Our White Cottage Life – A lifestyle blog: Decor, DIYs and daily dealings.

DIY Shiplap Fireplace

May 14, 2020

Welcome back!

When we first started designing our new home, we knew we wanted a fireplace. Our wish list was simple: easy and low maintenance, plug in and go! Our oldest son suffers from severe allergies, and any time he is around a wood burning fireplace or stove, he will break out in hives and get really sick. We ultimately decided to go with an electric fireplace insert for ambiance, we weren’t using it to heat up a space (although this one does do that).

We found the perfect fireplace insert on Amazon and I’ve linked it below in the materials section of this post.

When we met with our builder, we talked about adding a fireplace to our living space and discussed the price. Unfortunately it didn’t fit into our budget, which we were trying very hard to stay under. We went back and forth and ultimately decided we would sketch our design and add it to the the build specs, but it would remain unfinished until after we closed. Basically, it was framed out, drywalled, painted, electric run and fireplace installed. This SAVED us so much money, we came in under $700 for this DIY project. I believe we were quoted by the builder $4000 to create the finished look minus the side cabinets/storage system.

Fireplace during the framing stage of the build.

Materials used:

Shiplap: https://www.menards.com/main/paint/paneling-planking/planking/1-x-6-nickel-gap-tongue-and-groove-primed-mdf-board/1036521/p-1529303308646-c-8178.htm

Fireplace:

Mantle:https://www.wayfair.com/home-improvement/pdp/beam-fireplace-mantel-shelf-punr1002.html

We decided to add cabinets on either side of the fireplace for storage, one side is board games, the other DVD’s and video game systems. I love how they are hidden out of site, which makes for a clean look. We still need to add black hardware (that matches the kitchen) black brackets and white shelves to create an open shelf look. This is still on my husbands to-do list, but Im so excited to wrap up this project and move onto the next one or two!

If you want to check out the fireplace insert up close, check out my latest instagram post https://www.instagram.com/p/CAJdiKEHlkv/

Have you mastered a DIY in your home? What fueled your desire to take on said project? For us? Price! We definitely wanted to splurge in a few other areas of home *cough quartz countertops *cough. We also felt this was a project we could tackle comfortable, and my husband did a beautiful job. We make a wonderful team, I dream up these scenarios/designs and he brings them to life!

Despite our lives being turned upside down during this pandemic, I hope you are still finding joy in each day!

-Flooring+Interior Finishes-

April 16, 2020

Welcome back!

Interior progress is coming along beautifully and the end is in sight! I love watching our design selections come to life. First, wall color, followed by cabinets, lighting/plumbing fixtures…………and now….F L O O R I N G. The last piece of our design puzzle which covers every square inch of our home.

There are so many options when it comes to flooring. Hardwood, Bamboo, Tile, Carpet and LVP (luxury vinyl plank) to name a few. We thought long and hard over this decision and had a few major factors that played into the final decision on our flooring selection.

Majoy Factors:

BOYS. As you know we have three little man cubs, full of energy and totally ALL boy! We were definitely looking for something that could withstand their beating (toys and cars being scooted across the floor etc.)
Wide planks with a texture look/feel/
A product that was easy to clean and easy for a wheelchair to maneuver on and around.
Waterproof, we planned to choose one flooring and use it throughout our house, bathroom and laundry rooms included.
Cost efficient. Looking to spend less than $4 a sq foot.
Customer Service, because we were taken this on ourselves, we wanted a good working relationship with the flooring company.
DURABILITY….see #1

After a few months of research we decided to go with Flooret Flooring. We ordered quite a few of their samples (their samples are massive which makes it so much easier to visualize the product in your home). The durability is hands down some of the best on the market. The topcoat alone is 40ml (most products our there are 10 to 12 ml). Flooret sells right to the consumer, which means no middle man and no mark ups! We paid $3.95 a sq ft. We worked closely with one individual throughout our whole process, if you’re thinking about this company ask for Ashlee! They have so many color options to choose from, we originally thought about going with dark floors, but after hearing some pros and cons to dark flooring, we opted to go with a lighter shade. We ordered 2600 sq ft of flooret flooring in the color, Sutton. It took a few weekends to install, considering we had no experience laying flooring, I think that’s pretty good!

*Flooret Flooring in Sutton*
https://www.flooret.com/

Update: We have lived in our home for 5 months now, and I am just as happy today as I was when we installed our flooring. It’s taken some beating, and still no scratches to be found. If you’re in the market for new flooring for a reno or new home, I highly suggest reaching out to this company. They have two new lines available a cost effiecient alternative to their more expensive flooring, and a line of tile.

Because I love this product so much, I’m excited to offer you a discount on their samples….use OWC33 at checkout to save 33% off your total order! To get free shipping use OWCSHIP

Tag me on Instagram @our_whitecottage if you decide to go with Flooret, I would love to see this product in your home!

Hope your week is filled with joy!

-Westport-

September 8, 2019

Hi there!

