A LETTER TO OUR LOWE SYNDROME FAMILY

This month I had the privilege of writing an article for the Lowe Syndrome Association Fall newsletter. This is my letter to all our Lowes families who also walk a similar journey. We are so thankful for you all!

Seven years ago when we raced to the hospital to welcome our 4th child into the world, my gut told me this time it would be different. Even as he was growing in my womb, I just knew something wasn’t the same this time around. 

You probably all have somewhat similar stories and emotions from when you received the life-changing diagnosis. Our Zachary saw his first specialist at 3 days old and it was almost 3 years and countless doctor visits before we received the diagnosis of Lowe Syndrome. I’ll never forget where I was that September afternoon when I received “the call” from the doctor that changed our world. I cried lots of silent tears on the phone while listening to the Genetics Counselor explain the test results and began to learn what was next with a diagnosis like this.

This journey you and I are on as we fight for the best life for our boys is hard. The appointments are endless, the fear of the future is terrifying, and I feel like it’s not going to get easier. Zachary has reached some huge milestones in the past year! He learned to walk around his 6th birthday, made it through a very tough double hip surgery, and is now walking better than ever before! We are so proud of his fight and determination.

While we celebrate the walking and the fact that his eyes and kidneys are currently stable, life seems to be getting harder in other ways. It’s the “other side” of parenting I didn’t understand until now. The language barrier with Zachary not being able to speak is so very hard. The ugly behaviors I’ve feared and known would come are showing up and countless behavior therapy appointments have been recommended. The feeding pump errors, beeps, and wakes me up throughout the night. Are you tired? I’m exhausted. 

But oh the amazing miracles we’ve witnessed in 7 years! Amidst all of the hard things we face, don’t you feel like as parents of a Lowe Syndrome boy that we’ve been given a gift? Who else gets to celebrate as big as we do when our son holds up his head or learns to sit and crawl? You and I get the opportunity to recognize the simple and celebrate the beautiful that parents of a typical child often miss.

Truthfully? I don’t know if I would change a thing. Absolutely, I would love for Zachary to live life the same as other 7 year olds - playing on the playground, reading and writing, having play dates with other kids his age, the list goes on and on. But the joys our son brings each day are massive, and our family of 6 wouldn’t be who we are today without our beautiful Lowe Syndrome boy. Which means I’m thankful for, yes, a difficult syndrome. 

I don’t think I could be as strong as I have been without all of you, our Lowe Syndrome family. With social media as the glue keeping us together, it’s a beautiful thing to have someone who understands just a click away. We pick each other up with a simple Facebook comment, share photos of our beautiful boys, and link arms when this life we live gets really really hard. I’m thankful for each and every one of you!


We’ll get through this. Together!

Life Lately // A Zachary Health Update

I'm well overdue for another life lately post. The last time I left you was a couple months ago when we were deep in the throes of Zachary's hip surgery recovery. I'm definitely happy to say those days are behind us! Zachary's hips have healed nicely and new bone is growing in where they cut and moved things around in there. He has had regular X-rays to re-check and we've been cleared to not go back to the see the surgeon for another 6 months where at that time they'll begin the talk about his follow up surgery. Yes you read that right - he requires another surgery approximately a year after the initial surgery to remove the plates and screws they have put in. 

Recovering and re-gaining his walking and standing skills have been a bit harder that expected. He's re-learned to crawl but had some progress delays due to unexpected issues with his feet. We will be getting new foot braces next week to hopefully help his feet. 

I am happy to say that we witnessed a little miracle this morning as he briefly stood on both feet! I quickly snapped the picture below before he knew I saw what he was doing. That's a HUGE little glimmer of hope in that picture. He'll get back to walking was eventually, I just know it. 

While we're talking about Zachary, I'll try to quickly share our last couple of weeks. Zachary seemed to come down with a stomach bug on a Saturday night and by morning was showing significant signs of dehydration. Due to his kidney concerns, the kidney doctor quickly got involved and asked us to go to the emergency room. After several hours of fluids and lab work, we were sent on our way.

