GRACE TO BE SET APART

Christians are familiar with the concept of being set apart. We are not to love the world or the things in it (1 John 2:15) and we are not to conform to the world's views but be transformed by the continual renewal of our thoughts (Romans 12:2). John and Paul counseled us on how we are to be different.

But, as special needs parents, we can become even more separated from the life we've purposefully planned and cultivated. We get pulled in an entirely new direction and it might feel like we are being cast aside instead of set apart. Maybe Abraham felt that way. His familiar life was disturbed, shaken up and distanced, from everything he was accustomed to, brought to a new land, new people, and new experiences. It's not easy being a stranger. And special needs parents can feel like that too. We get redirected to a new journey with unexpected experiences, people, and places. We become a stranger, thrust into a new world. But just as Yahweh was with Abraham on his rerouted journey, He is with us on ours too. 

To be set apart means something has been removed from the collective. It's been separated from the pack for a purpose. Just as God purposefully set Abraham apart, God has called our special needs families to be set apart. It is not a mistake that God calls us out of our comfort zone and into the unknown. Notice in Genesis 12:1, God tells Abraham to go and Abraham does it. Abraham obeys and abandons the life he was comfortable with for one unknown and uncertain. Most of us got thrust into the realm of special needs with the same simple command. Go. Abraham left with no idea where his journey would take him. He had no certainty as to how things would turn out. He simply abandoned his future to God and trusted the call to be set apart, to be different from the culture he knew, and to trust that God would guide him along the way. 

Special needs parents have been called to be set apart, just like Abraham. We are expected to walk a different path than our neighbors, friends, & family. We are called to look different than even our closest Christian peers. This separation can feel lonely at times, but we should have confidence that God will give us wisdom and peace as we pursue Him, fully trusting in Him like Abraham did. 

When we fully lean into our Father and trust His plans, even though the journey may be difficult and demanding, we can take comfort in knowing our diverted direction is purposeful and pleasing to Him. The harder road is not the path for everyone. It has been chosen for you because God knows what He is doing and He will see you through. You have been set apart to take a different journey. Have faith in the path you are on. God will give you the grace to see it through. And even though we can't see out of the valley, we can trust the Shepherd is graciously leading the way. 

REFLECTION: 

1. In what specific ways have you felt set apart? How does today's reading offer you hope in that journey? 

2. Do you struggle with trusting God in the path He has you on? You aren't alone! Write out a prayer to God and thank Him for all the gifts He's given you, and let it be a reminder of His faithfulness even when you feel lonely and set apart. 

What Special Needs Families Can Teach Others in this Pandemic

The bewildering and unexpected times we find ourselves in today with the COVID-19 pandemic remind me so well of the trying times I found myself in when our special needs journey began. I can't help but draw so many parallels. 

Fear.

Trauma. 

Isolation. 

Grief. 

Finances decimated.

Worry about the future.

Everything familiar became unfamiliar. 

Expectations dashed. 

Plans destroyed. 

It's an emotional roller coaster of confusion and chaos. All of it out of control. Sound similar to the times the world finds itself in right now? 

The primary shock of the pandemic has likely worn off as we find ourselves weeks down the line from initial diagnosis, yet we are still reeling from the fallout. No one can predict the future. Doctors try when they have to deliver the bad news but it's just a guideline. There are so many variables at play that even the exact same brain injury in two different children can produce astonishingly different outcomes. This pandemic is rife with a virus that causes no symptoms to severe into death.  The future is uncertain and we can plan to the best of our abilities but must yield to the truth that we have never had control to begin with. This virus, just as the special needs journey, will morph and change us.

What are some truths we can hold onto that will help us focus in the midst of this global crisis.

1. God isn't punishing you. John said Jesus didn't come to judge the world but to save it. John 3:17. And Jesus said himself, "If anyone hears my sayings and doesn't keep them, I do not judge him; for I do not come to judge the world, but to save the world." John 12:47 God brought Jesus to save us, not to condemn us. God didn't bring Jesus to earth to inflict harm. In fact, Jesus did the exact opposite. Which brings us to point two.
2. Not one time while Jesus was here on Earth is it reported that he inflicted harm. Not as a punishment, not to bring trouble, not even as a teaching tool. We witness people, already suffering from the effects of living in a fallen world, coming to Jesus for healing. He healed everyone who asked. Jesus brought with him peace. Trouble comes from the world and Jesus says, "I have told you these things so that in Me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
3. Trouble will come! Accidents will happen. Does God teach, and rebuke, and correct His own? Yes. Does God hurl viruses at His people, causing untold amounts of death and suffering for us to come running to Him to receive comfort? What does Jesus say about that? Jesus mentions a well known tragedy when speaking with his disciples In Luke 13:4-5, "Or those eighteen who died when the tower in Siloam fell on them- do you think they were more guilty than all the others living in Jerusalem? I tell you no! But unless you repent, you too will all perish." Jesus is warning them to not think that those people deserved a punishment from God because they were evil. He says they are mistaken in believing that God sends an accident or tragedy to someone because they are a worse person than someone else. He is telling us not to be lulled into the misconception that tragedies only befall wicked or sinful people. He says tragedies can happen to anyone at any time! No one is immune. We will all face trouble. But take heart! Have peace! Think of the man born blind. Jesus said neither him nor his parents sins caused it. Jesus states the tragedy at Siloam just happened. It was not designed by God; not the so called "Christian karma" at work. God does not cause all things to happen but he does cause all things to work for his good. Romans 8:28
4. Our sweet pastor used to say, "Control is an illusion." It's true. The special needs journey will always be unpredictable. Such is life! Even though we think we've got everything under control, we never really do. Disease, job loss, financial loss, social distancing, are all similar to what special needs families encounter daily, not just during a global pandemic.We should be used to this. Enduring extraordinary circumstances while life goes on around you is the norm for many. But perspective changes everything. What are we doing with what we've been given? How do we respond to a world in fear? Where do we seek refuge in times of trouble?
5. God is still sovereign. Just because the world is facing an unprecedented virus, just because your child has a devastating diagnosis, God is still on the throne. His sovereignty is not diminished because a virus ravishes the population. Was God not sovereign when the angels fell? When the Israelites were in bondage? When people sin? When the disciples died for their faith? God does not need to control every movement of the fallen world in order to be sovereign over it. Just because he doesn't stop disease and illness before it starts doesn't make him any less of the great I AM.

