Pansies on Christmas Day
That day now seems like a million lifetimes ago.
Since the year began there have been many appointments with a neurology specialist to further investigate the symptoms that Brett experienced all of last year.
Many questions were asked and many tests were performed.
The conclusion is that he has ALS (aka: Lou Gehrig's Disease).
Yesterday we met with the Doctor who spent a long time explaining what to expect with this disease and answering our questions.
After that we met with the nurse, physical therapist, occupational therapist, speech therapist and nutritionist. Apparently, it takes a large team to manage the symptoms of this disease. All were very compassionate and informative. Still, we left feeling completely overwhelmed.
We learned that there are only two drugs for this disease.
Neither cure, rather they hopefully slow the progression. One is extremely expensive. We will go through a process to see if we can receive it more affordably. The doctor is a specialist in ALS and has been at it for many years. He said he was sorry that he didn't have more to offer and told us that they need better drugs.
I'd much rather be chatting about happy things ~ normal things ~ boring things. Basically, anything but this.
But, this is now our reality. A new journey.
As I struggle to find my footing, I can see how blogland will be a welcome distraction... just like it has always been for me. I hope it will also be a way for me to continue to look for the bright spots even on the hardest days.
Ordinarily the first place I head when life threatens to overwhelm me is the garden. The January garden didn't seem like a very hopeful place to offer me the comfort I was seeking. But, there in the furthest corner was this teeny, tiny daffodil. I wouldn't have even seen it had I not ventured outside. Although it doesn't look like much, I knew it needed to come in with me. The following day I was sitting near it talking on the phone and noticed the room smelled just like springtime. I soon learned the source was that tiny daffodil.
I took that as a hopeful sign. While it certainly didn't solve the problems we are facing, it reminded me of the seasons of life.
Nature has a way of doing that for me.
Now, here in the southern USA, we are bracing for a large winter storm. Here they are predicting ice/sleet Saturday afternoon through Sunday. That is always a huge concern for power outages. I am really hoping that will not be the case.
I mentioned how I already dislike 2026.
In addition to Brett's health, we have a large infestation of mice in the garage and I have been dealing with jaw pain after a dental procedure. My fingers are crossed that that issue is finally resolving itself. At this point I don't think I could handle a prolonged power outage.
If you are in the path of this storm, I hope you stay safe and I also hope your new year is off to a good start.


I'm sorry you're both going through so much.
ReplyDeleteYou're right to take your delights where you can, and certainly narcissi have such a positive, powerful scent of spring.
I hope your weather doesn't turn out to be as dire as forecast - it makes our winter seem very tame.
I am so sorry. There are really no words for this except that I'll be praying for you both. I'm glad you had this little spot of joy.
ReplyDeleteWe've had a week of terrible weather, about 26 inches of snow in less than a week, and now this extreme cold. I hope it doesn't hit you too hard and you don't lose power.
I'm sorry about Brett's diagnosis. I'm sure it's hard to cope with the unfortunate news. It's also unfortunate that the mice have infested your garage but that, at least, can be dealt with one way or another. I hope your jaw pain is getting better. January hasn't been kind to you. Hopefully the winter storm that is heading your way won't involve power outages. Hopefully soon we can retreat to our gardens....January is just about done. (((hugs)))
ReplyDeleteOh Kim I am so sorry to hear this news. That is a lot to take in. Of course I will be praying for the two of you.
ReplyDeleteI'm very sorry that you are both going through this. I'm glad to read he has you to help and a good team of doctors that sound to be kind and helpful.
ReplyDeleteThe photography is well done.
- Ivy
Oh sweet Kim, my thoughts and prayers are with you and Brett. You may have noticed I haven't been here much lately as, like you, my dear hubby has been so ill and suffering from cancer for over 19 months. My life has changed drastically too! Bob is now in hospice care as he was told at the the cancer center visit on New Year's Eve day that he is terminal and all treatment was to be discontinued. We have tried it all, surgery, chemo, immunology, radiation, but the damn cancer has metastisized from bladder to lungs, liver and lymph nodes. Aggressive, fast growing - we did all we could and had a great team here in Raleigh, but cancer is often devastating. Ninety one medical appts. last year alone - that's not even counting three hospital stays - have worn us out. We can only be grateful for the wonderful times we had over so many years.
ReplyDeleteTonight we snuggled with fingers crossed that this horrid ice storm won't take out the power as Bob is on oyxgen 24 hrs. plus needs the heating working as he's cold all the time having lost so much weight. Like you, 2026 has not started well for us. Being a caregiver is whole other story. Please know I am holding you and Brett close to my heart. I'm familiar with ALS having had a dear friend with it, and pray for you both on your journey ahead. If you need an ear or a shoulder, mine are available dear Kim.
With love, Mary
Dear Kim, I'm so sorry to hear about Brett's diagnosis. Thankfully it sounds like you have a good team and support for the uncertain road ahead. I hope the winter storm has not been as bad as predicted and that all the other issues you are facing sort themselves out very soon. Take care.
ReplyDeleteOh Kim, I am so sorry to read of Brett's diagnosis. What life-changing news. I am glad that you have a good team of medical staff to help you navigate these difficult waters. I pray that you will qualify for help with the expensive medication. And I will pray for strength and grace as you walk this path.
ReplyDeleteWe've heard a lot of warnings about the ice storm and I hope that you are able to retain power. Hugs, Lorrie
I am so sorry to hear this. Hugs so much!!!!
ReplyDeleteOh my goodness, Kim, I'm so sorry to hear about Brett's diagnosis. I can only imagine how overwhelming this must be for both of you. I wish I could say the "perfect" words, but I don't have any. All I can do is keep you and Brett in my heart and offer up prayers to whatever higher power is out there. And you certainly don't need a mouse infestation (have you called a pest control company?) and dental pain on top of everything. I hope you didn't lose power either. Big hugs to you, my friend.
ReplyDeleteI am very sorry that you are going through this. Your photos are lovely. Warm greetings from Montreal, Canada.
ReplyDeleteI am so sorry for the pain and suffering you are enduring right now. I will pray for you Kim, that God will give you His strength and peace as you walk through the valley. Kathi
ReplyDeleteI hope you are doing okay today. I will keep praying for you and your husband.
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