After taking a few minutes to think over our options, Brett and I decided to move forward with the Westport floorplan. We fell in love with the interior layout, size of the bedrooms and the great room! In a previous post, I mentioned how we loved the exterior of the Montgomery more than the Westport, and wanted to keep our costs on the lower end with the upgrades. Wayne Homes offers a variety of elevations with each model, which of course varies in price. Naturally, I loved the most expensive elevation….no shock there. We ultimately chose the Westport because it offered 2600 sq. ft. compared to Montgomery’s 2100 sq ft. we figured sq footage wasnt something we could add down the road, but we could make small modifications to the exterior to customize it and make it our own. We started with the classic elevation added a lay on gable, and pops of board and batten across the front of the house. We decided if we ever lived in the country, we would love to go with a classic white farmhouse vibe. White siding, black shutters and a wood front door. That’s exactly what we are going with too!

*Wayne Homes Westport Classic Elevation*

I can’t tell you how hard this journey has been, the ups and downs, but in the end, we are better off than we ever imagined. When you’re in the thick of it, it’s hard to see His plan, but looking back, every hurdle was leading us home. If our two former builders hadn’t backed out, we would have compromised our dreams for something we didn’t love. Our forever home would have been in a noisy city on a small patch of land. No space or room for our boys to grow and explore.

This is how our home currently stands…

Our White Cottage
https://www.instagram.com/our_whitecottage/

We are nearing the end, and when I say end, I mean about 6 weeks out (fingers crossed). We are at the fun stage of the build, where all of our selections will come together, and we can see our vision come to life. I can’t wait to drive by and see her turn into the beautiful white cottage with the modern farmhouse twist we’ve been dreaming about for the last year. The process has been chaotic and upsetting at times, but it’s funny how you forget all of that when you’re nearing the end. Right now, I’m seeing sunshine and rainbows, and she’s definitely been worth the wait. Feel free to follow along on Instagram @our_whitecottage https://www.instagram.com/our_whitecottage/

Happy Sunday friends, may your week be filled with so much joy!

-Building Journey-5

September 8, 2019

Welcome back!

How many people get to say they designed three homes before even breaking ground? Third times the charm, right? Back at square one with a new builder and new land. Our desires/wants for the home have always remained the same, finding a builder that could check them all off was a struggle, but we remained hopeful and reached out to Julie, at Wayne Homes. Right from the start she made us feel at peace, she sympathized with our situation, and was eager to help us get into our dream home. We were drawn to two Ranch models, The Montgomery and Westport. Both offered the space and (with some modifications) the layout we desired. The price point was close, maybe $10k difference between these particular models. I loved the exterior of the Montgomery, but the interior of the Westport. Below is the list we provided the builder (all of our builders) of some must-haves for our home.

Office/4th Bedroom
Separate laundry room/space (since we have 3 boys)
Dedicated dining room/area large enough for full dining table (would not require separate breakfast nook)
Two bedrooms with shared bathroom for kids.
Additional bedroom/ADA bathroom very close to Master bedroom area for Jack. If it works to have Jack’s bedroom attached to and share a large master bathroom, that works too.
3 ft pocket doors on Jack’s bedroom and bathroom, and wherever possible (stairs if closed off)
3ft wide garage entry door.
Extra landing area room at top of basement stairs for future chair lift, including room for parking wheelchair beside lift (adding studs/outlet to the wall for future chair installation would be helpful)
As open as possible for wheelchair maneuverability (4 foot hallways if any exist, 4 feet between kitchen island and cabinets across from island, etc.). Any interior openings (into kitchen) should be at least 3 feet
Ramp in garage for wheelchair entry into home, ( we plan to build the ramp, but we need the space to incorporate that) or raising the garage to be level with the house if that is a possiblity. Need enough room between vehicle and ramp for wheelchair to exit modified vehicle in garage
Patio door that wheelchair can exit, might require french door
Some vault to ceiling in living room (cathedral)
Electric fireplace insert in living room
Separate soaking tub in master bath (offer jetted tub?)
Full basem

My rough sketch and modified version of the Montgomery floorplan. We moved some walls around added an additional bedroom off of our Master bedroom/bath retreat with ADA shower. Closed off the laundry room, and added an additional 3rd garage bay. Click the link to check out the original Montgomery floorplan: https://waynehomes.com/custom-home-building/floor-plans/montgomery

My rough sketch and modified version of the Westport floorplan. For the most part, the layout was perfect. 4 bed 2.5 bath home. Open layout, large kitchen and master bathroom. There were a few things we didn’t love about the plan. Bedroom door right off the foyer (we created an alcove and new entry into the secondary bedrooms/guest bath. Where the 4th bedroom/ADA bath is located, there was a hallway/walk-in pantry/1/2 bath. We combined all of those to create a future space for Jack. Close to the garage and our Master bedroom. The mudroom/laundry was originally one large room, but I prefer a separate laundry room that I can shut the door and forget about. We have since switched up the layout of the master bathroom and closet. We added an additional 3rd bay, and paid the extra $$ for zero entry. This means, no ramp/step up into the house from the garage. If you’re thinking about building and making it your forever house, think long term. We added sq. footage to the great room layout. Click the link to check out the original Westport floor plan.
https://waynehomes.com/custom-home-building/floor-plans/westport

We loved both of the floorplans, and after chatting with Julie, she suggested we move in a certain direction. It the long run, the modifications we wanted to make, and the square footage we needed to add would drive the price up quite a bit. Brett and I thought long and hard, and decided to move forward with….