If COVID-19 teaches us anything about God and his love, it should be this: Jesus is who we must look to. Illnesses, suffering, trials, troubles, are exactly what Jesus warned of. And the wages of sin, of our fallen world, is death. None of us get out alive. Jesus gives us focus for the future:

"And inasmuch as it is appointed for men to die once and after this comes judgment, so Christ also, having been offered once to bear the sins of many, will appear a second time for salvation without reference to sin, to those who eagerly await Him." Hebrews 9:27-28

Judgment comes after death. Not with a virus, not with a disabling condition. When we are in Christ, God remembers our sin no more. (Hebrews 10:17) What can special needs families teach the world during this pandemic? First and foremost, we really can relate to your feelings.  We also have to live in the here and now while facing our troubles. But we can face them easier when we trust that God is for us, he loves us, and he is still sovereign.

GOOD

Week Two
Day Four

What is the "good" Paul talks about in Romans 8:28 (we are on page 26 of Beautifully Broken)? The good, which Paul says serves a purpose even through suffering, is the conforming of our hearts & minds, our character, into the likeness of Christ Jesus. Verses 28 & 29 tell us that God works through our weaknesses, our struggles, our trials, to mold us & shape us into an Imager of Christ.

Suffering stinks. Life's detours take us off guard. We can doubt & struggle with God's goodness when these things happen. We might even think we're being forgotten or foresaken.  But God's goodness is not dependent on our doubt & confusion. He is good because He is God. And His divine detours are a call to action on our part.

Jesus said himself that God is always at work. God is great at taking a situation & flipping it upside down to give you a new perspective. Greater good comes out of our circumstances that don't seem to be good at first, if we allow it.

It is.

👊🏼You made it to the weekend & the end of Week One!👊🏼

If you are still hanging with me in Beautifully Broken, we are wrapping up a week full of expressed emotions. Pain, suffering, despair, anxiety, depression, hopelessness. Job exemplified them all. Like Job, we want to make sense of senselessness. God created us with wisdom & intelligence. We want to understand why things are. Yet Job's suffering is a poignant reminder that we will face trials & never know the reasons or the why's. Job never gets the answers he seeks & because of that, he gets the answer he needs.

Do we need to know the why's in order to have confidence that God is trustworthy? After reading through Job that answer should be confidently clear. We can question & we can get angry. But God is still God & we are not. 🖤

✴️167 attempts to get a decent picture in our matchy PJ's this year & this is the best one we got. Liam laughed & I laughed & we think matchy PJ's are still fun, just maybe not picture worthy.😂

LIES

Week One Day Five of Beautifully Broken.

What are the lies we've told ourselves & how can we bring them into clearer focus this week? Here's just a few:

God is unfair.

God doesn't really care.

Bad things happen for no reason.

Suffering is meaningless.

We are denied justice.

It's sinful to get angry with God.

God can, but I don't believe he will.

All of these complaints come directly from Job. Job never denies God's existence & sovereignty. Job just wants to understand & all of his questions are logical because Job can't see the whole picture. The same can be said for David. Psalm 13 has David questioning where God is, why God is absent from him, while he wrestles with his thoughts & sorrow.

We know that some circumstances will never make sense this side of Heaven. We won't get the answers we seek. But what if not getting an answer is what we need? What if the non-sense is a redirection? What if it's the way you needed all along to be able to look back & see God's guiding staff on the path?

Job railed at God wanting an explanation. How could such horrible things happen to a godly man? How could God let it all happen? Those were Job's heartfelt, anguished pleas. Job was angry. And God answered Job with His own bevy of questions. And Job receives what he didn't even know he needed, a renewed focus toward the glory of one day being with Yahweh himself.

When we face uncertainty, confusion, & pain, our anger should drive us to seek God's counsel in order to know Him better. God already knows our feelings anyway.

Comparison

Working through Week One of Beautifully Broken we are still talking Job on Insta and Facebook. Here's what I wrote:

"Comparison is the thief of joy." Think that's from the bible?  I sure did. 😂 It's quoted so often I thought for sure it was in Proverbs. It's actually a quote from  President Roosevelt.

Job compares. He's lived a right good life. And for what? Except for the wife, everything is gone. Evil people have it better than he does.

Is comparison ever a good thing? Comparing robs you of joy, right? In worldly terms, sure. Stop measuring yourself to others. Avoid the discrepancies. Don't pick apart differences. Stop assuming.

But God designed us with the ability to evaluate & correlate for a reason. It's how we learn what is good & bad. Holy versus unholy. Justice versus injustice.

Have you ever compared your child's needs to anothers? It's pretty hard not to. You can set goals, see room for progress, & see potential outcomes. It can be a perfectly positive thing! But when we compare, thanking God that our child isn't as bad off as someone else's, we diminish our own child's spirit & the unique person God created them to be. Then we are improperly comparing.

