Popular Post BlsdMama Posted July 22 Popular Post Share Posted July 22 I'm sorry I've been MIA. I needed some down-time. The update: My speech is mostly gone now. My volume is low and the speech is very garbled. We've discovered our 11yo has an uncanny ability to translate my speech. My family can mostly decipher what I'm saying but I think they've begun a habit of listening intently? I need to begin using my Tobii. {I had a feeding tube put in. I LOVE it!!! Too tired to eat? Not in the mood for healthy food? Tube. Everyone should get one. The insertion was a piece of cake. The recovery was rough. It took a lot out of me. I wound up in the hospital with strep and my body just didn't respond well overall. I use a bi-pap at night to help me breathe lying down, but thankfully do not need it during daytime hours. DH's boss is lovely. They've all been called back to the office which we had been told would never happen. (eye roll) However, DH was given permission to be hybrid. So he gets us up and dressed every AM and he goes into the office (to work remotely, lol.) Then comes home on his lunch hour, helps me with a potty break, and works the rest of the day from home. It's remarkably smooth. We took advantage of a terminal illness clause in my life insurance policy when my breathing numbers began to fall and were paid half of my policy. We used that to buy a van I can still (unbelievably) drive. We also finished every single project in the house so that if we decided to move tomorrow, we could put a sign in the yard without stress on DH. One of my son-in-laws wanted to switch from his job to remodeling so he quit his job and worked for us for six months. The work he did was nothing short of amazing. We also hired friends with a renovation company to do the far more complicated kitchen professionally. It worked beautifully and they ended up hiring DSIL full-time. It is so weird to be so sick and still feel so good. It's weird to feel fully "me" on the inside and have the external so broken. I still derive so much joy from the day to day and I remember the early days of diagnosis believing that this stage would be passive torture. I know this is largely due to my husband who still treats and supports my ideas and decisions as a fully capable partner. We graduated our middle child this May. She's headed to the U of Iowa on one of five Bright scholarships the university gave out to kids who demonstrate academic merit and wrote an essay on a difficulty they faced in their lives, and, I suspect, due to 300+ hours of community service. It will cover all of her expenses for all four years. Our college senior traveled abroad to Korea for a semester and is back. Our oldest son is prepping for a spring deployment. Two of our oldest daughters had little boys. And we are planning on homeschooling yet again this year - 11th, 9th, 7th, 6th, and 5th. The 7th and 6th will each take in-person classes and an online course to prepare them for whatever their future holds. It's a strange spot to be in but not uncomfortable. Thank you for your prayers and kind thoughts. The most difficult part of a person with ALS is its relentless progression. You mourn and learn to cope with one loss while it begins to attack and steal something else. Additionally, it is exhausting for the caregiver. I'm incredibly grateful for slow progression, but at the same time, my husband has had an incredible weight foisted upon him. While mentally I'm me, physically I'm a toddler - cut up all my food, help bathe, help potty, dress me morning and night, tuck me in, administer meds, etc., all the while having to significantly take on more household chores. The constant ongoing necessity of providing care coupled with being a dad and working full time can wear a person thin, kwim? 73 27 1 Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted July 22 Share Posted July 22 So good to see you here @BlsdMama. It is so important to hear your thoughts so thank you so much for sharing them. I learned so much from what you said. Congrats to all your kids. Doing so many amazing things! I hope you take lots of pride in that. It is all because of you they are doing so many cool things. I am so thankful you have such an amazing spouse and children. Such an amazing blessing. I am just sending a lot of good thoughts to you. 11 Quote Link to comment Share on other sites More sharing options...
scholastica Posted July 22 Share Posted July 22 So good to hear from you. Your family is a beautiful example of selfless love and service. Praying for all of you. 3 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted July 22 Share Posted July 22 Thank you so much for updating us. It's good to hear of your family's love and grace toward you as you all adapt to this awful disease. I'm grateful that you are not in pain, and that you are experiencing joy in spite of the circumstances. And what a burden lifted knowing that the house is in good shape for whatever the future holds, and that your kids have had some time to be prepared for educational changes. I'm praying for you and your family. 5 Quote Link to comment Share on other sites More sharing options...
saraha Posted July 22 Share Posted July 22 Your post is beautiful. I can only aspire to have the grace and eloquence you do. 13 Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted July 22 Share Posted July 22 Thank you for updating. I know it sound weird coming from someone you've never met IRL, but I really do think of you very frequently, and wonder how you're doing. 11 Quote Link to comment Share on other sites More sharing options...
LifeLovePassion Posted July 22 Share Posted July 22 What Pawz said. I was just thinking about you. Thank you for updating us. Quote Link to comment Share on other sites More sharing options...