See which plan we chose in my next post!

-Building Journey-4

September 8, 2019

Hi there,

In my last post I talked about our struggle with two separate custom builders, which eventually led to selling our lot in the city.

Where were we headed? Home. After moving 1.5 hours south for the last ten years, we were going home. Back to our roots. Close to both of our parents and a few of my siblings. We thought and prayed long and hard and had no doubt this was the door God was leading us through. We traded our small lot for wide open spaces. Immediately there was a sense of relief. My husband and I both enjoy being home, spending our weekends with the kids and unwinding after a busy work/school week. If you’ve read up on Jack’s Journey posts, you’ll know we learned our son would eventually lose his vision. We were concerned the noise of city life would make it unbearable for him, and moving to the country was a sure fire way for him to know peace so to speak.

We had the land, now what? The house! We had to start from scratch and that was okay. When we first started down this path, we looked at a lot of options and floor plans from various companies, one stood out to us above the others, Wayne Homes.

We had people tell us not to use a company that mass produces homes, that custom was the only way to go, to which we simple replied, “we were burnt by two custom builders, thanks, but no thanks.” We were happy to go with a well oiled machine, and in September we signed on the dotted line with waynehomes.com to build our forever home in the country.

I’ll share all about the floor plan we chose and the ‘why’ behind our decision to modify our plans.

Thanks so much for stopping by today!

-Jack’s Journey-12

September 8, 2019

Original post Feb. 2019

Happy February!

I hope you’re staying warm this winter, spring is (hopefully) right around the corner.

Here is the latest on Jack:

Genetics

The appointment went wonderfully, they asked a slew of questions, we answered them, and then we kind of revisit where we were the year prior. Jack is still progressing, there was no mention of regression from the previous year, which is always a GREAT feeling. We walk into this appointment, a little apprehensive, not knowing if they will spot a (negative) difference from the previous year. Dr. Prada mentioned some of the advances they are making in gene mutation, and a new drug they are hoping to push forward to help treat some of the symptoms that go along with ML4. These little conversations bring us hope…and like I’ve mentioned before, in this life, we cling to anything that brings us hope. After stepping out of the room with our genetics counselor, Dr. Prada commented on Jack, and “how good he looks”….again, words I’ve burned into my brain to get me through the rough days.

Opthalmology

We hadn’t seen Jack’s doctor for awhile, because we opted to do the Boston Research Study last summer, we postponed our appointment with Dr. Motley so he would have access to the research study findings. Our appointment with ophthalmology was underwhelming, but also posed a few new things for us to discuss/think over.

As we mentioned before, Boston found in addition to Jack’s cloudy corneas, he has cataracts in both eyes, there were three additional doctors brought in to confirm this while Jack was under. We were given some suggestions from Boston, to get another opinion (there were 4 doctors saying “yes to the cataracts”) so not sure why we would put Jack under again to confirm their confirmations. They mentioned a 12 year old boy (also with ML4) who had cataract surgery to remove them, in addition to having his corneas replaced, but they didn’t elaborate on his particular case.

At Jack’s ophthalmology appointment, Dr. Motley couldn’t see the cataracts, due to the cloudy corneas, and said he would more than likely have to put Jack under to get a clearer picture of the cataracts. We would rather not put Jack under, or at least avoid it as much as possible, so we asked Dr. Motley to reach out to Dr. Fulton in Boston, and see if she would discuss their findings with him.

Here are a few of the things we now have to consider:

1. Are the cataracts worsening Jack’s vision?
2. Should they be removed?
3. If the cataracts are removed, should we do a corneal transplant at the same time?
4. Does the risk outweigh the benefit?
5. Who feels comfortable performing this type of surgery?

We aren’t sure how much the cataracts are bothering Jack, I am hoping the conversation between Dr. Motley and Dr. Fulton will bring some clarity to that question. We asked Dr. Motley to see about getting more information on the young boy who has had this surgery, how old he was, how did it improve his vision etc. If we decide to remove them, should we go ahead and replace the cornea at the same time, two birds with one stone mentality. If we replace his current corneas, we are in for a lifetime of upkeep, meaning, his body could very well reject the transplant, resulting in multiple surgeries. As this is a metabolic disease, this will not fix the cloudiness, instead, over time it will become cloudy, and so we go through this cycle of clearer vision followed by becoming visually impaired all over again. Does the risk outweigh the benefit. One of the reasons Dr. Motley is pushing to have something done, is because Jack is in a crucial stage of development between the brain and eyes, and he’s afraid of missing the window, so to speak. Again, hopefully having a discussion with Dr. Fulton, will help him get a better picture of ML4 patients. There aren’t very many doctors in our area that do the type of surgery Jack would need, the one that does, is very selective about his cases. Dr. Kauffman (who we met in April 2016) is not in the habit of performing any surgeries that he wouldn’t perform on his own children, so if there is ANY risk, he will more than likely advise against surgery. Which means we would have to travel out of state, and over and over again if Jack would need additional surgeries.