Unfortunately the dehydration didn't improve and we were sent back to the emergency room 2 more times that week before they admitted us for a 4 night stay. After other symptoms began presenting themselves, additional tests were run and we learned Zachary had C-diff. C-diff is a very nasty "super bug" that can be commonly caught by those frequenting a hospital or who have weakened immune systems after antibiotics. While C-diff can be quite hard on the kidneys, Zachary's kidneys seemed to have hung in there nicely. We're not exactly sure when or how he caught the nasty bug but thankfully with some strong antibiotics Z seems on the mend. 

The only remedy to kill the nasty bacteria spores that can linger on a surface from months to a full year is bleach. Needless to say, I've been on a bleach disinfecting rampage and have even had nightmares about the pesky germs. 

We are grateful God has protected Zachary's kidneys amidst a week of frustrating dehydration and the C-diff bug and we are pretty much staying away from people and germs for the next while. It's somewhat common for the illness to return and so we are being extra cautious to keep Zachary and his weakened immune system safe and healthy.  When you have a kiddo that's extra fragile, many things are simply not worth the risks!

Want a glimpse into our days? We've been picking up the vlogging camera again and you can see a little bit of our hospital stays on our YouTube channel or check out the video up here ^^^ or down below! 

Want to not miss a vlog? Head to our actual YouTube channel and you can click "subscribe" and then the little "bell" in the corner to be notified any time we post a video.

Needless to say life has pretty much revolved around Zachary's health for the past several months, but we are doing our best to make sure we find time with the other kids as well. They have all been so patient, caring, and helpful as we navigate what has been an unusually hard 4 months. 

If I could give you one quick piece of advice whether you have a special needs child or really any other things in life distracting you, it's to not forget to make time for the others in your life who need you. It may mean saying no to others and other activities, but in this moment here and now the most important people we need to be pouring into are those 3 big kids right there.

Something fun? We found a gem of a hiking place yesterday.  I have no idea why we've lived here for so long and have never ventured this this park. But it's now our little secret place that I have a feeling we'll sneak away to often. 

I hope you have a great Thanksgiving week! We're looking forward to the "hopefully" quiet week ahead.

10 Hospital Stay Tips for the Special Needs Parent

It's been flurry of activity around here this week and we leave for the hospital tomorrow! Between making sure the kids have all they need for school which is starting soon, planning meals and grocery shopping for the kid food next week when my mom is here, plus catching up on all the laundry, I haven't sat down a whole lot other than when I've been working my job.

Zachary had his final therapy sessions this week and we said goodbye to his therapist for the next 4-6 weeks. I'll admit I was a little emotional walking out of the therapists office. I think mainly because we have known about this surgery for so long and now it's finally here. I'm not quite sure I'm ready for all of this.

Monday will mark Zachary's 5th hospitalization and as I was thinking about "How to prepare for a hospital stay," I thought it'd be best to introduce you to one of my dearest and oldest friends Kim. As a teenager, she was more like my older sister. Oh the stories she could share. :) I'm pretty sure Kim was the one who taught me to TP a house. I'll never forget going with her family to drop her off at college and the trips to visit her in her dorm. Kim also inspired me in my walk with Jesus as a young stubborn teenager.

Thankfully social media has allowed us to stay in touch and both having special needs children has brought us back together amidst living thousands of miles apart. Over that past couple of years, Kim has spent, added up, almost an entire year living at the hospital with her daughter. If I could learn from anyone about hospital tips, she's the one to turn to.

After our messaging back and forth, here are...

Top 10 Hospital Stay Tips for the Special Needs Parent 

1. Ask about Ronald McDonald House room right away. 
    These rooms are in high demand! It can be a few days to get one.

2. Be a part of rounds every morning and don't be afraid to give your opinion. 
    No one knows your child like you do!

3. Take your own pillow/blanket for sleeping in the room.
    This is something I had never thought of. Duh! This is why I have friends to teach me these things!

