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.

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.

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.

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?

Sleep study done

Liam had a sleep study recently that we are still awaiting results on. But you know your kiddo has a sleep problem when you get there for check in at 5:30 pm and he doesn't fall asleep until 4:30 am. 😳 I couldn't believe he lasted that long. He has never stayed awake that long before, 2:30 sure, but 4:30? I can't believe how well he can get by with so little sleep. I did feel very blessed in that with all those wires on his body and head, he was a happy guy the whole time. He didn't fuss one bit. And with everything he had on him I was surprised he did so well. We have to see his ENT in Chapel Hill next month to get the results, but I did walk away thinking that it was probably a good idea we went ahead with the study. Because they wired up everything, his chin and jaw were a part of the data and while we were there he did his weird jaw thing. So I am hoping that will be able to give the ENT some solid info on what he is doing so she can figure out how to help him with it. Now our next step is crossing off pulmonology.

Shriner's Visit I

Liam had an appointment with the Shriner's Hospital for Children down in Greenville, SC this week. The appointment was actually set up by our pediatrician who when seeing Liam for a yearly check up was disturbed by the scissoring he was doing and felt that it was to the point where it needed to be fully checked out. I asked if we could just go to Duke since Greenville is 6 hours away but she really wanted us to go down there for a consult. Liam did great for the drive because he laid in the back seat reclining on pillows the whole time.  Now before you get upset with me for not having him properly seated and buckled, let me tell you- He HATES his car seat. It does NOT provide proper positioning for long periods of time and he can't stand it. It would be different if we had a wheelchair accessible van because he would be able to be in his wheelchair, but for now, we do what we can do and that is make Liam comfy and happy.





So, after driving all that way we literally took a 30 second x-ray and spent ten minutes with the ortho. I was hoping for a lot more interaction with some people since we really don't have any oversight for Liam in regards to nuero, ortho's, specialists in rehab, etc... but that was all we got.

The Dr told me that Liam's left hip (which is his much shorter leg) has a misshapen socket and the ball of the joint is shifted down from the center. He said it will eventually come out of the socket some time in his teen years and we can do one of two things: Nothing-which means when it comes out we will be managing pain for him for the rest of his life (depending on how bothersome it is to him) or we could do surgery to fix it and he would work on his right hip as well even though it isn't nearly as bad as the left. The surgery would be a four hour procedure and would require hip casts for 6 weeks with an expected return to Liam's "normal" in about 8-9 months following that.

He saw Liam's breathing (his goofy, stubborn, horrific habit of locking his jaw and closing his airway) and was concerned that he might not even be a candidate for the surgery because of his 'airway' issues. Because after all, 1 in 20 of  'these kids' die during the procedure. Yes. He actually said that to me. Sigh.

I know surgery has risks. Like, duh. But his airway is not an issue. He would be completely sedated and intubated for the procedure so his concerns were not my concerns. I know my boy and his behavioral oral fixations isn't one that would give me pause when thinking about proceeding with this surgery. He has a bad habit. He doesn't have an airway or breathing issue.

I told him he's never sick, never been hospitalized for sickness and I wasn't concerned.

He did mention us seeing a full team to evaluate Liam and look at him with new eyes. We have scheduled an appointment in June (the earliest they had) to see a "Tone Specialist" who is supposedly very good at what she does. It will be very interesting to have her lay eyes on Liam and have a perspective from someone who works so often with kids of such a severe nature. Liam takes no meds for his condition and that usually shocks everyone (the looks of surprise always crack me up). We've never had a good Dr on board to help us with him. He still may not need any, but it will be nice to know that and not wonder if we shouldn't be trying something else.

So for now, we at least know more information about Liam's hips and we will hope to garner even more info in June.

Not that you do.

Just in case any one erred in judgment and thought we have it all together, I would like to take a moment and say that pretty IG photos and FB posts do not a clear picture make.

While yes, my life could be worse (you can say that to anyone - of course life can always get worse), we are absolutely and always grateful for what we live each day, but sometimes days with a multiply challenged child are tough and reality bites hard.