We are in a holding pattern right now, waiting to see what Dr. Motley learns from Dr. Fulton. In the process of scheduling an appointment with the eye clinic at Cincinnati Children’s, to meet with Dr. Utz and Dr. Kauffman. Praying for guidance as we will at some point, have to make some hard decisions on Jack’s behalf. It’s never easy, but we wouldn’t change our Jack for anything, he continues to be more than we could have hoped for, and we are so proud of all he has accomplished so far in life.

For now, we are focusing on some big changes for our family, gearing up to break ground on our new house in the next month or so, and preparing our current home for the market. We are looking forward to this fun adventure with our boys!

Thank you for your continued support and prayers, we are forever grateful for our community!

-Jack’s Journey-11

September 8, 2019

Original post date: January 2019

Hi there,

First post for the new year! I’m not sure what direction this post will go, so bear with me as I try to put to paper, the words bouncing back and forth in my head.

Some of you know we have a Facebook page dedicated to Jack, and basically our lives living with Mucolipidosis (which I am TERRIBLE about keeping up to date, another resolution I am working on) called, Loving Jack www.facebook.com/groups/164857444313505/

This page is a peek inside our world, as a family living with ML4. If you aren’t a member, I would encourage you to become one, as I slowly transfer all things pertaining to Jack + ML4 from my personal Facebook page to his “Loving Jack” Facebook page. In addition, for my friends/family on Instagram, I have created a page for him @lovingjackhenry be sure to follow along there as well.

Social media has proved to be a powerful tool, to connect individuals, to advocate for others, to raise awareness and share fundraisers for organizations working tirelessly on our behalf. We are so thankful for the individuals who take time to invest in Jack’s story, but take it one step further and share it with others. I have connected with some amazing #specialneedsmamas through social media, and I love the instant connection, understanding and bond you find in these relationships. They are mama’s who have children with various needs, no two alike. My heart is still struggling with the idea of connecting with other parents living with ML4, and you might say to yourself, “why, what are you waiting for?”

I’ll tell you why I struggle breaking through this barrier…I recently read an ML4 newsletter, in which it discussed a patient who recently succumbed to Mucolipidosis. Immediately I went into a dark hole, my heart broke reading the newsletter, and although this young man donated his body to science, in hopes of helping others living with ML4, I didn’t focus on that, I focused on the fact, he lost the battle, ML4 took him away from his parents and his two brothers. This man was 36 years young. Reading the article I began focusing on the timeline, he was the oldest living person to date with ML4. Which means, 36 is the number. It’s the number I have burned into my brain, a number I pray to God Jack will beat. For me, connecting with other ML4 parents, means I will get a look into our future, and my heart does not possess the strength to see it, at this time. In time, I hope that changes. But for now, I am right where I need to be.

Jack is scheduled for his yearly check up with his genetics team, and my nerves are shot. I dont know why this appointment always gets the best of me, but it does. We see Jack daily, we see his progression, and at times I fear I see his regressions. When you walk into a room, where the team hasn’t seen him for a year, you fear what they might say…”he is doing better than last year, he seems to be at a standstill, he is regressing” all of these sentences bounce around in my head, and I try to stay in the present, but some days it’s a battle.

Every single day that he is here with us, is ALWAYS a good day, and so that’s where I shift my focus. He loves his brothers, and they love on him. As he grows, we get to see his personality blossom and grow, and this kid, he has a ornery streak. He giggles when his brothers are reprimanded. Theodore has fallen face first a few times, because Jack systematically waits to pounce on his prey. He grabs at the ankles and legs, and usually Theo will come tumbling down. Which isn’t funny, but we enjoy seeing his playful side, I guess at the expense of his two brothers.

We are gaining a better understanding of Jack, and what sets him off. He is a homebody, he enjoys the comforts of familiarity, and maybe that’s because his vision is impaired. He doesn’t necessarily enjoy being in the middle of a large group of children. He likes one-on-one time. He likes his quiet, and his music. He likes books and balls, toys that produce a cause and effect actions. We would like to attend all the soirées out there, but unfortunately it’s impossible. Our day to day lives are determined on how well Jack is doing that day. Some understand and support that, others are still trying to comprehend the decisions we make for him and our family as a whole. We appreciate and value everyone who has taken the time to invest in Jack’s story. Those who make the time to understand our position, who venture outside of their comfort zone to embrace us in our new life. We are grateful for each and every single one of you, and we know that it’s because of your support and your prayers, that we are able manage each day.

Please keep us in your prayers this week.

-Jack’s Journey-10

September 8, 2019

Original post date: July 2018

Hello,

We are home and recovering from our quick trip to Boston, where Jack participated in a Mucolipidosis Type 4 research study. This (newer) study’s primary focus was how ML4 effects the eyes in patients. As I’ve mentioned before, ML4 effects all areas of the body, but the eyes are usually the first thing to succumb to the disorder. The corneas are always cloudy (within the first year) and the retinas deteriorate within the first 15 years of life, rendering them completely blind.

