed contraption with her favorite Firefighters
• swim every day
• play soccer
• be a rock star at the talent show
• get asked to go to the dance by her BFF Alec! 

This week allows her to be in an environment where she can grow and form relationships that will last a lifetime. It allows her to have freedom from us (her caregivers) who may or may not be too strict some times! It allows her to participate in games/playtime with other kids on her level (no more tears when she is the first out or guilty feelings when she is given more redos than her siblings).

Mengelkochs in the cabin!

It also allows us to decompress from the day-to-day stresses of checking how much she eats throughout the day, is she sleeping/breathing/moving ok? Is she moving enough? Not enough?

Our big kids were able to spend some time with their grandparents, aunt, uncles and cousins in Atlanta. They were spoiled as well! Claire had 2 real life baby dolls to play with and mother too! 

Alec & Josslyn

Moana-themed float with our Firefighters!

Joel and I are grateful for time to spend together. It's easy to get caught up in the busy and not stop to spend time together talking, and just being together alone.

  MDA Camp is such a blessing to our family. Please consider volunteering and donating to this fund for kids like Josslyn!

Kyle, Brianna, & Josslyn ready for the dance!

Donate to the MDA

Josslyn is already counting down to MDA Summer Camp 2019!

Birthdays Should Always Be a Time of Celebration!

Seven years ago we were anticipating our third baby's birth. It was a stressful time with the crazy "pastor" stating he was going to burn a bunch of copies of the Koran on September 11th, 2010. My mother came and took our older two back to their house as I was a very weary preggo being almost a week overdue. Finally, during the final quarter of the Gator game Joel and I were watching together, my contractions started occurring every 5 minutes and we were sure that this baby was coming. Thankfully, that crazy loon decided to call off his stunt, so we felt safe to head into Gainesville. We arrived and took the last "before" picture of my huge belly and went in expecting a 10 lb baby to come later that evening. I was hoping to deliver around midnight and make her birthday September 12th, but things didn't go as planned. My water broke at 10:30pm. I told my midwife that my baby would be here in 45 minutes. She laughed.

Joel and I got to meet our nurse. She was an older nurse with almost 30 years of experience. She was chatty which was great for me. My husband is the strong, silent type so this was great for him too. She asked about our older kids. She asked all about us. She also talked about her and her experiences. It was great!

45 minutes later, my midwife came to check on me...to humor me. I was ready to push. Our baby girl was born at 11:15pm. She weighed 6 lbs 15 oz. We were shocked at how tiny she was. She had an Apgar of 9 out of 10. She latched on and ate like a champ right after birth. We named her Josslyn. A J-name for Joel who is also a September baby.

2 months later, I was sad and confused. Our baby did not hold up her head. Our baby had a clear lack of musculature. No pediatrician took me seriously. No one had answers.

Needless to say on her first birthday, six years ago...I was a mess. We still had no answers. Our baby could not do many things a 12-month old is expected to do. I tried, but I could not be happy for her first birthday. Family and friends who knew me then, saw and tried to speak life to me, but I was not able to hear them. I was afraid of what her life would be like as she continued to grow older. What would the future bring? Would she be made fun of? Would she be able to have a fulfilling life?

Flash forward to today...the night before her 7th birthday: She is an incredibly courageous girl! She can do anything. She encourages others with her generosity, tenacity and smiling face. She can walk, climb, run, dance, ride a bike, do yoga, and model. She is an MDA ambassador. She encourages local firefighters.  She passes out stickers to people who donate to the MDA. She creates works of art for the MDA Gala. She tells other kids about her G-tube, and how she has a rare form of muscular dystrophy. She is fierce. She is strong. She is a daughter of God. She prays for those who need help and don't know God. She's like a mother to her fellow students and younger children. She thinks of others. She looks for ways to be kind. She is amazing.

I'm thankful for this sweet girl God gave us. We certainly don't deserve her. We will celebrate her with or without electricity in the midst of Hurricane Irma. As she said, "I don't care, as long as I have presents!" She reminds me that birthdays should always be a time of celebration!