Cue the vomit.

And Liam's new horrible habit of locking his jaw and closing his airway. Gagging. Gasping for breath. Then doing it again 597 times before the day is done.

Now picture him doing that in the middle of the night.

Cue the picture of the sweet little family all with children your own kids ages...if they had lived. Cue the happy-go-lucky faces of said children who can pose and smile on cue, reminding you that your kid can't.

Some days, life is asking you to take a punch in the gut - again. That doesn't mean I hate it. On the contrary, I love my life and the priviledge it is to be the mom. But the daily grind of a challenged kiddo can be taxing and on those days I think I am grateful for the moments where I look like I have it all together. ;) I can pretend, right?

Best $35 ever.

I happened across this really cool head rest while on facebook recently. It's original intent was for keeping kids from collapsing into a ball while sleeping in their car seat. But the momma who designed these has had special needs parents, like me, asking her to make one for them due to their little ones lack of head control.

While the headrest isn't perfect, because nothing involving Liam ever is, it has been a huge help keeping Liam positioned in his car seat. I'm usually having to reach back while I'm driving to help reposition him but when he has this support on he sits pretty well and I can focus on driving!😨

He didn't like it at first because we all know Liam doesn't like changes. And to him this was a big one. It took him a few days to get used to it.

Sherri is the momma who started making the Sleepy Time Headrest and she personally called me to talk to me about making one for Liam. She was more worried about making sure it worked for us than she was about selling her product. 

You can check them out on facebook or visit Sleepy Time Headrest to learn more. It velcros closed under the chin and with Liam being such an avid thruster,  I was concerned it wouldn't hold but it's done a great job and hasn't broken loose once. It's even been crash tested!

It's not usual to find a product for special needs kids that is this affordable!

Traveling with Liam is hard and until we can get a handicapped van, I'm thrilled to have something to keep us going with the vehicle we have. ❤

First Day of First Grade

This was the beautiful smile that greeted me this morning when I told him that today was finally the first day of school. He was so excited.

We've been counting down the days for the last week. 

He started first grade today! 

 I always have much to be grateful for but this year I am especially grateful for the ability for Liam to go to school, to get to participate in activities with kids his age, to be educated in a setting where he is well cared for and loved, to receive therapies while in school...because I know there are many children who don't get the privilege that we are so accustomed to as being a right. 

 

Have I told you I'm going to Belarus?

I always tell my kids that if they ever have anyone question them about God's existence, they need only to speak with me for a time and I could surely show them how real He is in my life. Whether they choose to follow Him or not is their choice, but God is clearly alive and working in me.

Too many stories, too many coincidences, too many unspoken answered requests for me to ever deny that my savior lives and is actively involved in my life.

Here's a perfect example.

Last year when my two oldest kids were heading off to their mission trip in Costa Rica, I told Shawn that I wanted to go with them the next year because they work with kids in the orphanages when they go and my heart has always desired to come along side orphans and work/help in some way.  We were also sending out a team at the same time to Belarus to help run a VBS for special needs kids and their families. Both teams were there that day, being prayed over before they all headed out.  Shawn asked me why wouldn't I want to go do the Belarus thing instead since I am heavily involved in the special needs area with my church and with my own son. He thought it would be a better fit. I told him that it wasn't my thing. I am already actively involved in working with special needs kids through our church, my community, and in my own family. I didn't need to travel around the world to do more of it.

Three days later, I was driving Liam to therapy, praying over my kids and their team in Costa Rica, asking God to allow the kids to see him in a new, tangible way and praying for their safety when my prayers were interrupted and I heard, "You're going to Belarus next year."

Excuse me?

Whaaaaaaaaat??

You have to understand, I had NO desire to go to Belarus. None. It hadn't ever crossed my mind and only because Shawn asked me about it had I ever even discussed it. This was not for me. It wasn't my thing. I didn't want to go.

Yet here I am in prayer over my children when a word from the Lord comes through loud and clear, completely seperate from my prayer content, and what seemed to be for me, from way out in left field. It was bizarre.