We met with a slew of Doctors, some who saw Jack as a number, in this case #5, he is the 5th child to participate in the study, the other Doctors saw Jack, for Jack. It doesn’t anger me when he is seen as a “subject” I believe there has to be a delicate balance of doctors who are a little withdrawn, I like to believe they are in so deep, that all that’s running across their minds is….treatment, cures…etc. The Doctors who treat Jack like a human being, are a breath of fresh air, where you can be a little more at ease, and even though, you know they are wanting a cure or treatment just as much as the others, they’ve mastered the emotional side of their job. It’s a happy balance, and one we’ve witnessed since the beginning of our journey, there was always a Doctor who presented the facts, without emotion, without sugar coating the situation, on the flip side of that, was a person who brought it full circle and invested emotionally into our journey.

Dr. Fulton, Dr. Hanson and Dr. Laura. were on the Ophthalmology side of this (research study) visit. We met with them on Tuesday and Thursday. Jack’s first appointment was a meet and greet, where they wanted a little history from us, regarding the sequence of events that led us to Genetics. Dr. Hanson and Dr. Laura preformed a routine eye exam, where Jack had to spot stripes on a board, he scored the same as he did in Nov. 2016, which is AMAZING! Because Jack is unable to speak, he had an Electroencephalogram (EEG) performed. An EEG is a test that detects abnormalities in your brain waves, or in the electrical activity of your brain. During the procedure, electrodes consisting of small metal discs with thin wires are pasted onto your scalp. The electrodes detect tiny electrical charges that result from the activity of your brain cells. The charges are amplified and appear as a graph on a computer screen, or as a recording that may be printed out on paper. Your healthcare provider then interprets the reading. Jack’s preliminary score was about a 4. Dr. Hanson said that a typical child of Jack’s age would have scored closer to 20, so this wasn’t the news we were hoping for, but again, we weren’t unprepared for it either.

On Thursday, we had to have Jack at the Hospital at 6:00 am, so he could be admitted and prepped for sedation. We’ve been through this before, we sat with Jack for an hour, read him books and played before it was time to take him back to be put under. I opted out of holding him while he was put under, I can never hold back the tears, Brett took the lead, and sure enough, I still cried, silently while watching Brett carry him off, and immediately regretted not going back to be with him while he drifted off to sleep. He was in capable hands with Brett, and I do feel it’s important to share the roles and experiences with one another. I’m sure Jack was much more appreciative of seeing Daddy’s face smiling back at him, rather than my blubbering face looking down at him. Dr. Fulton said it would be about 90 minutes to 2 hours to perform the tests. We went down and got breakfast, found our seat in the waiting room, and proceeded to watch the clock as it slowly ticked by. After two hours and no news, I walked to the liason’s office for an update. She said, he was doing great, and they still had another test to do, so probably an additional 30 minutes. I walked back thinking, that’s not good. Why is it taking so long? And immediately I was worried, what if something was wrong, what if it was worse than they thought…what if…no!! No, I refused to go there, so I simply said, I’m sure they just want to be extremely thorough, this is for research, right?! After three hours, Dr. Fulton came around the corner, and asked if we could go to a room and talk privately, (in my head, NO, NO, NO…whatever you have to say, you can say here, out in the open, because it’s not bad) she found a room and we sat down. Dr. Fulton, Dr. Hanson, Dr. Laura were all present, I just rubbed my hands back and forth, as we prepared for news, Dr. Fulton began with, “well it took longer than expected because we came across something I wasn’t expecting”….I held my breath, “cataracts, Jack has cataracts in both eyes.” Cataracts? Is that all? Don’t get me wrong, we absolutely were hoping for no new obstacles, but considering what we know about this disorder, worst case scenario would have been finding out his vision was far worse than we had expected…so we will happily take cataracts over anything else, so I let out a sigh of relief. We know that cataracts can be fixed, and when you are a parent to a child suffering from an incurable disorder, you absolutely JUMP on anything that you can fix for your kid. Dr. Fulton had to reign us in, because we immediately went to, how soon can we do surgery? How invasive is it? Have other kids gone through this? What is the recovery time…etc? She suggested we get a second opinion, (mind you there were three doctors with Jack during his sedation/testing and they brought in a fourth to confirm the cataracts), but we will reach out to our Genetics Team and Ophthalmologist to plan the best course of action for Jack.

Dr. Fulton, Dr. Hanson and Dr. Laura’s findings were as follows…

1. Jack scored the same as he did on the striped card test, which we are incredibly happy to hear!
2. He does have cloudy corneas. (nothing new there)
3. If we were to look at an object 150 ft away from us, Jack would need to be about 20 ft away to see that same object. (results from EEG test)
4. Cataracts were found in both eyes, and surgery will happen in the future. (new information)
5. Jack’s retina’s (the area that ML4 takes first) are 20% deteriorated at this point. (new information)

We will take all of this information, and share it with our team in Ohio, and hopefully come up with a plan, that works best for Jack in the long run.