MDA Ambassador with Gainesville Fire Rescue 9/2017

First time at MDA Camp 6/2017

At the hospital before Josslyn's birth 9/11/2010

The Lighter Side of a G-Tube

"Would you like some ice cream?"

The answer to that question will always be "Yes!" from most kids. But not my tubie kid. I get all the free ice cream from CFA, as she will take one lick and decide she doesn't like it. 

Bonus!

"Here's your sprinkle cookie."

And 2 small bites later, I get the rest of the delicious sprinkle cookie.

Double bonus!

At our weekly lunch outings at Subway, we buy 2 meals. 2 sodas to split, 1 bag of chips for the kids to split and then 3 cookies for the 4 of us to split? Nope. My tubie doesn't eat cookies, so I get to pick out a white chocolate/macadamia nut cookie. It's delicious and I don't feel guilty.

Anymore.

I felt guilty a few months ago: I told her to eat her cookie at said Subway. She scarfed it down on a dare. 

She ended up puking it up. Like from the table all-the-way to the bathroom. Sorry didn't quite cover it. And she felt super embarrassed about it. :(

Now I don't push her, and don't let others push her to eat MORE.

Am I completely happy that she is hooked up to a feeding pump and bag every night?

Well, yes, thank you for asking.

I am now.

She gets most of her calories at night, and we don't have to worry about whether or not she eats enough. She has grown 2 whole sizes in clothing in 3 months, she has "more meat on her bones," and now she looks closer to being the spunky 5-year-old she is.

She also has so much more energy now. She can swim for hours in the pool, trying to touch the bottom and teaching herself to swim. She can walk to and from the ball-fields from the parking lots multiple times a week. She can run around and we're not praying (as much) that she won't fall and get a concussion.

Don't get me wrong...you haven't heard from me until now because tube feeding is tough. I almost threw in the towel when she lost 1/2 lb after a month of feedings! (Oh the anger!)

But we persevered and she put up with us. She (and I mean I) even endured her tube being pulled out while in the middle of a feeding. 

Here's what happened: She was playing outside while wearing her cute Elsa & Anna backpack I sewed into a tubie backpack (Thank you Pinterest!), when someone pulled something out of her hands while playing a game and they accidentally pulled her whole tube out! She freaked. I freaked. To the ER we went. 

Next time, she'll be ok and I'll be a big girl and just put it back in myself.

So yes, it can very much suck.

But at least she is growing and I get to eat all that yummy stuff!

The Good, The Bad, and The Ugly

Pre-surgery: Not excited...been here before, she was NOT having any of it!

Let’s start with the Ugly…

We’ve had some really awful days these past few months. Anxious mama, fussy kiddos, lots of jealousy, and twinge of pain—due to surgery and also those of the heart.

I had an over-the-top awful day 2 months ago. Just one of those days where everything goes wrong, like EVERYTHING!!! Stress is through the roof, my anxiety and depression were in full swing, and I couldn’t stand my own skin. (My poor kiddos…at least they got to watch a lot of movies and tv that day!)

 I finally decided to just turn on my computer and start Google-ing “Rigid Spine.” You know, just because I do this a few times a month…just to see if I can make contact. (I would liken it to NASA putting out messages into space in different radio frequencies in hopes of making contact with aliens.) So, at the bottom of the page in underlined blue were the words: rigid spine the view.

I couldn’t click fast enough.

Don’t worry, here comes the Good…

Suddenly, I had made contact. (Imagine me in that part when Jodi Foster is walking on the beach and makes contact with aliens in the movie “Contact,” so out of this world!)

Here was a mom, Mindy Scheier, who created an amazing non-profit company called Runway of Dreams, because her son Oliver has rigid spine.

1st night = rough night

I know!!! I got to see her, him, the whole family right on my computer. And I bawled my eyes out. For a very long time, while smiling. God is so good.

I came to Him, weak, totally spent; and He met me there and gave me this website which led to contact. I can’t EVEN. This moment was huge. It was like Oprah pointing at me and saying, “AND YOU GET A LIFE CHANGING MOMENT!”

I immediately emailed her with the subject line: “My daughter has rigid spine too.” Then, as I started writing my email, I realized I should probably send her my blog. So I did. She emailed me and we’ve been in contact via phone and emails. Our stories are eerily similar. 