At first I wasn't sure it just wasn't my crazy brain thinking it all on it's own, but when I realized that I wasn't even praying over Belarus and the team and that I didn't even desire to go there, I knew this was absolutely a word from God. I got the chills. I didn't say anything to anyone.

Then the team got back two weeks later.

One of the members got off the plane, went home, and immediately called me. He says to me, "You're going to Belarus next year."

UH, Whaaaat?

I was floored. If he could have seen my face right then, I was just shocked.  I threw up excuses....it's too expensive, I just don't know, it's too expensive, I'd have to think about it.  And then he said, "No, really, you are going next year. God already told me." And I'm thinking, yeah, he told me that too buddy.

I didn't tell him right then what I had heard God clearly say to me in prayer. I kept it quiet until I saw his wife, and still in a stage of unbelief, I shared with her what had happened. I told her the whole story. She said that it was confirmed to me three different times over three weeks. Pretty hard to dispute that I shouldn't go.

And God has had my back every step of the way. All of the money needed to get my team over to Belarus has been paid for. He has worked out all the plans and everything is going perfectly for our team to live courageously, answering God's call, and work with special needs families and their children.

I do appreciate your prayers for us as we go. We don't go until the end of July but things are a mess in Ukraine, which is right below Belarus, so we pray for continued peace in Belarus because the town we are in will be right on the Russian border. I don't like flying that much so prayer for me as I travel without Shawn who normally keeps me sane in the plane and of course prayer for safe travels and lives touched and changed.  <3 p="">

We will be flying into Minsk and then on to the city of Orsha.

How amazing is our God? I freely admit, I had no desire to go, but God has seen fit to send me and I couldn't be anymore excited. I know this trip is for his glory and is serving a huge purpose not only in my life but in the lives of all those who will hear the story. Because I am proof that our God is a living, active father who speaks and only asks us to listen and say yes.

It shouldn't be this hard

Liam needs total support and that means without a wheelchair accessible van, he has to have a good car seat that provides proper positioning and sufficient support.

 We were approved, easily, for a special needs car seat last year. So what could be a problem?

The DME (durable medical equipment) company we work through, NuMotion, had recently merged or bought out a company that had recently bought out another company. With Numotion, efficiency would be more streamlined, the steps of the process would be posted on your account on their website after you log in so you could always see exactly where you were in the process and what next step was needed to get the equipment to your door.

It's lovely.

However, NuMotion doesn't carry the different types of special needs car seats that are available on the market today for you to try out. They can't show up at my door, have Liam try out 4 or 5 different models and then we pick which one works best for him and our truck. They may be able to get one or two but if those don't work, you are still stuck with trying to figure out if the one in the catalog is going to be the one that works best or not. Some car seats are too big for certain vehicles, some are too wide, some don't provide the proper positioning for Liam, etc.  It's all a guessing game if you don't have one in hand.

Back in 2012 we picked the Special Tomato car seat. When we tried it out Liam did seem to sit in it well, it provided proper positioning, and it fit well in our truck. Fast forward 8 months to when we actually received the car seat. Liam had had a huge growth spurt and the brand new, $1500 car seat just barely fit him. There was no way once winter hit and he was wearing thicker clothes or if he hit another growth spurt that this car seat would last the expected 2-3 years. He just fit in it.  I had his PT check it out and she was concerned as well.

After letting NuMotion know, they ordered the next size up in the Special Tomato. When we received it, our DME guy and I were shocked to see such a huge difference in sizes. This one was too big. So big, in fact, that we couldn't even get the chest strap to come within the 2 inches of Liam's neck that is required for proper safety positioning. He was even trying to position foam inserts over foam inserts to get him to sit in it right. At that point I was saying huh uh. That is not going to work. We need a different seat. The Special Tomato is not the one for Liam.