On Wednesday, we traveled to Massachusetts General Hospital to meet with Dr. Misko and his team. Dr. Misko is a Pediatric Neurologist, and works closely with ML4 patients and their families. Meeting him was awesome! He and his team were so great with Jack, they video taped the appointment, and Jack played and laughed his way through the meeting. As parents, it’s wonderful to see individuals interact with Jack, and bring out his ornery side, instead of staring (like we encounter most days) they engaged, they acted silly, they made us feel at ease. We answered a slew of questions, timeline, progression of disorder, how we came to the conclusion we were dealing with ML4. Again, Jack is number 5, but at this appointment, he was Jack. And it was simply beautiful. Dr. Misko is working on creating a chart for patients with ML4 or something similar, so we can have a more appropriate way of charting Jack’s progress, or comparing Jack’s milestones with individuals sharing a similar journey. As parents to a child with extraordinary needs, this was WELCOMED news. I mentioned above, Dr. Hanson explained Jack’s vision to us and compared him to a typical three year old child. We dont need constant reminders of how far behind Jack is from his peers, we live it every single day, and when a Doctor says, well Jack is measuring down here, and kids his age are way up here, it breaks you, it drives that sword deeper into your heart, it pours salt on an open wound, it just feels heartless. Dr. Misko rated Jack a 4-5 out of 5 (Just comparing ML4 patients), where one doctor sent us under water, there was another, pulling us out. Balance. Dr. Misko asked to see all of Jack’s records, which we are happy to send his way. He said in most cases, for FDA to approve drug trials, there needs to be a medical trail, and since ML4 was ONLY discovered 18 years ago, we are still in the early stages. They are hopeful, that by using Jack’s medical records from birth-now, they can create a timeline, a succession of events, progression of the disorder, to hopefully move along the process.

While visiting Dr. Misko’s office, Jack was scheduled to have some lab work done, he asked if we would be open to also have blood drawn, which would be used for Biomarking Testing. The importance of biomarkers continues to grow in all areas of clinical practice and, whether to predict, diagnose, or monitors disease, biomarkers are useful in every step of patient care. A biomarker will be used to see how well the body responds to TREATMENT for a disease or condition. Do they even need to ask? Here, take it all, anything that will help propel this research forward, in hopes of helping, not only our sweet boy, but all children living with ML4, no question, we are behind it 100%. Jack was amazing, he’s had so many labs done in the last three years, that the kid doesn’t even flinch when they stick the needle in his arm, I’m pretty sure that’s rare, because the nurses all commented on how he wasn’t crying (despite my poor attempts to apply pressure to the area post needle, which resulted in additional blood loss)…#momfail.

After meeting with Dr. Misko, his team walked us over to the lab, where we got to meet with the individuals working on finding a treatment or (God-willing) a cure for ML4. The elevator ride up, my heart was racing, no words for how it feels to know in a few seconds you’ll be meeting individuals working tirelessly for your son. I could feel a lump in my throat start to form, I suppressed the tears, and shook hands with Dr. Yulia. She was so sweet, and doted on Jack. We toured her facility, and chatted about the process (which went totally over both, Brett and my heads) of trying to uncover successful treatment plans/options. There are so many questions you should be asking, but you really dont know what to say…”Is there a chance, like how close are you to finding something that would be beneficial for Jack?” Apparently, I only ask the loaded questions, but deep down, we just wanna know, is there hope? She responded as best she could, they are working hard to find a treatment for Jack, they have seen some promising results from the mice they are testing, but haven’t tried anything on humans. There is so much red tape to work through, to get FDA’s approval for clinical drug trials. She said in many cases, patients (individuals participating in studies like these) begin to taper off, the process, the journey is a long one, and people can easily lose hope, especially those who have been walking this path for 18 years. I can’t imagine. The last two years that we’ve walked this path, have been hard, both emotionally and financially, it definitely takes a toll on your spirit, you harden to the outside world, You build walls to protect yourself, because watching your three year old struggle daily, is heartbreaking. When we were leaving Dr. Yulia’s lab, Brett and I embraced her, thanked her for giving us hope, even in the slightest, hope is all we have to propel us forward. A single word, we latch onto, to move us deeper into this journey, never knowing where the path will take us, but trusting in God’s love for us, every step of the way.

We couldn’t have been happier with our experience in Boston, although we uncovered some additional obstacles Jack is dealing with, we are confident in the individuals working towards treatment. Coming home from this sort of trip is tiring, the mental and emotional strain you go through is exhausting. We have recovered, and are marching forward, therapies for Jack continue, and we wait to hear from our genetics team on the next steps to take with Jack.

A huge THANK-YOU to those of you who so generously donated to the ML4 organization. Our trip, this research study is being funded by your dollars. From the bottom of our hearts, THANK-YOU! Please don’t stop…continue to advocate for our sweet boy, raise awareness any chance you get, arm yourself with knowledge, so if you are given the opportunity to educate, you can! Any help we get on that front, lessens the load for us. This is so rare, that many times, it feels like we are isolated. Brett and I won’t ever stop searching for ways to help fund, find and participate in research studies. We live each day, hopefully, hoping for hope.

You can also donate to help fund research here: http://ml4.org/donate/

-Jack’s Journey-9

September 8, 2019

Original post date: January 2018

Hi there,

As promised, here is a post about our journey to Dallas, and where the future is taking Jack and our family.