I'm guilty of that. When Liam was little I met so many children with so many challenges & I'd thank God Liam didn't have those. But then as Liam got older, the day came when I felt I was the litmus test for others, who would look at us & be thankful their kids & life weren't as bad off as ours. We get stares everywhere we go. I could just see what people where thinking & I have even had some rude comments. But then I was reminded, ever so gently by our good Father, that Liam is exactly who he is supposed to be & comparing him or our life to others is completely, utterly, selfish. Liam has been wonderfully made. He is unique. Created in God's own image. People's stares & comments are not a reflection of Liam. They are a reflection of their own false comparisons.

Servanthood

On this Good Friday we commemorate the ultimate example of service as Jesus willingly laid down his life for his family, his friends, complete strangers, future generations, and in total obedience to the Father.

This world is not our home and this life is not our own. As Christians, we are called to serve. You can not seperate service from Christianity anymore than you could seperate Jesus from God. They go hand in hand.

Being a servant means we give up our rights for others. For most of us that means we give up our wants for our children's special needs. We give up our dreams for our children's unique purpose.

Being a servant means we become less so our children can become more. We pour ourselves into our children, not to elevate them above us, but to give them every chance of health and happiness possible.

Being a servant means being obedient to God's calling for our life no matter what the cost. Jesus took his obedience to the cross, the cruelest and lowest form of execution anyone could stoop to perform. Genuine servanthood means we will be called to difficult days, where we are asked to do humble and hard things, but we do them no matter what the cost is.

Being a servant means we will one day be rewarded. While Jesus walked the earth he was 100% man, casting aside 100% of his diety in order to serve man and teach us how to live. The Father has given him the name at which every knee will eventually bow. We are not guaranteed our rewards here in this earthly life.

Being a servant is a matter of the heart. Our everyday service to our children with special needs is not a big heroic act that gets media attention and accolades heaped upon us. It is the small, uneventful, and continual showing up in the day to day lives of our kids that reveals the true servant attitude of our heart.

On this Good friday, we celebrate what service really looks like and are reminded of why we serve. The example has been set and our calling is clear. It is up to us to determine if we want to be called slaves to Christ.

Published with Permission

I'm a pretty open book. I don't think we learn from each other by keeping ourselves afraid of vulnerability. God allows us experiences that we don't think are fruitful but they allow us to help others, which means the experiences, while not to our liking, actually have purpose beyond us and aren't always about us.

Which leads me to a family update! Bear with me, this is long but so important.

We have always called Aidan quirky. As a child she was outgoing and would make friends with children years ahead of her. She could boss them around and they'd love it. I'll never forget when she was 9 and we were at the park where she was carrying on a conversation with some older kids. When they found out she was only 9 they couldn't believe it. When I asked them why they thought she was much older they said it was because she could argue so well. Quirky. We never had any issues with her in her youth. Ever. She was a model child.

As Aidan eased into her late tween years we noticed a marked shift in her personality. Arguments became black or white, no grey area. She became literal. She lost all patience with her siblings and pushed them away by her attitude. Her response to what we saw as significant behavior issues was not typical. She became socially awkward. And anxiety started to set in. She would fixate on future events (years in advance) and panic about it. As parents, we struggled along with her because we saw a dramatic shift in her personality. We could not understand where the behavior, the anxiety, the arguments, the strange thought patterns, were coming from. Was it stress from being the third sibling with a severely disabled younger bother who took all our time? Was it the loss of two beloved siblings playing itself out in behavior issues as a teen? Was it something at school? We loved her very much but she was pushing everyone away and made it hard to like her. Still, we struggled to parent her appropriately.

It was an afternoon like any other when I was driving home with Aidan and Liam. I decided to play a little joke on Aidan and it backfired terribly. She didn't realize I was joking. I didn't understand her inability to realize I was joking. It started an argument and ended with her in a full blown panic attack as we walked in the door. She was hysterical, breathing shallow, sobbing, and incoherent. I couldn't talk to her because she couldn't even hear me. I felt like she needed a slap back to reality, like what you'd see in a movie, but I couldn't do that to my girl, so I turned around and had to walk away from her. It was at that moment I finally realized she needed help. We took her to a child psychologist who diagnosed her with anxiety. We started her on Prozac and she started working through her intrusive thoughts and anxiety. She started to calm down and was getting better.

But Aidan thought something else was wrong with her. She didn't feel normal. She didn't think she thought like other people. She didn't feel like other people feel and she didn't react to things the way other people did. So she started to research and try to self diagnose what was wrong with her brain. She started pouring through articles, DSM's, commentaries, and journals trying to figure out what was wrong with her.

All the time this is going on, I am meeting every two weeks with special needs moms, all of whom have a child on the spectrum. They would say things their kids did and I'd say, "Aidan does that!" I'd tell them things Aidan did and they'd say their kids did that too. I even went so far as to say, "If there is a line you cross that says, 'Now you have autism.', Aidan is smacking her head on the line." I really said that. Over and over.

Also at the same time, our oldest daughter was taking a class on autism. She called me up and tried to gently ask me if I had ever considered that Aidan could have autism. I said yes, I'd considered it, but anxiety is co-morbid with autism so Aidan is going to have traits with kids with autism because of the anxiety alone. So, no, I didn't feel she had autism. Just severe anxiety. She was too typical all her growing years. It was all the anxiety that had started in her teens that was the problem.

And Aidan is still researching. Still trying to figure her brain out and why she feels so different from everyone. She would bring up a diagnosis and I'd say no you don't have that. And then she finally lands on Asperger's.   I ask her if she wants to see a psychologist to see what they think and she does. So I meet with him first. We take home packets of information to fill out on Aidan. Aidan has her own packet. And then we fill out a packet together. I can already see where it's going by the questions and the responses. Aidan meets with the Dr alone and that appointment along with the stacks of filled out papers help him make a determination. I meet with him alone, again, and he tells me she has Asperger's. Or what it is now known as Autism Spectrum Disorder level 1. But the Dr prefers to use the term Asperger's. It came as a shock. And then it didn't really shock me either. I wondered how I'd missed it when I had jokingly said for so many years that she was smacking the line. I wonder how I missed it when I was meeting with autism parents for years and saw some quirky traits in Aidan but also didn't see them either.