After getting approval to order a new car seat that was not Special Tomato, our DME guy was able to find a car seat that he thought might work for Liam.  He brought it out to our house, we tried Liam in it and put him in the car and it was a beautiful thing. He fit perfect. It fit like a dream.  We finally had one that would work. And for years to come too. He said he would get it ordered and it shouldn't be no time at all to get it in.

Fast forward to yesterday. My DME dude had to come to the house to fix Liam's stander. I asked when we were getting the car seat and he told me he had bad news. NuMotion won't let me get a new one. After getting over my shock and finding words to say, I asked him, "So you are telling me NuMotion said that Liam has to use a car seat that is too small for him because they don't want to get us a new one?" He said that was not what they were saying. Just that we couldn't get another one. So I said the same thing again. NuMotion won't allow a new car seat, that would provide proper positioning and safety in the event of an accident because they don't want to. NoMotion said we could get a new car seat, fitted us for one, and then said they had changed their minds and we couldn't get one. I asked for the corporate management's number.

Liam is fortunate to have a Medicaid case manager who has his back. She will fight to get Liam what he needs and she does a lot of dirty work in order to get things done. I can't say enough good things about her. It was a hassle on her end to go through the process of getting this car seat paid for in the first place and to have it not be right and NuMotion not fix it was going to have her on the phone with them immediately.

After I put in my call to my case manager I called the the corporate number and spoke with a very nice lady who took down everything I said. She said she was forwarding the information on to our regional manager and I should get a response within 24 hours. If I don't hear within 24 hours a formal complaint is auto-logged with corporate so she said I should definitely hear something today.

We started this process back in 2012.

Liam deserves a car seat that fits right, keeps him safe in the car, and provides proper positioning. It shouldn't be this hard to make that happen for him.

His normal smiley self on the way to school. Sitting in his way too small Walmart seat because it's easier than the too small Special Tomato.

     

Field trip's a trip

Remember how fun field trips were when you were in school? It was a day off from school work, we didn't have to sit in the chair all day and work at the chalkboard, and we got to do something interesting and exciting, something out of the ordinary. Normally the highlight of the week was getting picked to go outside and clean erasers, seeing how many words you could spell before the chalk dust faded away.

I still remember some of my favorite field trips though: getting to see how milk was bottled, going to the fair, seeing the local community theater, and visiting the fire station.

Liam got to go on his first field trip this week. He got to go bowling! I heard he had a fabulous time. I would have seen it first hand if I'd gotten my hiney out of the house and over there on time but I got so wrapped up in writing that my morning turned to afternoon before I even looked at the clock. I rushed to school and met them coming back in. His teachers filled me in on what I'd missed.

 

 Liam is a lefty, whether by nature or necessity we don't know, but apparently becomes a righty when it comes to sports. They said he used his right hand to roll the ball down the frame. He even bowled a strike! They were all so excited for him that they cheered and hollered. But that made him cry because he can only handle mild excitement over his achievements. Too much enthusiasm and he has a break down. Seriously, he will bawl if you cheer for him.

Not one to quit though, he soldiered on and finished up two games with a score of 96 and 112.

He even got a medal.

That's my little dude; having a field trip day to remember.

Broken Values

We were talking tonight about value and purpose in people with a disability and I was reminded again how important people with disabilities are to this world. Statistics are showing that in Europe, 92% of babies diagnosed with Down's Syndrome are aborted and by 2030 Denmark will have seen the last baby born with this condition. Can you imagine a world with out disabilities? What are we telling our children? What are we valuing as a people, as a society?  It seems to me that we are beginning to leave a legacy that says you have to be perfect to be here, that unless you are free of a disability you are not valued, not worthy, and not wanted.

But that is just not true.

People with disabilities are wanted. What society looks down on our heavenly Father adores. Those whom society mocked, Jesus touched.  He values them all. In Luke 18, Jesus' disciples rebuked the blind beggar, thinking Jesus had more important, better things to do than to speak with him. However, Jesus stopped and he healed that blind man. He took time out for the lowliest of the low and touched him. What Jesus own friends viewed with dismissal, Jesus lifted up.