Mucolipidosis Type 4, is an incredibly rare genetic disorder/disease, there are 80 individuals worldwide living a life similar to Jacks. Eighty. In. The. World. That means you would have to meet roughly eighty-six million five hundred thousand individuals before ever bumping into another person like Jack. That’s twenty million more than the entire population of the United Kingdom. It’s that rare.

In December, Jack participated in the ML4 research study at Baylor University in Dallas, Texas. While there, he underwent another brain MRI, in addition several therapy sessions, focusing on PT, OT, Speech and a Neuropsychology evaluation. His MRI went beautifully, he took to sedation like a champ, and whatever cocktail they prescribed him, was the best yet, he came out of sedation better than ever, which allowed us to capitalize on all of his appointments. His sessions with the neurophysiologist, physical, occupational and speech therapists went well, he warmed up to each of them, and cooperated like it was his job….the kid has been doing this lifestyle for well over a year. I think it just seems so natural for him. We have yet to see the reports from those individuals, but know they are being sent to our genetics team here in Ohio, and we will go over them in February when we meet for Jack’s 6 month check-up.

What we learned…

In addition to the number of individuals living with ML4, we learned that Jack is their youngest patient in this study, the oldest is 25. Based off the Doctor’s interaction with patients like Jack, he was very direct with his expectations.

Jack will never talk.
Jack will never walk or at least not without some sort of assistance–walker etc.
Jack will never be independent.
Jack will never learn to use the bathroom.
Jack will go blind.
Jack will continue learning and progressing, but in time, that will stop, and regression will begin.
Jack’s cloudy corneas will improve, but it won’t matter because his retinas will deteriorate.

Jack understands and comprehends a great deal more than you would think (we 100% know this). He is pretty ornery and engages and reacts to his siblings, in a typical sibling dynamic.

As I sat on the couch next to the Doctor, listening to him deliver the “facts” things Brett and I already sort of knew about this disease, I asked him—this study, it’s ultimately geared towards finding a cure, or at least a treatment, right? He said, yes, but we want to understand why, or how these particular genes are mutating, but, yes, they are working towards finding treatment/cures for this, in the form of gene editing. The goal in editing, would be to reverse the effects, and for the patient to live a “normal” life. He said he didn’t want to give me any false hope, and commended Brett and I on our “attitude” towards this situation. The “situation” being, Jack. The plan would be for us to go back out there at the end of this year, to follow-up and repeat the tests we did at our last visit. While there, we were given new contact information regarding a research study going on in Boston, that focuses primarily on the eye portion of ML4.

Our takeaway…

We’ve been on this journey for awhile now, and believe that there is a reason for everything, every path you take, will lead you in the right direction. That’s what I am taking away from this experience. This particular Doctor focuses on experiences, interactions from other patients like Jack, he’s the type of Doctor that will give you the facts, as he knows them. He doesn’t dabble in the magic of hope, and that’s ok. Really, it is. I think it’s incredibly healthy to experience doctors that are blunt, to the point, and refuse to give you something to hope for…it keeps you in that survival mode. Will we go back and repeat this study? Ehhh…probably not. We are still praying on it, and hopefully will make the best decision for Jack. Like I mentioned before, we were given a new contact for the Boston study, and have since connected via email and phone. The study focuses a great deal on the eyes, and for many of the parents whose children are suffering from this disease, watching a child lose their vision is heartbreaking, and comes with a new set of challenges. The study is looking for a way to correct the deterioration of the retinas or at least slow it down, they do offer a small part of the study to the brain. However, based off of their findings, the brain remains stable far longer than the eyes, therefore they feel the priority is saving the vision, working towards a treatment/cure for that aspect of ML4. We are intrigued by this study, and are in the planning stages for a trip to Boston, so Jack can participate in this new study.

Life for us, is hard. The doctor was impressed with our “attitude” considering our situation. Attitude? I really don’t know how else to feel. We love Jack, so very much. Of course we will try and put our best foot forward. We will exhaust every opportunity out there, to advocate on Jack’s behalf, always. Despite our life being very different than we imagined, we will look for the good. Through setbacks, we will find a way to stumble ahead, through tears of pain, we will also have tears of joy. We will continue to put our faith and trust in God, and I know, He knows, there will be days where we doubt our path. We will push forward, always. As a mother, I am amazed at Jack’s strength, what God has called him to do in this life, is great. So great, that I feel lucky and blessed to witness his calling firsthand. Of course, I wish life was different, of course I would love to see my boy running along with his brothers, jumping up in my bed, calling out “mama” from his bed. My reality is so different, but with each new day, we are handed more graces to live this life.

Acceptance…

Brett and sat down around the new year, to discuss what, if any resolutions we wanted to make, and we both agreed that this year, we wanted to focus on acceptance. We want to go into this year, accepting that our son has this horrible disease. Accept that this is our life. Accept that normal for us, is very different than normal for some of our friends and family. Accept that we have to put our old dreams behind us, and focus on making new ones. Accept that we are living this life, because God has called us to do so. Accept that we are parents to a special needs child. Accept that we will grow into this parental role, with grace, understanding and strength. Accept that it’s ok to cry, it’s ok to be sad, it’s ok to be angry. This is part of our journey, we will graciously welcome those happy days, and try not to fight so hard against those rough days, accept them as they come.