4. Take a few of your child's favorite things from home.
    We already have a list started of Zachary's favorite toys and blankets to remember. He LOVES his rotating star globe at night and you can bet that's going on the list too. Anything to make him feel a little more at ease.

5. Take some of your child's tube formula if they are on it.
    Zachary and Kim's daughter are on a whole food formula called Nourish that they get through a G-tube. The GI doctor told me the hospital will "probably have it" but I'm not taking any chances. We'll be throwing a box of Nourish in the car with us just in case.  Zachary is also on an obscure kidney medicine that we're taking some of just in case it takes them a bit to get it in the pharmacy. Definitely not something I want to risk going without.

6. Ask if your favorite nurse can "primary" your child so that they will have your child every time they work.
   Once again, Kim to the rescue! This would have never crossed my mind.

7. Take a walk outside every day.
    It will help you avoid "hospital psychosis" or going a little nutty from never getting out.

8. Seek out healthy options for meals.
    Even bring your own healthy food! We will be bringing supplies to make our morning Shakeology and using the refrigerator in our hotel. Many hospitals have family gathering rooms on the hospital floors and will have a refrigerator you can use as well.

9. Find out if the hospital has a gym that family members can use.
    You guys know Peter and I love working out and it's not just for our weight. It's a complete sanity saver for me. We will be taking our computer so we can do workouts online and will definitely track down a fitness room either at the hospital or the hotel.

10. Reach out for and utilize your support system.
     This one is VERY hard for me. I'm a "do it all myself" and "I'm tough, I've got this" kind of mom. I'm already learning how much I'm going to need my "people" to get through Zachary's surgery and recovery.  The special needs journey in general is a hard hard road. We can only do it alone for so long.

If you are about to face a hospitalization with your kiddo or are suddenly facing an unexpected season in the hospital with your child, I hope you find these 10 tips to be sanity savers. Hang in there tired mama!

For probably the quickest updates on Zachary, especially next week, follow my Facebook Page or Instagram. And we plan to upload video updates to YouTube so you can see how it's going.

-Jess

SPECIAL NEEDS SIBLINGS // A BIRTHDAY CELEBRATION

Last week we celebrated 6 years with our amazing Zachary. The past 6 years have been filled with countless doctor visits, book draws, different tests, therapy appointments, and lots of emotions. The years have also overflowed though with countless laughs, smiles, moments of gratitude, and awe. Zachary is a fighter and has reached milestones many didn't think he'd ever meet. God has been so good to our family and our precious boy. 

May 4 always comes with strange emotions for us. Zachary doesn't want a cake with candles, could care less about opening presents, and has no understanding for what all of the excitement is about.

What May 4 is, though, is a day to celebrate the blessing of having Zachary in our lives. We celebrate how far he's come and how far God has brought his tiny body in these short 6 years. You guys, he's gained so much weight compared to a year ago and is WALKING! A-ma-zing!

So how did we celebrate Zachary this year?

1. Chick-fil-a!

Zachary doesn't eat much at home other than soup and cottage cheese. (Thus we're so thankful for his G-tube!) He doesn't even like to sit at the table with us when we eat, so how could we even have a family birthday dinner? Why Chick-fil-a of course. His favorite!

We met Peter's family and some very dear friends from church at the restaurant. We had balloons, Zachary got his fill of chicken, and survived the excitement and noise for a little bit...before Peter had to take him to the car and escape back to the quiet. Zachary can only handle noise and activity for short amounts of time. He's definitely a homebody who prefers just his little family of 6.

2. Siblings

Here's the core of why I'm writing this post. Peter and I decided to do something a little different and unique this year and celebrate our big kids on Zachary's birthday. Being a sibling to a special needs child is not the easiest. Our 3 older kids are extremely patient, loving, helpful, and have put up with so much these 6 years so far. Our middle two kids have sat in plenty of waiting rooms and through long appointments. They've had to wait patiently to get a word in while I spent excessive amounts of time on the phone with doctors and nurses.

While his oldest brother is focusing on his final years of high school, Zachary can melt even the biggest kid of the family. The love 17 year old Travis has for Zachary is beautiful to see.