Liam's buddy B

Liam's life is full of value. I'm not just saying that because I'm his mom, I'm saying that because I truly believe it. This world is a better place because he exists. Not only is his life valuable, he gives value to others. I have seen the joy he brings to others, all with out saying a word. Liam even has a best friend at school.
While Liam may not know he has a best friend, Liam has brought value to B's life because B values him as a best friend and B brings value to Liam's life because he loves on him unconditionally and with no pretenses. I would say that's a very worthwhile, valuable relationship right there. Both of them, full of worth, and very loved, even in their brokenness.

But most of all, God loves and values Liam very much. In the scriptures God is always on "Team Weak". In the OT God even displays his wrath against anyone taking advantage of widows or orphans by putting them to the sword. He takes it seriously that we should be caring for those less fortunate. In Psalm 82: 3,4 God presses us to defend the weak and fatherless, to maintain the rights of the poor and the oppressed, to rescue the weak and deliver them from the wicked. That sounds to me like a God who cares very much for people with special needs, doesn't it?

In Matthew 25: 34-46 Jesus speaks of the separation of the sheep and the goats. He spoke about giving something to drink to someone thirsty, food to those who hunger, clothes to the needy, etc... He explains that when we do that for the least among us we have done that for him.  It is supposed to be an honor to help those who can't help themselves. God is compassionate and we are to be as well. God created us in his own image, not for us to feel superior to one another or look down on those less fortunate. We are to lift them up, love them, feed and clothe them, and value them because each person has God given worth. We mimic God when we mimic Christ's service to others. And it is in the lowly, the weak, and the disabled that we see purpose beyond ourselves, purpose that brings us closer to Christ and shows us how valuable it is to have a world full of broken disabled people. I wouldn't want a world with out it.

A month of changes

God has been so good to us during this season of changes. Liam being in school was always a bad idea when we first considered it and having a team on board that thought he could do it along with the positive changes we saw take place in Liam over the last year brought us to the decision that we should try it.

I am truly ecstatic to see Liam loving it. Liam only goes 3 1/2 hours a day and last week when I picked him up, wheeled him out to the truck, and opened his door, he started crying. He had full on tears with the rumpled up face. Liam pretty much never cries so I asked him if he was upset about leaving school and if he wanted to go back inside. He immediately stopped crying and looked at me. I told him he could have five more minutes and I wheeled him back inside where we surprised everyone by showing back up.

The staff was so happy to hear the story and it makes this momma's heart glad to know that he loves being there as much as he does and they love having him there. To know that your child is loved on by others is such a gift and when dealing with the needs Liam has, it's a special soul that looks past it all and loves on him anyway. Honestly, we have been truly blessed to have a lot of caring people in Liam's life, from church, to friends, to school, Liam's challenges have been overlooked by many an adult and they have loved on him in spite of them.

Math lesson

Circle time around the board for math

Liam's awesome one to one mentor Ronnie. He LOVES her.

I had Liam's annual IEP yesterday and it went really well. I think the goals they have are well thought out and the amount of interaction between therapists looks promising. One of the biggest changes for us is that because of Liam's success in the room and his desire to be there we are increasing his time to 4 hours 15 min a day.  Liam will start his day at 8:45 and end at 1:00.  I am really happy about the increase because when I would pick Liam up at 12:30 he would be in the middle of the math lesson and I always feel bad about having him leave before it's over. I would be taking him out of the circle and interrupting his lesson. It's probably part of the reason he got so upset at me the other day.

 

Liam's stamped tree

Liam was really proud of this cat mask.  He chose brown ears and the orange for the face and whenever I talk to him about it he just grins his silly grin. His teacher wasn't sure he really wanted brown because everyone else was choosing black but he told her twice that that was what he wanted and I think he's super proud of himself for making his own choices and seeing the results of it. 

Liam is having a great time. He's learning a lot. He's engaged with his teachers, therapists, and peers and he loves being there.  I'm so grateful for the support we are receiving and for the mentor God provided. It's truly been a wonderful season of change.

Looking back

It could be seen as petty, but one of the things I miss most about not having a neurotypical kid in Liam is the ability to take his picture.

