This is a very special guest post. This family has become very good friends of ours and they are a fellow Autism family that has recently been struck by tragedy. You may recall Jillian as the creator of the uber awesome Bath Bombs that helped kids with sensory issues feel better in the bath tub. I was giving these away awhile back. I wanted to be sure to share this families story and their plea for help.
The McCabes selflessly helped my family when we were faced with the sudden onslaught of violence in our neighborhood that almost got me killed.
These are the unedited words of Jillian McCabe.
My name is Jillian McCabe and I have been hacking into my husband’s social media accounts to spread the word about our situation. A wife hacking into her husband’s anything is usually bad form and a sign of a tumultuous marriage, however, I have a good reason for doing so. I promise. Today is actually our wedding anniversary and I have to say we have a pretty good marriage. J
I “met” Rob Gorski and his family through their amazing life-changing blog. Lost and Tired has been a source of real support for my husband and I and I am honored that Rob is willing to share our situation with you, his readers. Thank you for taking the time to read this.
My husband went from being able to walk/drive/work/make money/talk/throw our son in the air to being diagnosed with MS, having a mass in the brain stem, he is now walking with a walker, not being able to drive/work/make money, he now slurs his speech … Matt went from the sole bread winner and provider to not in a matter of a few weeks.
My husband Matt and I have a son named London and we run the blog www.autisticlondon.com – Although we have not updated it in a long time. I would stay home with London full-time and Matt would work full-time and run his own side business, www.semitechnical.com. Matt is an amazingly selfless person; such a loving husband and father and never complained about working so hard to get us by. Seriously, he would get up early at 5am, work on his side projects, take a shower and then go to work for a full 8 hours, then come home, play with London, spend time with me and then go back to his side business projects. Having a single income family is always a roll of the dice as you are relying on one person to bring in the resources and crossing your fingers nothing happens to that person. Well, something in fact did happen to that one person, my husband Matt.
After a series of events, I rushed Matt to the emergency room when he woke up off balance, walking “sepentine” and banging into walls, slurring his speech, having numbness in the head/body and the inability to stand without falling over. When Matt mentioned “right arm,” that is when I completely lost it. Matt had “word salad” when I asked him a question.
I was running around getting our son London’s diaper changed, getting him dressed and getting myself dressed to get Matt to the ER and Matt actually hobbled over to his computer desk. Matt was concerned about finishing an email project at his computer, swirling in his chair as if he was hoola-hooping in a sitting position he was so off balance. I told him we were going to the ER and he fought me saying he had to finish his project. That is the kind of person Matt is; he cares so deeply for his family and his clients he wasn’t concerned about his own discomfort, he wanted to finish his work. I know my husband so I called the ER and registered Matt saying he was exhibiting stroke symptoms. I told Matt, “You have an appointment at the ER, I called them and they are expecting you!” He was so so mad at me that I called the ER, but it got him to go to the hospital. When we got there, they rushed Matt right in.
Matt’s laying in a hospital bed talking about the email project he was working on, complaining we don’t have insurance, we don’t have the money for hospital bills, he has a shopping cart website to work on, etc. etc. etc. The nurses are attaching things to him, putting in an IV, doing his vitals and he would not be quiet about his clients and the work and this and that. After taking Matt’s vitals, the nurses ordered an emergency MRI. I had London with me and he was SO GOOD! The nurses were saying that they couldn’t believe London was severely autistic – he was so well behaved. London kept putting cotton balls and bandages on Matt’s head; I think he was trying to fix him. It was sad and sweet.
The results of the MRI were that Matt had a mass in his brain stem and they were transferring us immediately from Hood River Providence to Portland Providence. Luckily, our great friends were there to take London.
FROM BAD TO WORSE:
The neurologist wasn’t even at the hospital that night. I felt like we were transferred quickly for no reason. The nurses and doctors weren’t telling us anything; every time they said we might be able to go home, they changed their tune. I had friends and family wanting to come in to see Matt, but we literally had no news. Any time I was going to text or call anyone to come see us or give them an update, that hospital “double knock” on the door would come and someone was in to check vitals, or administer meds or consult with us or discuss finances or give Matt another test.