She is amazing! She is making a difference with ALL differently-abled people of the WORLD! Truly, I am amazed and in awe. And I want to help. Please help her vision to help all differently-abled children and adults find and purchase affordable, adaptive clothing world-wide. Click here,please.

And now for the Bad…

Bad Girls, that is! These are Bad Girls who do good. (I know that’s not proper English, but you’re just going to have to go with it!) My Aunt and her friends are the Bad Girls of Sarasota. They sweetly chose Josslyn to be the center of their Sarasota Christmas Parade float and also to donate to our family this Christmas.

Playing Crazy 8s with her new cards and card holder! Day 2

I was afraid Josslyn would not be able to make it, but once she heard she was going to be riding on Uncle Tom & Aunt Kathy’s truck in the parade (with her as the center of attention!) she was up and out of bed! Yes, she is totally my daughter.

Josslyn and I went down to Sarasota ahead of the rest of our family, and she was stoked to help decorate the float and spend time with the Lauras, Shelly, Sharyl, Carol, Jessica, Patti, Karen, Gerard, Uncle Tom and Aunt Kathy! I can’t express how this float helped Joss to focus on something fun instead of the pain I know she was having. 

Laura Claire and Dylan also walked the whole parade carrying the banner in front of truck with Daddy helping. We were all so impressed that they made it the whole way! These kids are the best big brother and sister Josslyn could ever ask for!

And so because of all of our amazing family and friends, we had a fantastic Holiday season! Surgeries and all.

Thanks Grandma Patty for the Elf PJs!!!

Love these ladies!

Here's the whole crew!

Joss & Ms. Patti

Gator...

Chomp!

Keith and Joel

Bad Girls

Behind the scenes...sewing with Aunt Kathy

Surgery #1

“She needs a biopsy of her GI tract.” Moments later, “while she’s under, we’ll do a pH probe to check her reflux and then we also need to put in a NG (nasogastric) tube to make sure she can tolerate feedings and to get her electrolytes normal for the G tube surgery, which will occur 2 weeks later.” He handed me a 7-page blood draw order and told me to wait for his nurse to come in to schedule. He was very kind and listened intently. He was very calm. I had brought all of the kids, thinking this was just a quick appointment in which he would throw up his hands and say, “Good luck with the G tube, you don’t need me.” But I was wrong. His sweet nurse must have seen my deer-in-head-lights look on my face when she came in. She did, however, tell me that the NG tube may need to stay in for those 2 weeks before the G tube surgery. She tried to soothe me by saying the nurses would be there to teach me how to use it and also how to put it back in, just in case it was pulled out. (Instantly, the image of Josslyn trying to cut off her cast 3 years ago with safety scissors came to mind. It was suddenly not as funny in this moment as it had been then.)

I am grateful to have an amazing medical team at Nemours in Orlando. I am grateful that after all these years of “Failure to thrive,” these doctors have answers.

But, let’s face it: I’m terrified. I don’t want to see her in pain. I don’t want to see her fighting with the nurses and with us over this tube going through her nose and down into her stomach. And I don’t want her to not be able to handle the feedings. Because, then it will be a whole another scenario and nobody has explained that yet.

I’m slowly counting down the days when this surgery will happen. No longer will I get to check “NO” on the questionnaires asking if she’s had surgery in the past.

I’m also not sure she’ll be ready to go back for her G tube surgery just 2 weeks later. Will she ever want to go back to Nemours? She went from loving it there to dreading it. She’s not excited about the G tube anymore. Too many appointments with too many trips to the x-ray department. We haven’t gone to have her blood drawn because I know she’s going to freak out and I’ll have to hold her down again.

 It’s not easy to do that even when you know it’s for a good reason. Just like, when my grandfather passed away. I’m rejoicing that he’s in heaven with his family and being the life of the party as he was here, but I miss him. He hasn’t really been “him” for years due to dementia, but that doesn’t diminish the fact that I miss him. I’m so thankful I went to see him before he passed. The moment I sat down on his bed, our eyes locked and he smiled at me. Then he took my hands and pulled me to his cheek, where I knew he wanted me to kiss him, which I did. And he smiled for a moment after that, before his eyes stared past me and he didn’t smile at me again for the rest of weekend. Yes, he’s home now. And he’ll smile at me again someday. But for now, I vacillate between sorrow and joy.

