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

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?




05 October 2017

Our Journey to Cannabis Oil Part 2

I left off some people on my last post who use CBD oil and I didn't even think about it until later. I realized I didn't even mention myself or my mom. :)



My mom was diagnosed with something called familial tremors. She presents similarly to someone who has Parkinson's and it is treated with meds just like Parkinson's but technically it isn't Parkinson's. I knew CBD oil has been proven to be effective in treating people with Parkinson's (check out projectcbd.org for more info) so I put my mom on it to see if it would help her.

She's been on it a couple of months now and had a check up with her neuro recently. She took her trusty bottle of CBD to see what he thought of it. It's always wise to check with your doctor but keep in mind they aren't always supportive of alternative and natural methods for treating health issues and she wanted to get his opinion.

She shared the oil with him and apparently he laughed saying it wouldn't hurt but it wouldn't help her at all either. Then he proceeded to tell her that she looked like she was improving in her tremors since he'd seen her last and said he'd see her again in a year. Nothing had changed in her meds, she hadn't made any improvements before now, but here she was looking better than ever and he even noticed it but it couldn't possibly have been the addition of the CBD oil, eh?

My mom traveled out of town recently and didn't want to bring her oil on the plane. By the time her trip was up she was shaking worse and worse. As soon as she got home she got right back on it and the tremors started to diminish right away...but CBD oil couldn't possibly help her, huh?

I also forgot to mention myself. I was "diagnosed" with fibromyalgia, gluten sensitivity, IBS, and EBV. I would suffer severe attacks starting with pain in my stomach and pain in my legs that would radiate into my hips. I would be on the couch or the bed for days because my joints hurt so bad I couldn't function. I would only get up to take Liam to school or to pick him up. I was taking oxycodone or ibuprofen to help with the pain but nothing would make it go away completely, it would just have to stop on it's own. When I researched how many things CBD oil was good for, I knew I needed to be on it too. I've been on it for six months now and I've only had one attack since. Not only was it very short, it wasn't nearly as painful as before. With CBD oil my attacks have stopped and when it does happen to occur it is nothing like they used to be. I have changed my diet along with adding in supplements to help fight the EBV, but I know the CBD oil is making a huge difference in helping me get my life back. CBD oil brings the body to homeostasis and I desperately needed that.

So, that's four of us in my family on it with successful results. I have many more friends and clients using CBD oil to get their life and health back on track. Do some research. Check out how many things phytoCannaBinoid Diol oil is good for. You might be shocked to see the studies done and all the anecdotal info on people using it to treat so many different things with success. Cannabis is healthy, non toxic, and one of the most important plants for your body that you can use. Everyone knows turmeric and ginger are good for you. These are plants that people take in supplement form and CBD is just one more you need to add to your regimen!

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. ;)