Our kids have put up with numerous moments where we had to give the majority of our focus to caring for Zachary. I hate to admit it, but sometimes they just have to get ignored. Yet they never ever complain. When Zachary does something new and exciting? They're just as proud and excited as we are. 

On Zachary's birthday, we decided to turn the tables a bit and celebrate our big kids. We took the day as an opportunity to thank each of them and celebrate what amazing "Special Needs Siblings" they are to Zachary.

Each kid received a card from Peter and I with a special message just for them and a small non-birthday present from us. Since there isn't necessarily a Special Needs Sibling Day, we created our own! And I've heard from each of them how much our gesture meant to them.

This coming year doesn't look to be filled with all sunshine and roses with a major surgery later this year for Zachary. But he has the best big brothers and sister anyone could ask for to love and support him and us through it all!

Travis, Kaylee, and Daniel - you're the BEST! You are the heroes in Zachary's life who don't get near the credit you deserve. 

Zachary is better because he has each of you!

My Honest Feeding Story

Once a beautiful new baby is placed in your arms, life as a mom has arrived! Whether this new little bundle of joy is your 1st child or your 5th; the journey of loving a new little human, taking hundreds of baby photos, non-stop feedings, countless diapers, and sleepless nights has arrived!

Along with all of the love and excitement comes a new season of fears and doubts.

Am I doing this right?
Do I breastfeed or bottle feed?
Why is he crying?
I'm so tired, can I do this?

As a mom of 4 children who all survived the newborn months, let me just assure you...

You can do this!
You'll get sleep again one day!
You're not a failure!

The topic of how and what to feed your precious baby can be such a controversial one. Mothers can be found deep in debates about whether breast or formula is best and many aren't afraid to boldly share their opinion and choice.



When The Honest Company asked me to share my feeding story, I didn't quite know what I would say. With my first 3 children, I nursed for the first several months and then supplemented the final couple of months before they turned a year old with formula. Feeding each of my babies felt very typical and normal, and they grew as the doctor's growth charts said they should.

When our 4th kiddo burst into this world, nothing was typical or normal. Zachary's birth was the  start of a completely new journey. Our sweet Zachary is now a busy special needs 5 year old with quite a long list of doctors appointments to stay on track with his medically complex syndrome, Lowe Syndrome.

During the early newborn months, we had no idea about the complexity of Zachary's needs but we did know things weren't quite right. Zachary had 2 separate eye surgeries during his 2nd month of life. He was extremely small and struggled to grow.

I distinctly remember trying to nurse Zachary in the dark and quite hospital room following one of his eye surgeries. I was tired, lonely, and frustrated that Zachary seemed to not be able to eat as much as I would like and that he seemed to just not be growing. His body was so frail and small. The decision was made a week or so later that for whatever reason my breast milk was not enough and we started him on formula. I'd never had one of my babies started on formula so early on and I felt like a failure. Looking back, I wish I could tell my younger self that it was not at all my fault. Symptoms of Zachary's syndrome is just that - weight gain is and will always be a constant struggle.

When Zachary was 4 years old I felt those failure feelings surface all over again as I sat in the surgery waiting room while my son had a G-tube placed. From breast milk not being enough, to formula loaded with added calories not enough, to table food also not being enough to make my child grow, new extreme measures had to be taken. I felt like I hadn't tried hard enough.

Now 5 years old, Zachary's lifeline to nutrition and weight gain is formula fed through a G-tube going straight into his stomach. Sometimes breast isn't best, formula isn't best, and sometimes crazy surgical forms of feeding are best. And it's okay!

Remember those fears we feel with our newborns and the assurances I shared? Guess what! They still hold true!

Whether you breast feed your little one, mix and shake bottles of formula multiple times a day, or find yourself using tubes, syringes, and a pump to feed your little one. It's ALL okay!

You're not messing your little one up!
You're not a failure!
You can do this!

It's not about our preferences or personal opinions all the time.
Obviously more important is the health and safety of our precious little ones, who we wouldn't trade for anything in the world.