I heard today that my friend’s son is going through some of the same testing. I was immediately happy to have someone to talk to, and also, very sad that she is going this with her son too.

It’s hard to have such differing feelings at the same time. I’m stubborn. I pick a side and I stick with it. Having to be 2 things at once is beyond my scope. It makes me want to bury my head in the sand and not come up until I have figured things out. Except, I can’t figure things out. I have to trust these specialists. Most importantly, I have to trust God.

He wants me to do something with all of this…He’s trying to tell me something. (Kinda like in Nemo…I’m Marlin about to escape the East Australian current to head to Sydney; not understanding a thing the turtle is trying to explain.)

But for now, I frankly don’t want to hear that Josslyn will be ok. I don’t want to hear that I shouldn’t worry. I just want people to pray for Josslyn and send her lots of fun things to do in the hospital and at home. 

And I want to help those who will follow in our path. I want to make it easier for my friend and her son.

I just want the best for my daughter. Even if it’s a worst-case scenario for me.

Swallow study at Nemours

Today was a good day.

Today, I threw my older children at my best friend who was having a bad day. Just one of those days we all have. She didn’t tell me she was having one of those days until AFTER I traveled 2 hours away from her and was finishing up with our second of three appointments…she is my best friend and I love her forever!

Today, I met a sweet mother and her 2-year-old son who pushes himself into everyone’s lives around him to bring conversation and most importantly friendship wherever he goes! He has SMA (spinal muscular atrophy). Look it up here. He has this spark about him that I have rarely seen. His eyes light up and he is genuinely happy to see you, meet you and speak to you. But most importantly, I see we met for a reason. Here was a sweet mama who sees the same neurologist as us, and has a miraculous story as well. We made a connection. It was a relief to meet her and be able to share our lives. I look forward to speaking to her more. Find his story here.

Today, our daughter is one step closer to a feeding G-tube. She is not gaining weight, but also not losing weight. She grew 1 inch in 2 months, when it had taken her 6 months to grow 1 inch previously. Josslyn is thrilled with the idea of having a tube. SERIOUSLY. I spoke to her about it months ago and equated it with an umbilical cord: “You’re going to have a special tube that takes in food straight to your belly just like when you were in mommy’s tummy! You don’t have to chew it or anything!” She squealed with delight and not exasperation like I thought she would. In that moment I saw God’s gentle and loving spirit glow even brighter in her. She’s amazing. (I wish I had it on video! I am thankful Joel was able to hear her. I think that’s what helped him accept it.)

Today, I scheduled 7 appointments and rescheduled 1 appointment. I still have 2 appointments to schedule. They have a wait list, so I’ll be answering my phone any time it rings in the next few days or weeks. There won’t be the option to just wait and see who leaves a message. That could add another week or so.

Today, I was overwhelmed by my family and friends offers to help. My best friend offered to take my big kids for any and all appointments coming up. My aunt and uncle offered to help in any way possible. My friends from all around the world have been praying for today.

Today, my son prayed to God, thanking Him for the time Josslyn and I got to spend together. Dylan was not upset that I was gone for the day, but thankful. This is BIG people! The Holy Spirit has been working on him lately…it’s like a Holy Growth Spurt! (Ha!)

Today, I didn’t come home and sit around worrying about the next appointments. I didn’t google G-tubes. I didn’t throw on my pjs and go to bed. I got dinner together, helped with showers & pjs. I unloaded and reloaded the dishwasher. I scrubbed the pots that have been sitting, for a day, dirty on the counter. I listened and read along with my big kids to their books they each picked out, and then read aloud a chapter from the book we are reading together. After I put the kids to bed, I folded laundry and talked to my husband. I got ready for bed and felt compelled to write…because today was a good day. Today God gave me a tiring but good day. He gave me peace. He gave me strength. He gave me all of these people in my life. He orchestrated today. My God is an awesome God.