Wow! I can't believe it's been 9 weeks since my last post about my ALS journey. I had originally thought I'd be able to write every week or two, but that clearly hasn't happened! Honestly, I've been stuck in this mindset of waiting for my appointment with the ALS neurological specialist and I haven't allowed myself to be thinking of much else. On August 3rd, I was referred to the specialist, but he couldn't see me until October 6th. Nine weeks after my last appointment!!! With all the implications of Covid on society, and with summer holidays scheduled for many, I understand why it could take this long, but as I face the ALS diagnosis, I'd love to see our health care system speed things up a bit!
I had the appointment this week and ALS is confirmed as the cause of my health issues. I can expect to have my first visit to the ALS Clinic at the General Hospital within two weeks. They have a team of support people who will help me with breathing techniques; physiotherapy; walking apparatuses; home visits to see what changes we need to make to our house, etc. I'm looking forward to that support as things are getting progressively "worse". Walking for more than two blocks is tough to do. Starting to feel mucus build up in my throat. I have a constant tickle in my lungs, likely from fluid build up that I can't cough out. Some of these things can hopefully be improved, and others I'll be taught how to live with. But, it's another two week wait until that process starts. Waiting can be torturous to your mental health!
In March, prior to my ALS diagnosis, I was thinking ahead to retirement and wanted to replace my 10-year-old car with a pick up truck so I could get stuff from Home Depot to help renovate the kids' houses. So I ordered a Honda Ridgeline in March and then the semi-conductor chip shortage kicked in and I had no idea as to when the truck might show up. And then, with the ALS diagnosis I started to question whether I really needed the truck given that I might not be able to drive any vehicle at all! Then, on my 61st birthday on September 15th, I get a call from the dealership that my truck has arrived! I took that as a sign from God that it was okay to get the truck.
I've used it four times already to haul stuff that would not have fit in my car. I'm loving it! The six-month wait was okay.
Sometimes waiting isn't a passive activity, but rather an active activity. I think of Hannah and Connor who are expecting a baby boy in mid-November.
Waiting for this baby isn't just sitting around. You've got to be taking care of your health; be planning for how the maternity/parental leave impacts your finances; prepare a room in your house for the baby; get all the gear that you need and so on. Waiting is an activity!
Same for Deagan and Brianne who are waiting for the day of their wedding. I am so grateful that they have moved the wedding date up from next summer to this December. It will be just the immediate families for the wedding, with a big party next August. Here is their official engagement photo:
Waiting on December 28th to arrive is a journey. D&B are putting effort into marriage courses; finding the right clothes to wear; working on the vows; planning the venue site for the ceremony and dinner afterwards, and so on. "Waiting" requires their dedicated efforts, but brings more and more joy each day.
As you know, we've all been praying for a healing miracle for me -- that ALS would be removed forever from my body. But I'm still waiting on that miracle to happen! What I have come to realize is that waiting on God is not like waiting for my truck to arrive. Waiting on God is a lot more like the pregnancy and the wedding. It is actively showing dependence on, and obedience to, God. God is sovereign and nothing we are presently experiencing is outside of his eternal decree and direct oversight. I am dependent on God for my next heart beat -- and so are you, because we can't control that! It says in Job 1:21 that it is the Lord who gives and the Lord who takes away. God is in control, and I have to be willing to wait on his desire and commands for my life. Waiting on God involves avoiding being controlled by fear and worry. The remedy to my fears is God himself.
"When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?" Psalm 56:3-4
Waiting without God would be an impossibility. And for all of us, we are waiting for the Covid crisis to blow over. I encourage you to not just be sitting around idly, but instead to be waiting upon the Lord and to be considering all that that means in light of God's word in the Bible.
I've updated my prayer points which you can find on the home page of this website. Thank you all for being on this journey with me. I love you all.