30 March 2018

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.

08 February 2018

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. 

04 February 2018

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.


24 December 2017

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!