Be sure to visit The Honest Company for safe, eco-friendly, and affordable feeding options for your baby.

Follow our family's journey with Zachary on YouTube HERE.


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All About Therapy - Part 1

This world I now live in with a special needs child includes hours and hours of therapy appointments.  Zachary's first therapy session began when he was 4 months old. He was teeny tiny and the muscles in Zachary's body were so limp and that he could not even hold up his head.

We started weekly therapy sessions a couple of years before we even knew if or what syndrome Zachary may have had. What we did know was that things just weren't right.

Zachary is now 2 months away from turning 6 years old. Together, he and I have attended over 68 months of therapy. That's 292 weeks of therapy sessions and we're talking at least 3 appointments a week so that's a guaranteed 876 appointments. But wait! There were 2 rounds of intensive therapy where he was attending 7 sessions a week plus the other 2 a week so 9 sessions PER WEEK. Then there's the in-home therapy we did for a while. After doing a little math, our little man and I have together attended around 1,000 hours of therapy appointments in his almost 6 years. The crazy thing is, we're just getting started! I'm sure there's thousands of appointments to come in the next 6+ years.

I do that math not to make you sound impressed, but to let those of you who walk this same path know that you're not alone! If you're on a similar journey, you know that as a parent we'll do whatever it takes to help our kids grow and progress - even if it is sitting in an uncomfortable chair for several hours every single week. It's SO worth it!

Therapy appointments are fun, stressful, amazing, eye-opening, bring smiles, and bring tears. Zachary is stubborn, wants to do everything his way, would prefer not to be told to work hard or be pushed or stretched to learn new things, has a scream that can fill the entire therapy clinic, and a giggle that when it creeps into a therapy session will make tears of joy well up in my eyes.

Therapists are amazing people. They've become our friends, support system, biggest cheerleaders, and advocates for our children. Our therapists may make our little ones cry at times but it's all for pushing them to be better, stronger, comprehend more, speak better, eat more, and react to situations better. The list is long.

If you are a therapist of any kind, you are a super hero. If you have been one of Zachary's therapists you are a ROCKSTAR and have more patience than I can begin to describe!

Therapists see the best in our kiddos, seeing the potential when a tired mom has no faith left that even more progress can be made. 

During our Special Needs Life Hacks Webinar this week, Melissa and I talked therapy. There's so much to cover when it comes to therapy that we divided this topic into 3 parts. In our first episode we shared our therapy stories and about the different types of services our kids get. You can watch below or check out the Special Needs Life Hacks YouTube channel for the therapy video and previous episodes.

In the next 2 episodes, we'll share a glimpse into what exactly therapy has looked like for each of our different cases and try to cover many of the little details that are involved. Finally, in the 3rd session we'll chat about some of the heart level things that come up as a mom who is constantly taking her child to and from appointments. We'll even throw in our sanity savers to maybe help you too survive the therapy mayhem!

After spending 1,000 hours in a therapy clinic, I have a few "life hacks" I'd like to present to the hospital board. I think recliners for the parents and a coffee bar sound glorious! Can I get an Amen?!

How to Organize Medical Supplies and Equipment

Once again this is a topic I knew absolutely nothing about a short couple of years ago. I had no idea there were medical supply companies or that needed supplies would get delivered to your door. I also had no clue HOW MANY supplies were required to take care of one child.

Zachary receives deliveries each month from 3 different medical suppliers. The biggest delivery we receive are the supplies for his g-tube feedings. Boxes and boxes of formula, feeding bags, tube extensions, gauze, syringes, and more fill the closet in Zachary's bedroom. 

The second delivery arriving usually a week later is boxes of diapers, diaper liners, bed underpads, and diaper cream. What an AMAZING blessing! Typically when your special needs child turns 3 or 4 insurance will pay for diapers and diapering supplies. Zachary's pediatrician got the ball rolling the prescription for these.

Growth hormone is usually the final delivery each month. The medicine arrives on ice packs along with the needed needles and alcohol prep pads.