I wonder a lot at how much different Aidan's early teen years could have been if we had known what she was going through. If we had gotten her the help she needed before pushing her siblings away and pushing us away. If we could have understood that she wasn't being stubborn, irritable, and miserable on purpose. How might it have been if we'd been able to work with her instead of against her in her struggles?

I still think back to her childhood and how there was not one single sign of her being on the spectrum. She excelled at school. She excelled with friends. She was naturally bubbly and outgoing and personable and never got into any trouble. She never had any issues that threw up a red flag for us. And her Dr said that is actually very typical for girls who are just barely across the Asperger's line. They hide their issues so very, very well. Some will go their entire lives not knowing they are on the spectrum. They aren't the typical issues that people see and think of when they hear autism and so it's easily dismissed as quirky. It's not noticeable unless you know what to look for.

This is the first time we've talked openly about Aidan having ASD1. We are so immensely proud of her and what she has accomplished. She is in college full time and doing well. She has her brother's old job working at a gym and is getting her license this month. And my goodness, this girl travels to Belarus every year by herself, to run camp for special needs families! Most importantly she has learned all about herself through this diagnosis and how to manage herself in situations. And she is helping us learn right along side her. 

Make-A-Dream-Come-True

That is what Make-A-Wish should really be called, Make-A-Dream-Come-True, because they take a wish and turn it into your dream come true.

I was told years ago by a friend close to the Make-A-Wish organization that Liam qualified for a wish to be granted. I felt icky about applying because my experience with it was always for terminal children and I felt like I would be taking advantage of the organization. Years passed and I learned more about their foundation. I learned that they grant wishes for progressive, terminal,  and  life threatening conditions and due to Liam's difficult form of CP, he qualified under the life threatening umbrella. When you apply, you give them your child's doctor and permission for them to speak with them so they get the medical professionals diagnosis and not just your word.

Listen, no one wants to qualify for Make-A-Wish. There is something wrong with one of your most precious children in order to qualify and then, even when you qualify, it comes like a sucker punch to the stomach. It's sobering. While I was so happy to be able to give Liam a wish....it sucked to know his life is considered threatened enough to qualify.

After getting approval you get to help your child make a wish! I knew we would want to take Liam to Disney World, to let him see Mickey, to let him experience the magic, to have a real vacation where he could have fun and be a kid in a way that just doesn't happen anywhere else. We have never really had a vacation since Liam was born so a trip to Disney was what we asked for, we wanted this trip to make him feel special.

Make-A-Wish covers every detail for the trip. Liam cannot and will not fly so getting there had to be by vehicle so they provided a van for him to get there. Upon your arrival to Give Kids the World, a resort for only wish granted families, you are greeted with a cheery smile, the keys to your own villa, and a once in a lifetime opportunity....to feel normal.

I was very nervous on how Liam would do being out of his comfort zone. Liam is a stress vomiter. If he doesn't like a situation, he lets us know by trying to throw up. We can usually keep him from completing his goal but sometimes if he is really stressed he will make it happen no matter how hard we try to prevent it.  And taking him to a park with so many new experiences I knew would trigger his stress, however, I completely underestimated my wee guy. He LOVED it! He loved all the people, all the new experiences, and he even loved many of the rides. He loved zooming through the parks and being constantly on the go. He got to participate in so many fun things, just like a typical kid. He got to see shows, meet the characters, and get the VIP treatment everywhere he went! Now, he did attempt to throw up multiple times but we were able to get him calm as we talked through what he could expect to happen (Pirates of the Caribbean, Haunted Mansion, carousels, Dumbo, etc). The only "ride" Liam went on thta he didn't immediately start to panic at was The Hogwarts Express. We rode that four times in one day because he really loved it! Everything else took some convincing but then he calmed right down.

We had such an amazing time as a family getting to hang out all together and not be limited by Liam's disabilities. And one of the coolest aspects of the trip is the resort. They take care of everything. You do not have to worry about one thing. They have a full breakfast, activities through out the day and night, and even if you spend a full day at the parks, when you come home they deliver dinner to your door! They have miniature golf, a carousel, pool, train, games, a castle, and all of it is accessible. It's a special needs family dream come true.

This trip was also very special for our family because it signified a big change. Our oldest son, Ian, was shipping off to boot camp two days after coming home. The trip allowed us to enjoy each others company and not sit around dreading the day he had to leave. God's timing is always perfect as we were supposed to go in October and it didn't work out. We had such an amazing vacation getting to make magical memories that were definitely a once in a lifetime opportunity. We were blessed for sure.

Merry Christmas 2017

As usual this past year brought a few changes for our family with this next year scheduled to bring even more. In the spring Liam had another surgery to remove the metal hardware left on his legs following the double hip surgery he'd had the year before. I would not call the original surgery a complete success due to a new problem Liam now has but I am thankful the plates have been removed and he won't be getting surgery with that doctor again, if I can help it!

 Over the summer Aidan traveled back to Belarus, alone, to help run camp for children and adults with special needs. She enjoys the friendships she has made with the teens over there and stays in touch with them throughout the year. I can usually find her in her room skyping and speaking Russian frequently with her friends. Aidan has always wanted to stay in Belarus for much longer than our mission trips entail and it looks like this summer she will be able to spend many weeks there working along side the local pastor and teaching ESL to the church. This coming summer will be the 5th consecutive year one of us has traveled to the border of Russia and will be my third time to go (Aidan's fourth!). It seems the baton of leading has been passed to me and I'm excited to travel back and share the love of Jesus with our special needs community.