As a mom, there are these rare Sundays, where I can actually hear the Gospel and Homily at Church. Where I’m not shooting death glares at my 4 year old who is in a (shouting) whisper saying…PEE, PEE, PEE….or my two year old isn’t throwing his books on the ground, you know that super fun game all kids play…or my 5 month old who isn’t screeching for delight, or grunting because this is the appropriate time to go potty. Those rare sundays where I can hear, and relate to His teachings. This Sunday, the focus was doing God’s will. And it struck a chord with me, as I was holding Jack on my lap, he looked up at me, and smiled, I choked up….Jack is God’s will for me (for us). God has called me to be his earthly mother, to care for him, to love him. Knowing God’s will, brings peace in times of suffering. When you’re in communion with Him, God will lead you to fulfillment of His plan, always.

Thank You. Thank You to those of you who don’t look passed our situation, or give us that “he’s such a happy camper” phrase, as if that makes all the pain and heartache disappear. Don’t get me wrong, our boy (well all of our boys) are generally very happy. It takes a special person to recognize our situation, and know that it is a daily struggle, that this life is and will continue to be heartbreaking. To applaud us, to cheer for us, but more importantly to support us along this journey, those are the people we hold near and dear to our hearts. Without you, without your continued love and support, we would not be able to withstand the storm. We are indeed private people, and allowing us this forum to share our journey is therapeutic for us, in one swoop we can give you a peek into our world. We have a good days and we have bad days, some days you can ask me about Jack, and I will happily tell you everything, other days, I’ll break down and cry, it is not only a physical exhaustion we feel, but a mental and emotional one as well. Please continue to pray for us, for Brett and I, as we continue to navigate through this life, for ease of the stresses and burdens that try and pull us apart. Pray for our boys, as their roles as siblings differ from many of their cousins/friends. But especially for Jack, for his comfort. For the doctors who are looking for a treatment or perhaps even a cure for Jack’s genetic disorder. We can’t thank you enough, and appreciate you taking time to invest in Jack’s journey.

I’ll leave you with this…

-God saw all he had made, and indeed it was very good.-

Genesis 1:31. God knows all, He sees the picture from beginning to end. He knows our life, all the intimate details, our times of joy, our times of heartache, He has seen every part of it, and it’s very good. I’m holding onto this, I may not be able to see the big picture, but He does, and I’m putting my faith and trust into following God’s will. Always.

Wishing you a beautiful and healthy New Year.

-Welcome Home-

August 28, 2019

Hi there!

Welcome to

I’m over the moon you found me in my little corner of the blogosphere world!

I’ll keep the introduction short, so here goes; I’m Natalie, the girl behind the blog.

I’ve been married to my husband Brett, for almost 9 years, together 16 years. We have three handsome boys, Liam (6) Jack (4) and Theodore (2), and they keep this stay at home mama busy! Yes, I traded in a job in management, to manage these little babes. I love a good sitcom, Everybody Loves Raymond is my favorite, my guilty pleasure is trashy TV, where are all of my real housewives of anywhere lovers?? You can bet I enjoy anything HGTV, especially during this crazy beautiful season of building. We recently sold our starter home in the city, to build our forever home in the country for reasons beyond our control. I love Ohio weather, we get to sample all the seasons, but Fall is hands down THE BEST, we had a big Fall wedding, complete with pumpkin centerpieces. I wish I loved to travel, but I get motion sickness something fierce, that being said, I enjoyed our Ireland honeymoon. I love a good beach, Destin, FL to be exact. My favorite book is Jane Eyre, I’ve read it more times than I can remember. If you haven’t heard of it, I encourage you to go pick up a copy. I didn’t drink coffee until my late twenties, I’m sure having our first child around the same time is just a coincidence. Trying my best to master this motherhood game while aspiring to find joy amidst the chaos!

Here is a sweet snapshot of our little cottage, as you can see, she’s still under construction, we have big plans for her, fingers crossed it will be complete (livable) early Fall. I can’t wait to share how we take our builder grade home and customize it to better fit our personal style. Would you believe me if I told you this wasn’t even the house we started with, or the land? More on that later when I share all about Our Building Journey in coming posts. Feel free to follow along on Instagram @our_whitecottage https://www.instagram.com/our_whitecottage/

My wish for this blog, is simple, I want to share our lives with you. The good, the bad and everything in between. I want this space to be an outlet, where we can cheer on one another as we navigate our own story. My story? I am a stay at home mom, married, with three boys. We are building our forever home on a couple of acres in the country. I am an introvert to my core, I observe, before I engage. I am a leader and prefer to take charge of situations. However, if I were to peel back another layer, I would say; I am a mother, fighting for her son, who lives with a rare genetic disease, that currently offers no cure. The decisions we make in our lives now, (such as building a home) all stem from our son’s rare disease. (if you wish to know more, check out his story on IG @lovingjackhenry http://instagram.com/lovingjackhenry

Thank you for stopping by today, drop a comment below and tell me a little about yourself. What’s your story?