I'm guessing I'm not the only one who find's it super easy to bring the delivery boxes in the house and then get busy with the rest of the daily tasks and leave the boxes sitting in the living room. My first tip is to deal with the medical supplies and boxes right away.

On our SNLH Webinar this week, Melissa and I are shared our experiences with medical supply companies and tackling organizing the literal piles of boxes of supplies that arrive each month. 

Check out the webinar below...

Missed previous episodes? Visit the Special Needs Life Hacks YourTube channel.

What a Day :: Special Needs Stories

As you may know, our family has dabbled in sharing our stories in video form.

As I sat down the other day to download and edit footage from a fun day we had just had, I sifted through clips from the day before. Zachary and I had gone through a busy and stressful day and I almost deleted it all. I hadn't even filmed a whole lot and it was a plain emotional day.  

But before deleting I remembered our "why" of YouTube and my website. I remembered the people who have reached out to us for questions about our journey and experiences after sharing our stories in both video and written words. 

If you also live this crazy life - just know you're not alone! 

Here you go...a glimpse into a not so perfect day. WATCH BELOW...

A Special Needs Daddy's Perspective / Patience & Time

As I began to formulate what I wanted to write about in this post, I asked myself “What virtues do special needs parents require in order to do what they do?”

It wasn’t difficult for me to come up with a long list. And as I ask this question, I’m sure that it would not take long for anyone who reads this to do the same thing - even with a little exasperation and a little mental thought of “You have no idea!”

There are 2 virtues that hung out in the front of my mind as I thought through the 5 years that we’ve had with Zachary so far. Patience and Time. 

Whether it was waiting nearly 3 years for a diagnosis, or our daily watching Zachary walk with his walker and wanting to yell “Dude, just let go and walk!” we have needed so much patience and time over the years.

The hard part for me about writing this is knowing that the amount of patience and time required of me is really nothing compared to what is required of my beautiful and awesome wife. And I know that our story pales in comparison to the many out there who are in far more difficult situations than us. (Serious high-fives to all of you!)

If you were to hang out in our house for a few hours here are some of the things you might hear. 

“Zach stop slamming doors!” 

“Zachary stop staring at the sun!” 

“It’s too quiet in here…Zachary where are you?!”

“Zach did you just poop again?”

“He’s throwing up again!”

I really can’t get mad at him - he’s just too cute!

Most weeks Zachary has at least one doctor appointment, if not multiple, in addition to his several therapy appointments a week. With these appointments come tests and test results. I think to a certain degree everyone knows how difficult it can be waiting for test results, especially when they can be life changing. So much patience is required while you sit by the phone waiting for the call with results. 

What we’ve learned is if they say 2 days, we try to lower our expectation automatically to a couple of weeks - keeping our anticipation down and irritation level at a minimum!

Lowering our expectations help with patience in many areas - such as trying to communicate with our mostly non-verbal child, waiting for him to learn to walk, the battles trying to get him to eat, the nightly time-consuming bed-time procedures, repetitiveness in playtime, and on and on. 

This doesn’t mean that we lower our expectation of him and how we push him to be better. It will always be our goal to improve communication and see him walk, it just takes a LOT of time!

On that note, that brings me to the other area I want to talk about, which is time. The amount of time that is required to take care of a special needs child is astronomical. For my wife and I it doesn’t seem to matter how much time we put in, it feels like we’ve not done enough. 

The natural reaction is to keep putting in more time with the hope we will improve his life. But somehow the only thing that happens is we seem to get more frazzled and our patience wears thin. There comes a point that the amount of time we put into our child begins to take away from other areas of our life that deserve our time. 

Here are some things that are hugely important when it comes to our time - areas that we’ve come to learn and can’t ignore.

1. Eating Properly: One of the first things that goes when time is lacking is eating properly. Not just eating, but getting the proper nutrition that our body requires. This not only helps us feel better, but adds energy to our life to accomplish the things that need to get done.

2. Sleep: This may simply mean breaking routine and getting extra sleep on nights we know we can, so we can be better prepared for those nights when we won’t get much sleep.