Aidan, 16, started school this past semester at the community college and when she graduates high school she will have her two year college degree at the same time. She still isn't sure exactly what she wants to do but she is enjoying her college classes and reveling in not having mom teach her anymore. :)

After two years at college Ian, 19, decided the Coast Guard would be a really great fit for him and his future career. He's excited to be heading off to boot camp January 23rd with his best friend Josh. They've been friends since they were eight and to see them head off together is such an awesome thing. We are praying they get to finish boot camp together too! I have to get pics of those boys together in uniform!

Rylie, 22, finished her last semester of seated classes in college and will be interning at the police department in her town. She is very excited to start working there and is looking at a possible career with them after her internship. She really loves the involvement within the community that the department has and it would be a natural fit for her. She has also looked at the Capitol Police in DC as well and we will see what direction God decides to take her. Either way, she's excited to be starting a job in her career field.

 After being told for years that we should apply for a Make-A-Wish for Liam, 10, and continually thinking he would not qualify, we finally took the plunge and applied. And Liam was accepted. It's such a bizarre feeling. On one hand you are excited to be able to grant a wish to your child that you never would be able to do on your own. And yet, realizing your child is sick enough, fragile enough, or terminal in order to be offered a wish is distinctly sobering. Yes, my son is fragile enough that he qualifies for a wish. It's a slap in the face for sure. But at the same time, we are excited to be able to take Liam somewhere and do something with him we would never do with out the benefit of the wish granters at the Make-A-Wish Foundation. Liam and his entire family will be going to Disney World, Universal, and Sea World for a week in January, the week before Ian leaves for boot camp! It will be a bittersweet trip for sure knowing things will change once we get back home. But we are so so grateful to have this opportunity as a family!

Shawn continues to travel frequently for work, criss-crossing back and forth over the US each year. This year he took the title Aidan and I had possessed for five years now- the family member who has traveled the farthest across the globe- when he went to Bahrain! He said it was an experience for sure and he doesn't need to go back. But he sure is proud to hold the title of the farthest traveled McIntosh!

I set out to finish in 2017 what God led me to start in 2012. Something that became near and dear to my heart. When Liam came along and it was clear he didn't fit any mold I had ever seen, I craved a study that would walk me through my experiences and how my new broken journey was going to look long term. Where did I fit in? Where did Liam fit in? And what does God think about all the disabilities we see? What does it mean to be made in the image of God? And where is God's providence in it all? I couldn't really find anything that answered all my questions in one book that took me deep enough for the knowledge I craved. So I started writing 5 years ago. I never finished it. I picked it up again in January and by May I had contacted a publisher to see if they'd be interested in it. A division of Zondervan, WestBow Press helped me put this study for special needs parents/families/caregivers/supporters together and Beautifully Broken was born and listed on Amazon! My prayer is that whomever reads it finds encouragement no matter where God takes them on their own journey because we are all broken, all in need of hope, and yet fearfully and wonderfully made.

This next year, I hope you will continue to seek God, see God, and enjoy the beautiful journey He has taken you on. He gives us the beautiful gift of Himself and I hope that this Christmas season you are able to take time to enjoy the greatest
gift of all. Merry Christmas 2017!

Admiration

I've been thinking a lot on admiration lately simply because of something a friend said. They have adopted a special needs kiddo who is blind. She mentioned people admiring them for it and asks that people not do that....because they didn't do anything special.

The crux of the issue is her heart. This beautiful couple doesn't think they did anything special. And yet they did. The fact that they view the adoption, knowing they now have a child that faces life long challenges, as nothing worth admiring, is beautifully and profoundly logical. They want everyone to know that if they can do it, you can do it. They don't want people putting them on a pedestal, in awe of the choice they made, because they want you to know you are just like them. They want you to realize they aren't special and because they aren't, you don't need to be special to adopt either.

There is 100% truth in that.

You don't need to be special to adopt. You just need to follow God's call on your life...showing up and saying yes even when it doesn't make sense because He WILL equip you. Some people don't think they are called, don't want to be called, or ignore the call because they think they aren't something special.

God works all the time with naysayers, skeptics, and the least expected. He delights in showing off when we simply show up. We don't have to have it all together in order to be used by God. I know I'd never be ready if God waited on me to have everything perfect before proceeding. I'd never get anywhere.

What makes my friend so "special"? She simply said yes and continues to do so. She said yes to hope. She said yes to risk. She said yes to challenges. She said yes to commitment. She said yes to the unknowns because she knows Who knows our unknown. How many of us are willing to do that?

Neuro Check Up 7 Years Later

No, that title isn't a typo. I really did wait 7 years between neuro appointments. The last time we went it was a joke (Dr said stem cells aren't helpful,  it was a shame Liam is blind, said if he had ataxia CP it was the worst he's ever seen, blah blah- I mean he was older than America so I just uh huhed him at every turn) and other than giving us a new med to try it wasn't a helpful or productive appointment. After finding out the medicine had some pretty serious side effects I never even put Liam on it.

Fast forward to this summer. Liam's weird jaw issue has not abated in the least. Some days he's great and other days it's a non stop battle of forcing his jaw shut against him cocking it open and gasping for air. So, we decided to see a new neuro and prayed there was something that could help Liam because baclofen isn't cutting it. Maybe he needs a higher dose? I dunno but that's a different Dr, so off to Chapel Hill we went.