Of course I can take smiley pictures all day long of him lying on the floor or sitting in his wheelchair. He smiles. A lot. But that's it. We can't go take pretty posed pictures at the park or the railroad track. No fun pictures of him with his siblings in silly poses. No family pictures hanging out at the river or the lake.

Looking at all the family poses repinned on Pinterest gets me melancholy because we can't ever do pictures like that. Liam can't ever pose for a photo.

I miss being able to huddle everyone together and snap a quick picture.

     Liam can't see where the camera is.
     He can't lift his head and hold it up to smile.
     He hits people in close vicinity because his arms fly up all the time which means nicely styled hair and outfits can quickly look wild.
     Sometimes he drools.

I concede that it's a small thing, but still something that isn't typical for us anymore.

Who's your tribe?

What happens when you don't fit in specifically anywhere and yet everywhere?  It's a question I pondered with my friend this past week and has had me ruminating over ever since.

Friendships develop and are cultivated over time because of shared memories, experiences, trials, and just a genuine love of and for the other person. Some friendships are forged through tragedies, life altering experiences, health issues, common interests and just for want of companionship. Today women can find any number of groups to belong to online, uniting even the most commonplace to the unequaled. It brings a sense of community and fosters relationships for woman bringing experienced and knowledgeable people who've 'been there, done that' to those who are just now heading down a new path.

People want to find purpose for their struggles. What better way to do that than to mentor others, to comfort others? Afterall, it's biblical.

2nd Corinthians 1:3-5
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the god of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves received from God. 

We want to comfort others.  We desire to share the comfort we have received with those who are hurting. Our exposure needs a purpose. We desire a tribe. It's also a mom thing. Women are designed to nurture and take care of others.

I'm probably not unique in that I could stick myself in any number of group associations. But I'm probably not too common in regards to the types of clubs I could find myself trying to relate to. Wondering where I could share my experiences and where I could mentor others brings me to the question of which one should I choose? Where is my tribe? Where exactly do I fit in?

Unfortunately I could choose any one of these:

• The Congenital Heart Defect group. My oldest daughter had a severe heart defect at birth resulting in congestive heart failure and open heart surgery before 6 months of age.
• The miscarriage club
• The multiple miscarriage club
• The stillbirth club
• The twin club
• The infant death club
• The twinless twin club
• The micropreemie club
• The cerebral palsy club
• The rarer form of cerebral palsy club
• The parent of a multiply disabled child club
• The care-giver of your own parent club

 Which one do I go with? I can't possibly go with them all. There's too many to choose from and I still feel some days that I shouldn't belong to a single one of them.

I believe God has made the choice obvious for me. He has opened the door for me in the area of special needs and continues to walk with me directing me through more doors, veering my life ever in the direction of supporting and encouraging those with special needs. I admit, I am amazed at how clearly he continues to direct my path in this area.

My pastor asked me the other day, "Did you ever think God would be having you do all of this and growing a ministry like this?"

My answer?

No.

No I did not.

Rubber neckin'

An open letter to all you rubber neckers out there:

We can see you staring. I can see you out of the corner of my eye, that place I don't want to look because I know you won't stop staring. Even though I don't give you direct eye contact I can still see what you are doing. I won't look at you because I don't want you to think that by my meeting your gaze I have approved of your irreverent stare. It is times like this that I am thankful my son is so near sighted and doesn't care about social eye contact. But you see, I don't have vision issues and I can see you staring, practically gawking. Do you think we can't see you or did no one ever teach you manners?

 If I hadn't had to throw my trash away I wouldn't have even given you a second glance, but I had to walk by you to get there and you just couldn't leave well enough alone could you. You just couldn't stop at staring. You had to go to the next level and ask a stupid question. Why? Do you have the same disorder? Then you should understand and start out by saying so and after relating to me I might be inclined to carry on a conversation with you. Does your sister, brother, uncle, friend, or cousin have a condition that looks similar? No? Then you are just asking to satiate your curiosity.