3. Quality time with the other kids: Kids have the incredible ability to adapt to any situation they are in, which makes it all the more important to set aside time where each of our kids can have our total focus.

4. Get-away time: Two things that have worked wonders for us are once a week date nights where we can focus on each other and relax, and once a year getaways to get a few extra nights of sleep and recharge.

We have found that when we intentionally try to maintain these areas of time not only does it improve our quality of life but it improves our patience with each other, with the kids, and with Zachary.

I do want to make it clear that we in no way think that we have it all together or that we can coast through life. We very much recognize that our journey with Zachary will always be an up-hill battle.

As I watch the Olympians, I see athletes dedicating their lives to their sport all for the chance at a medal, proving to the world that they are the best. For us, I see no medals or interviews about being the best in the world. Just a cute little boy who needs a lot of attention. 

As I take a step back, I smile. I hear on the TV about all the time and energy the athletes spend for those little medals. But those medals are really just going to sit around and collect dust and they will definitely never smile back! 

Our ultimate goals is to not be great in the world’s eyes but in the eyes of our Lord and Savior Jesus Christ who give us this promise...

“Whoever does it unto the least of these does it unto Me.” Matthew 25:40

-Peter

The Special Needs Journey - A Daddy's Perspective

I have a very special treat for you today. My husband Peter is breaking his online silence as it were and is sharing his special needs father's heart with you! As I read Peter's words and typed this post for him, I sat in our overstuffed recliner and wept. I'm SO excited for you to hear from Peter, my sweet Zachary's daddy.

If you were to have told me a number of years back that I was to one day be the father of a special needs child, I would have probably told you that I’m pretty sure that’s not a good idea. I most likely would have said that I’m not sure that’s something I could handle.

I remember many times growing up and coming across a handicapped or special needs person and feeling a bit awkward, not knowing how to interact or what to say. I’d instead find myself locating the nearest exit and high-tailing it out of there!

Now, however, things are very different. We were blessed with Zachary, a 5 year old boy born to us in 2011 with Lowe Syndrome. In short, Lowe Syndrome is a rare disease that affects only boys. Zachary has the mental capacity of a 1 or 2 year old with very little verbal skills and the physical frailty of an unhealthy 85 year old man. The chance of having a boy with Lowe Syndrome is about the same as winning the Powerball jackpot. But given the choice between having a half-billion dollars or Zachary, I would choose Zachary in a heartbeat even amidst the unknown difficulties - and even cleaning up his puke in the middle of writing this! Blah!

My reason for writing is to simply share with you some things that I have learned about being a father of a special needs child and why he is such a joy to Jessica and I and our family. These thoughts will in no way lead you to being the perfect special needs parent or provide you with more sleep at night, but maybe it will give you encouragement and make the times when you do sleep a little more peaceful!

I just told you I would choose Zachary over a half-billion dollars and you may have thought “of course you would! He’s your flesh and blood.” This is true, but this truth goes much deeper than the fact that he is my son. The truth is that God is all powerful and all knowing, that God is everywhere holding all things together including the heart beating in your chest, and that he is personal and nothing escapes his notice. So you and I must realize that God doesn’t make mistakes.

Let me say it again for my sake - God doesn’t make mistakes! Whether it’s something you see in the mirror or it’s your son or daughter suffering from something ugly that is out of your control and it breaks your heart, God doesn’t make mistakes. He doesn’t see Zachary as an “oops” or an “I didn’t see that one coming!” God sees Zachary as fearfully and wonderfully made. (Psalm 139:14)

I am reminded of the story from the book of John where we see two very contrasting views of a man born blind. (John 9) The disciples view was that it must be either because of his sins or his parents’ sins. Jesus’ view, however, was much different when he said “This happened so that the power of God could be seen in him.” This passage reveals to me that God doesn’t look at Zachary filled with regret at what He had made, but He sees Zachary as a portal through which His power can be seen! Not in this life will I really understand how this will all work or what God’s plan truly is. 