Three hours of driving, with two of them spent listening to Liam cry, we arrived. I hate that drive. Anyway, got called back pretty quickly and to my utter horror, the exact same neuro walked in the door from 7 years ago. Now he's older than dirt. My jaw dropped open the moment I saw him and I turned to my mom so he wouldn't see me gaping at my horrible luck.

He grinned and said hi and asked me how the medicine worked all those years ago. I told him I wouldn't know because we never used it and honestly, if we had, I've had too many sleepless nights since then to remember if this particular one worked well or not. He did spend a lot of time learning about Liam and how he is doing in school and with his eye gaze and spent a lot of time playing with Liam's sweaty hands. He asked if we knew what kind of cerebral palsy Liam has and I told him he told me years go that he felt Liam has choreoathetoid CP. Or it could be a really bad worst case scenario ataxia. He was playing with Liam's hands at the time and said his lovely loose hands and free movements of them showed to him that Liam has choreoathetoid. I asked him how many kids he's seen like that and he said 4-5. It's not very common and it's stupid hard to treat. Stupid hard.

He mentioned the medicine again, levodopa, which is a Parkinson's med, and felt it was worth a try. He said Liam has damage to his basal ganglia (that has never been shown in his MRI) and that that has caused Liam's rare form of CP. He said some kids with different disorders that affect the basal ganglia learn to walk after going on this med (that will never happen for Liam) and it could really help with his extra movements. He also mentioned a patch to help for the days Liam likes to push all his saliva out of his mouth instead of swallowing it. Love those days.

I decided to give them a try and he went out to get the rx. Ten minutes later he still wasn't back. I go out in the hall to find him and one of the nurses asked me what I need. I tell her I'm looking for the Dr and another nurse said she heard him in his office dictating notes. I cried WHAT a little loudly and the ladies started laughing. I told them I hadn't been back in 7 years because I was hoping that Dr had retired. They laughed even harder and said they have heard that before and others were wishing for the same thing. One of them went to track him down and another 5 minutes later he came back with the rx. As he walked in the door he told my mom she had come with me the last time (good memory) and then asks me if I want a business card. I said sure and then he hands one to my mom saying she could have one too since she came with me, like he was handing out lollipops for good patients. He left and we walked out the door laughing.

I couldn't be angry. Frustrated yes, but not angry. I should have checked to see if it was the same Dr seeing Liam, so that is all on me. I had assumed he's retired. I'm not kidding he's OLD. I was hoping for young fresh eyes on Liam but maybe that will happen next time. I did feel the appointment was useful as we had two new meds to try. He said we would know right away if the levodopa would help and I'll leave that for another post. ;)

You blog?

Recent conversation:

Friend-You have a blog? 

Me-Yeah, I actually do. 

Friend-What's it about?

Me- Well, nothing lately. 😜

There is so much to write about lately and I just never put my thoughts to the blog. 

I'll start to ease my way back in because there was just too much drama this summer to put in one post. I'll start by saying we put Liam on cannabis oil and its the best thing we did. 

His recovery from his double osteotomies this year was long and painful. He didn't move his legs for months after the surgery and for many months more he barely moved them. When he finally started to pull his legs up while on the floor, he would get them stuck and then cry because he couldn't put them down. 

And then there was the sleep. He would wake up miserable many times a night. It's times like that I'm thankful he's in my room because I can roll out of bed and be right there to reposition him. 

I'll explain in another post how I got into cbd (cannabis) oil but it has been a game changer for Liam. He's been on it now for 4 months and we've seen a lot of benefits so far. He's sleeping, his pain from his hips is gone, and that leg thing where he would get stuck in position? Gone. 💚

Summer was challenging this year. I'll save those moments for some later posts if I ever get back here. Needless to say, I'm happy to welcome fall. And hopefully less drama. 

Opinionated

I imagine we are all opinionated. Liam's no different. He isn't able to freely verbalize his strong opinions as we are wont to do, nor can he tell us he disagrees with our leanings. But give him the chance to express his feelings on a school subject and he can tell you he doesn't want to participate.

R: Liam it's time to write your sentences. Do you want to write about flowers?
Liam: No
R: Do you want to write about birds?
Liam: No
R; Do you want to write about bees?
Liam: No

The teacher hears this exchange and says, "Do not give him a choice on writing his sentences! He's a boy, of course he isn't going to want to do it. You have to make him do them."

Add caption

R is always the sweet softie. "OK Liam. You have to do all the sentences."

R: Flowers _________?
 Liam: Grow

R: Birds___________?
 Liam: Fly

R: Bees ___________?
 Liam: Buzz

Show off.

No more hardware!

Last year some shocking details were left out in advance of a procedure Liam went through. At the surgical consult, surgery, and subsequent 5 day hospital stay, no one ever thought to mention some pretty significant details, not even the doctors. I discovered the particulars on my own at one of the follow up appointments when they hung his x-rays up on the wall. They didn't look right and I snapped a quick picture with my phone as the doctor hurried out of the room. The Chapel Hill orthopedics department was packed full that day and we were lucky to get a room to get Liam's casts off. They were afraid they'd have to do them in the hall and with everyone rushing everywhere the doctor gave us just a few minutes of his time with broad grins about how great Liam was looking and that he was healing well. But to me, the x-ray look awful.

As soon as we got to the car I started looking at the picture. I couldn't wrap my brain around what I was seeing and Liam's newly uncasted legs were giving him fits so I had to care for him all the way home. Once we got home I started to dig a bit further into the weird picture and the obvious metal plates shining back at me that I had never before seen nor even knew existed.


It's quite shocking to be looking at your child's 4 week post op x-rays and come to the horrifying realization that they cut his thighs in half and braced them back together with titanium brackets and you had no idea it had been done. I was just sick to my stomach. I was physically ill all weekend. I messaged friends in the field trying to figure out what had happened.