It was just a horrible blur. It was incredibly hard for me to see Matt in that hospital bed. It was a lonely and emotionally draining situation.
Then the news came in that Matt was going to be visited by three therapists, Therapist Past, Therapist Future and Therapist Present: OH WAIT, sorry… that’s that one Christmas movie… He was being visited by an Occupational Therapist, a Speech Therapist and a Physical Therapist – All three of them reported that Matt would need to continue all three therapies at home. WHAT?! That was shocking. The situation just went from bad to worse as they say… Then Matt would have to use a walker. Then Matt would need to go in for IV Methyl Prednisone treatments at the hospital. Then we would have to apply for the hospital charity program and every other program so we could to get by. Any time I would have the financial discussion with any of the hospital staff, they said “You need to worry about your husband’s health and we have a charity program. It was designed for people in your situation.”
Luckily we had our dear friends offering support and they even came in to Portland to see us from HoodRiver and Washington. Our friends told us that they would happily take London for as long as we needed and it was so comforting. Our friends brought London to the hospital to see us as well and it was hard to see him go. Matt’s family showed up to see Matt.
Then we FINALLY got to go home.
When I came home, my house was clean, my laundry was done, my stuff was organized, there were flowers and a Get Well balloon and a Papa Murphy’s $5 Fave Pizza waiting in our fridge for London (one of the only things he’ll eat!) Our friends really are the greatest people of all time.
LONG STORY SHORT (RESULTS!):
Matt’s spinal fluid came back positive for Multiple Sclerosis. The neurologist does not believe that the mass in Matt’s brain stem has anything to do with MS. We are on a 2 week break from Prednisone (steroid) to see what Matt’s mass does in the brain stem. The brain stem is the size of your thumb; Matt’s mass is a little over an inch. Matt’s mass is swollen and suffocating his nerves.
I am taking care of our son London and now Matt full-time. Luckily, we are receiving unemployment from when Matt was laid off. I am applying for any and all assistance available. The real blow for us was that we were denied charity services from Providence Hospital because they know our situation is so dire, we will receive state assistance. SSI can take months to go through and I am scared.
Our friends and family are stepping in (we love them!) and taking London for us or dropping off groceries, filling our freezer with meals. So many people are helping us and I appreciate everyone.
HOW CAN YOU HELP?
* My amazing brother-in-law, Andy McCabe of claimsdelegates.com has been working tirelessly for us; he has a full-time position and a family at home and he is doing whatever he can to support us. He has set up a charity for us at http://www.youcaring.com/medical-fundraiser/help-matt-kick-ms-in-the-butt/99747 and has encouraged us to set up a wish list on Amazon at http://www.amazon.com/gp/registry/wishlist/2OS64J2UAZMP0/ref=cm_wl_rlist_go_o?
* If you want to send Matt a note of encouragement, that would be something he desperately needs right now. Our address is 2251 Clearwater Lane, Hood River, OR97031
* If you are an Ingress player and want to kidnap Matt and go attack some portals and get him out in his walker, you are most welcome.
* If you want to come over and play video games with Matt or play some board games like Catan or Dominion or Ticket to Ride or Magic, Get a group together and let’s do this. Matt needs a moral boost, he needs to be surrounded by people that care and he needs to get back into doing the geeky things he loves to do… and as a very important side bonus, it will help him escape a bit, think strategically and move his hands.
* If you are a praying person, pray for us. If you are not a praying person, just think a good thought.
I love my husband and he has taken care of my son and I for years and years and now it’s time for me to take the helm. I am scared and I am reaching out. I hope I am not coming across trashy or over-reactionary. I must explore every avenue to take care of my family right now.
Thank you for your time. 🙂
Jillian Meredith McCabe
2251 Clearwater Lane
Hood River, OR 97031
My heart goes out to this family, I was in the exact same situation 4 years ago with my ex husband also being diagnosed with ms. I wish them all the best during this difficult time and thankfully they have family support.