This also brings new light to Psalm 139 that God “knit together” not just the seemingly perfect human specimens of the world but also those who were born with sickness, disease, and disorders.

When I choose Zachary over all the treasure in the world, it’s not just because he is my son, but because it’s exactly how God wants him to be and God’s precious thoughts about him cannot be numbered. (Psalm 139:17)

It is my prayer for your family and ours that in the middle of difficult and hard to understand times, God would make known to you some of those precious thoughts that He has for you and your children. Knowing that in sickness, disease, and disorders, God’s power, whether we understand it or not, will be seen.

-Peter

Friends, this is just the beginning! Peter will be sharing his heart and what he's been learning as a special needs dad all throughout the month of August. I hope you'll come back!

Follow our family's stories in our daily vlogs on YouTube HERE!

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It's not my Fault - Fighting the Lies of the Heart

Our minds can play tricks on us, especially when raising children is involved. Add on to that all the responsibilities of raising a special needs child - all the appointments, the extra daily care involved, and especially the interrupted sleep each night and that’s a recipe for a mama meltdown. Well, maybe not always a meltdown but definitely a recipe for feelings of failure, doubt, frustration, and internal blame. 

I’m spending some time unpacking some of the myths I’ve faced as a tired mom of a medically fragile and special needs child. There’s many myths and lies that my weary heart can throw my way. Lies of the enemy that seek to knock me down.

Zachary received his Lowe Syndrome diagnosis when he was almost 3. After that initial phone call from his Genetics doctor explaining the positive test from a skin biopsy confirming the diagnosis, additional appointments were scheduled. At that first appointment in the hospital after his diagnosis, I was tested to see if I was actually a carrier of the Lowe Syndrome defect. A short week later I received the call that I was in fact not a carrier and that Zachary’s syndrome had randomly popped up. I learned I wasn’t genetically responsible for my 4th child’s defects, delays, and difficulties. I felt relief when those results were in - relief I wasn’t to blame.

Unfortunately that’s not the end of the games my heart and mind have tried playing tricks on me. I hear internal accusations that it’s my fault Zachary still can’t walk or is so delayed. 

Phrases swarm my head such as…

“You’re not giving your best as a parent.” 

“You’re not pushing him hard enough.”

“You’re too busy to help him learn to walk.”

“It’s your fault he won’t eat.”

“He won’t grow because of you.”

“You let him crawl too much.”

“You’re not praying for him enough.”

“You need to do more and be more for him.”

As much as these hurtful words seem real and true at the time, when I take a step back and breathe, I realize absolutely none of these lies are true. I know I am doing my best. It’s all I can do. I can’t actually make my child talk, walk, or even comprehend anything. I can’t force him to eat, make him stand, or even insist he call me Mommy. 

We spend time playing, I work on trying to help him learn to walk, I read him books and try to keep his attention on toys that stretch his abilities. But all in all, Zachary is at the the mercy of his harsh syndrome and is in God’s hands.

When I allow myself to step back and rest in Christ, I’ve been reminded again and again not only is this not my fault, but that the best I can do is keep my sweet boy well cared for, stretch his limits when he allows, work alongside wise doctors, pray fervently, and cling to the promises in God’s Word. 

When I fight the lie that I am too weak to be all that Zachary needs I remember Romans 8:26. “the Spirit helps us in our weakness.”

Romans 15:13 says “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” I’m here - trying to trust each day, and to be thankful for the blessing of our Heavenly Father’s joy, peace, and hope!

Will reading these truths completely combat my battles inside? Not all the time! Will I wake up tomorrow, head to therapy, and leave frustrated at the slow progress? Probably! Will I begin to hear the lies that it’s my fault? Most likely, yes. 

So I think I’m actually typing and processing these words and Scriptures for my own heart. Because when I wake up tomorrow and doubt all of this is my fault all over again? I’ll combat those lies and claim these promises once again - day in and day out. 

Are you also facing a hard road with your kiddo? Join me in stopping the lies in their tracks. It's not your fault!

-Jessica

Follow our family's stories in our daily vlogs on YouTube HERE!