Liam had been in a lot of pain during recovery and we assumed it was just a lot of discomfort from the tendon lengthening and the heavy casts with his legs spread 16" apart along with the hip correction. Apparently, there was a whole lot more to his surgery than the doctor initially let on.

I called the doctor bright and early Monday and shared my feelings about our big surprise. He was just as taken aback by my reaction as I was by his insistence that he had told me all about cutting the femurs in the pre-op consult. I firmly told him he was mistaken and reiterated a significant detail he told me at the consult. He said that he won't do this surgery on all the kids who come in needing it if they don't have a good home life, won't receive the proper post-op care, and won't get adequate therapy and follow up over the years to come. He told me he would do the surgery on Liam because he knew he was well taken care of and it would improve his quality of life and then he told me all about how they might have to use cadaver bone, would have to put a bolt in his hip, would try to save the socket, etc... I was able to recall almost the entire conversation with him.

Bulge on the outside of his hip from the hardware.

When I reminded him of our talk he halfheartedly admitted that he probably didn't fully explain the entire surgery. When he told me they would cut Liam's femurs, we had been talking about the ball and socket where his left hip was coming out.

He never stated he was going to cut both of his femurs mid thigh, realign them, and brace them. If he had, I never, ever, would have consented to having his right leg done. There was nothing severely wrong with that leg. The right leg didn't have an issue that needed such significant surgical correction. I would never have allowed both of his legs to essential be broken and casted at the same time, when the one wasn't even an issue.

We were in the middle of the school year when we scheduled the surgery, having been told Liam would only need a week to recover. I would have known Liam needed more time to recover than a week and wouldn't have scheduled it when we did if I'd known everything involved. He ended up missing an entire month of school, because who wants to go to school with two broken legs in casts that are separated with a bar? And all along we just thought he was just miserably uncomfortable, not recovering from two broken legs.

Another angle of the bulging hardware. Looks comfy, no?

When he admitted to not telling me all of the details, he stated that maybe the parents who are fully invested in their kids should see an x-ray of what their child's legs would look like after surgery so they know what to expect. I told him that was an excellent idea as I didn't get a say so before hand on what was coming. When I told him I never would have consented to the surgery on the right leg he tried to tell me that it would have had to eventually be done anyway, "because you see that happen all the time in these kids". Which frustrated me all the more because, as the parent, I get the final say so in how my son is medically treated. I should have been given the option to say no. I should have been told so I could have lessened Liam's suffering and prevented an unnecessary procedure from happening. It was not the doctor's decision to make in this instance. It was entirely mine.

Recovery from hardware removal.

Over the past year Liam has lost a lot of rotation and flexibility in his hips, had a significant increase in clonus of both legs (muscle spasms), he gets cold very quickly, and he no longer would lay on his side due to the protrusion of the plates. They were very hard and uncomfortable.

After a full year, if proper bone growth has taken place, you can opt to have the hardware removed. Which is exactly what we did. I couldn't wait to get those stupid plates out of his body and scheduled to have it done right at the one year mark. It couldn't come fast enough.

The curved top is what was sticking out from his upper thigh above.

We are only a week post op and I can tell he feels better already. Once all the swelling goes down, the pain subsides, and his incisions fully heal, I think we will have a much happier little boy.

He already has more movement back in his legs and I'm looking forward to the day when he can cuddle with me again. We haven't been able to do that in over a year.

I am always learning on this journey we are on. I thought I had asked all the right questions, I thought I knew exactly what was taking place during the surgery, and I thought I was well informed of the recovery. I wasn't. I can't beat myself up over it when he admitted to not telling me all the details, but it just goes to show that you can think you know what you are getting into when you suddenly find yourself thrown from your high horse into the ditch, trying to pick yourself back up, and wondering what the heck just happened.  So, we saddle right back on up, and keep on keeping on. :)

Unexplained

For a kiddo who only sees his pediatrician at his well checkup, seeing her 3 times in February was unprecedented. When Liam's fourth time running a fever hit I took him in right away. I was scared with his immune system still recovering from all the antibiotics he was on, he was potentially now getting sick with the flu.

Nope. No flu. Thank God! But no answers either. I did ask her to do a blood panel so we could check for any hidden sinister signs of trouble. It looked great! Whew!

I asked about all the 2 am questions that came to my panicked mind when I was trying to comfort Liam. Do you think it's his metal plates on his femurs causing rejection? UTI? Kidney infection? Recurring fever syndrome? Something more sinister? She doesn't believe any of those are reasons for his fevers and actually felt it was due to his constipation. Which he's had since his first round of antibiotics. Which is contrary to what a typical person gets while on antibiotics. Leave it to Liam for his body to respond opposite of what normally happens.

She said you see it a lot in the elderly but that brain injured kids can suffer from it too. That was news to me. We have suffered from some pretty difficult bouts of constipation and never experienced fevers before. But if that's what is causing it, I'll take it. It's an easy enough fix. 

We have had a variety of problems this month messing with his health and if we can get him working right again and there are no more fevers we are good to go. If we still have fevers and no constipation, then we will start digging deeper to the problem. But it's one of those issues where the Dr doesn't really know where to start so you just pick somewhere and go with it.

We helped him out yesterday and I am pushing lots of water. And Liam still woke up screaming at 2:30, completely inconsolable.

I'm telling you, the worst mom feeling ever is not knowing what is going on with your child. Throw in special needs and being non verbal and you feel utterly useless. Sitting by watching your kid scream in pain and frustration with no ability to alleviate their problem is the most humbling of experiences.

February Was Full of Fun

This month has certainly been challenging. Special needs parents face a whole other situation when our littles get sick. Compound that with being non verbal and you've got a fun experiment in trying to be a doctor with no idea where the patient is hurting.

