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!

29 November 2017


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?

19 September 2017

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. ;)

23 August 2017

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. 

16 May 2017


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.

20 April 2017

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. :)

03 March 2017


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.

post signature

01 March 2017

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. 💗

post signature

24 February 2017

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.

post signature