We are not out in public to answer your questions. We are out as a family, even though it's difficult, so we can experience some normalcy like everyone else. We are not here to answer your questions about what disorder my son does or doesn't have. I am all for education but not when we are at dinner. And not when you have been staring so impolitely. And not when you say, "What does he have?"  How insulting. How about a hello first? What do you mean what does he have? That is a big box of alphabet acronyms that you couldn't even translate let alone understand.

If you are so inclined to indulge in your curiosity, might I make a suggestion? In the future, when a person who is different catches your eye, they would be more interested in talking to you if you didn't stare so openly, if you didn't talk about them where they can hear and see you, and if you approached them in a manner they wouldn't find offensive. How about beginning a conversation with one of these starters?

•  A simple hello is a perfectly normal, typical, conversation starter. It goes a long way.
• What's his name?
• How is he doing?
• How old is he?
• My friend has some issues very similar to your son and I was wondering if they were the same.
• I noticed your son was having trouble, is he alright?
• Your son is adorable! I don't mean to sound rude, but I was wondering if you wouldn't mind sharing a little bit about him.
• Ask my son something yourself! He might not be able to speak back to you but you just acknowledged him as a fellow human being and that goes far in my book.

This note might sound snarky and while in a way it is, it is almost certainly an acknowledgment of the fact that I wouldn't ever mind speaking about my son and educating others about what issues he faces if I was approached in the right manner. Don't just blurt out *"What does he have?" as I'm walking by. You would never approach someone with no hair and assume they have cancer and shout out, "Whatchu got?"

* After he asked me what Liam had I asked back, "Who?" He then replied again with the exact same question. I felt like I gave him an opportunity to converse with me in an appropriate manner by giving him a second chance to rephrase or engage but all I got was the exact same question again. Liam was holding a stuffed otter and I reallllly wanted to say, "He's got an otter!" and walk away. Obviously I knew that wasn't the info he was after and I felt a tiny bit of education was in order. So I gave a very simplified response and said, "He has cerebral palsy." He immediately turned to the other guy he was with and that guy said something about so and so having that too. I waited. He didn't say anything else to me and frustrated, I just walked away.

Bye Bye Preschool

Liam is hitting a big milestone this month. He is finishing up his preschool years and will be leaving behind the slew of therapists and teachers we've come to know and love over the last few years. We will be saying good-bye and starting a new adventure with new therapists and new teachers when he starts KINDERGARTEN this fall.

We have had some tough decisions to make as to what is in the best interests of Liam for his education. I have felt pressure to put Liam in the school setting for numerous reasons, with the most important reason being that he would be able to learn (which he loves to do) and be visited by therapists better than what he could receive at home. If we decided to homeschool Liam like we do our other kids, Liam would only be able to receive minimal services from already overloaded therapists who would have to take their primary caseloads first then fit Liam in if they could. UNLESS Liam would be determined medically unfit for school, then he would be a primary student for them and would receive proper amounts of services.

Liam isn't medically fragile though. It can be said that there is a definite safety concern because he does have an airway issue that remains a high concern for me. He also has a tiny issue I might have mentioned here before: he throws up a lot. Last year, I felt that the teachers and therapists didn't feel Liam needed a one on one and was told it's very unlikely he would get one (that it's very rare) which had me very, very concerned about sending him off to kindergarten. After that IEP I let the school year transpire with out much concern about kindergarten. I knew I wouldn't feel safe leaving Liam without a one on one and figured I would be telling them as much when the end of this year came around.

We are now gearing up for a final big meeting to prepare everyone for Liam's arrival. There are a lot of reports to go through. His file is huge. He isn't a simple placement. He could honestly go either way: home bound or in a special needs classroom. We could surely have the airway concern and vomiting issue be such an issue that it allows Liam to be home bound. Or, we could insist on the one one one so that Liam is getting the proper care while receiving an education that Liam deserves.

However we decide, there has been numerous therapists, teachers, psychologists, and us parents going over all of his files and wanting to do what's best for Liam.