Liam got a cold early in February that didn't want to let go. When the fever started and was still going strong 5 days later I finally braved the sick waiting room at the pediatrician to see what was going on. His ears, chest, and nose were clear and with the low grade fever he was diagnosed with sinusitis. With amoxicillin on board he started feeling better. But a week later the fever returned. Took him back in and the diagnosis was sinusitis again. This time they put him on augmentin. Several days into the augmentin the fever disappeared but the vomiting started. Cue traumatic flashbacks of the days when Liam threw up 5 times a day.

We are pretty darn good at trying to catch what Liam's spews which thank God are few and far between these days. But the ones in the middle of the night, those get nasty messy. Last night we went through 3 bed changes, 3 changes of clothes, draining his stomach so we wouldn't be woken up by hurling again, with a subsequent permanent wake up call at 4 am. 😱

We are thinking the augmentin was making him feel miserable along with the uncommon side effect of completely slowing down his bowels probably made him so miserable and uncomfortable for so many days.

We tried school today for the first time since last week in an attempt to show him he could do it and to get his energy and excitement back up. He last most of the day before he just couldn't go on. When the other kids went to recess they asked if he wanted to go. He said no. Then they asked him if he wanted to play on his eye gaze. He said no. They they asked him if he wanted to go home. He said yes. Poor guy was exhausted.

See how red his face his? Poor wee man kept it together as long as he could. 💗

Communication Update #1

So many changes for Liam this year in his communication. Exactly one year ago Liam got his first augmentative communication device. He got the Tobii Dynavoxx and uses his eyes to scan and make choices. We have wished for this for him for so long and it was definitely a gift to finally get it in hand.

Liam's speech therapist has been awesome. She gets frustrated with kids like Liam because she wishes she had been involved in their therapies before now. She wishes he had gotten the eye gaze years ago. Studies show that the earlier they get the device they better they do. Duh. 

I attempted years ago to get an eye gaze for Liam. We spent an hour with a rep talking about the devices available and attempted to get Liam to use it. The appointment ended with us being told Liam needed to know more verbs before using the device. Dumb. So dumb. How can you even carry on a conversation with out using verbs? I was frustrated.That speech therapist quit that week and we went with out until we finally got the one we have now. Did I tell you she's awesome? 

She has been so supportive. She saw right away that we could train Liam to use one. For Liam it isn't just about teaching him to use the device to communicate it is also training his eye muscles. His cerebral palsy affects his eyes. It can make them tire out quicker and the weak muscles have a harder time staying focused. 

The eye gaze has a lot of activities that Liam can utilize such as games, books, etc. and we can create pages as we go. He does a great job of telling his therapist Hi and Bye appropriately. :) She also sees when he chooses not to participate and he gets in trouble. I think that's a great thing! 

 We've also implemented using a PODD for quicker home access and communication. I'll explain more on that in another post but using two forms of communication, obviously along with speaking to him, are really helping his communication emerge. I'm amazed at some of the things he says while at school and love hearing how supportive his teacher and one to one are with trying to reach my wee man.

What is the deal

So google changed my ability to keep my blog name. I have to pay to have a google account just to pay to keep my website name. So, in the process of the craziness this school year I haven't actively pursued getting it done. So now, here I am, trying to figure out what to do and how to do it, meanwhile my old address at j-ustm-e.com shows as invalid. I have so many updates I need to make so if you are still here, please bear with me. 🙏🏻

Surgery #7- Hips and legs

Tuesday Liam went into UNC Children's Hospital for a realignment. He had a femoral and pelvic osteotomy, tendon lengthening in both legs, and a hamstring lengthening in one leg. The surgery took right wround four hours but from the time they took him back until we saw him was almost 7 hours. He was preetty much completely out of it during the first day and adapted well to coming out of the surgery.

We knew what to expect when we saw him but it was still quite a shock to see his legs casted so far apart. We were told he would have a 12" bar between his legs but it's ove 14" wide itself along with the deoth of the casts so his legs are really 16" apart.

The Dr was happy we went ahead and did the procedure now beccause his left hip was almost out of socket. That shift wore down the side of his hip and reshaped his femur. The Dr shaved down and reformed his left femur and using the piece he shaved off, they bolted it to his hip lengthening the hip back to a normal shape. He didn't need to use cadaver bone so that was good. Liam's right hip needed minimal reshaping but hewanted to do it while they had him under. They then cuts his tendons to lenghten them, these are what pulled his hip so far out of alignment and then he cut into his hamstrings to lengthen these as well due to the new length of his legs. 

Liam's blood clotting factor was low and in order to remove his epidural they needed it in normal limits. In order to do that he got a transfusion of plasma today. Once that was in they took the epidural out. All pain management is now done through oral meds. We are trying to get them at a level that keeps him as pain free as possible but so far today that has been very difficult. If he wakes he cries in pain so he tries to stay asleep.

It has been pretty rough today. Not only does he have discomfort from the surgery he has his legs weighted down with casts and he is currently stuck in pretty much the same position all day long. The swelling on his thighs and the bruising have diminished some and we have lidocain patches on them to try and help just that little bit more. 

I am hoping tomorrow he is a bit better and the pain is more manageable. I miss his silly smiles. We were supposed to be discharged tomorrow but with hiis level of pain we will be here at least one more day.

P.S. UNC has been awesome to us. Every single person we have met has been attentive and helpful with Liam. We have had a team of people in and out of his room every day checking on us and caring for him. Liam's had a pain management team, the surgeon, resident surgeon, nurses, OT, PT, a teacher, case manager, anesthesiologist,  etc... And I have nothing but great things to say about all of them and our experience here.