JennyD Posted July 22 Share Posted July 22 Thank you so much for the update. As others, I too have been thinking about you and wondering how you were doing. Congratulations on the grandbabies! What a joy they must be. And kudos to your daughter for her accomplishments -- that's just amazing. You and your family are in my thoughts. Thanks again for checking in here. 1 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted July 22 Share Posted July 22 I'm so glad to hear from you BlsdMama. I will remember to pray for your DH, who sounds amazing. How many grandchildren do you have now? I'm so impressed by your dedication to homeschooling. 2 Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted July 22 Share Posted July 22 Thanks for taking the time to share an update with us. I'm another who thinks of you and prays for you. May God continue to bless you each day. 1 Quote Link to comment Share on other sites More sharing options...
Kareni Posted July 22 Share Posted July 22 Thank you for the update, @BlsdMama. Sending all good wishes to you and your family. Regards, Kareni Quote Link to comment Share on other sites More sharing options...
Kassia Posted July 22 Share Posted July 22 Thank you for taking the time to update. Always thinking of you and your family. Quote Link to comment Share on other sites More sharing options...
Hannah Posted July 22 Share Posted July 22 Your post has so inspired me today, thank you! Your husband sounds absolutely amazing, as do your children. 1 Quote Link to comment Share on other sites More sharing options...
klmama Posted July 22 Share Posted July 22 What a blessing that your joy in life has not diminished, despite the increased difficulties! Thank you for sharing how things are going. I'm praying for you! 1 Quote Link to comment Share on other sites More sharing options...
Irish Posted July 22 Share Posted July 22 (edited) Thank you for your update! You are an amazing woman! and your husband and kids too. Praying for you. I grew up in the Quad Cities and have a sorority sister from Illinois Wesleyan Univ. who has had ALS for 20 years (she's 55 now). So, even though I don't post or respond much here, I always look for your posts and somehow feel like I wish I could know you in real life. My sorority sister is Aimee Chamernick, she lives in the Chicago area and has had many news stories done featuring her. Edited July 22 by Irish Quote Link to comment Share on other sites More sharing options...
Ottakee Posted July 22 Share Posted July 22 Thanks for the update. ALS sucks. Do you qualify for any inhome help? Like under Medicare (if you qualified for disability fast track). Or a friend group that could help out once in a while? were you able to type all that by hand or do you have an eye gaze or other form of typing? 2 Quote Link to comment Share on other sites More sharing options...
QumaCote Posted July 22 Share Posted July 22 It is so wonderful to hear from you!! I enjoy the updates on your beautiful family!! Thank you for always showing such beauty, grace, and joy!! Gentle hugs!! 1 Quote Link to comment Share on other sites More sharing options...
wintermom Posted July 22 Share Posted July 22 It's so great to hear from you! Big hugs to you and your dh, your dc and your extended family and friends. So nice that you've got a lot of support, and that you dh has the support of family and friends. 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted July 22 Share Posted July 22 Thank you for spending your time and energy to update us. We know your plate is overfull. Continuing to pray for daily mercies and for you to be given hope and peace. This is such a hard journey you are on, but my prayer is you never feel alone in it. 4 Quote Link to comment Share on other sites More sharing options...
mominco Posted July 22 Share Posted July 22 Kelly thank you for the update I am so thankful you did this for us.You are your family have been in my thoughts. HUGS Quote Link to comment Share on other sites More sharing options...
bookbard Posted July 23 Share Posted July 23 Thanks for updating - like many others, I often think about you and how you are going. I'm so glad your husband and family are so supportive. 1 Quote Link to comment Share on other sites More sharing options...
mom31257 Posted July 23 Share Posted July 23 @BlsdMama, I was so happy to open the boards and see you here! I read your post over and over. I love to hear the joy and thankfulness come through in your words. You inspire me so much! I pray for you all, especially your husband who has so much on him. Thank you for taking the time to update us! 3 Quote Link to comment Share on other sites More sharing options...
kbutton Posted July 23 Share Posted July 23 I’ve been wondering how you’ve been doing, and I’m so glad to find out that you’ve been so busy still being you. Prayers for your DH and for continued adaptability for you and everyone in your world. Quote Link to comment Share on other sites More sharing options...
fraidycat Posted July 23 Share Posted July 23 Thank you for the update. Your and your family are accomplishing great things in the face of great adversity. It is a testament of your strength of character and determination that shines through all of the accomplishments and adversities. 2 Quote Link to comment Share on other sites More sharing options...
popmom Posted July 23 Share Posted July 23 Agree with everything else that has been said. It’s good to “see” you here today. Thank you for sharing your experience with us. Quote Link to comment Share on other sites More sharing options...
Porridge Posted July 23 Share Posted July 23 Much love to you and your family, @BlsdMama Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted July 23 Share Posted July 23 It’s so sweet to hear from you. Thank you so much for sharing. Quote Link to comment Share on other sites More sharing options...
YaelAldrich Posted July 23 Share Posted July 23 Wow! Thank you so much for the update! It's great to hear that your family is growing and thriving and that you are taking pleasure in those joyful times. I hope and pray that you and your family continue to experience those kind of moments during your illness. I'm so glad you got all the renovations done. Now you are able concentrate on more important issues and be able to pivot as needed. The Hive Mind keeps you and your family in our warmest thoughts and prayers Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted July 23 Share Posted July 23 (edited) Wish there was a love button because like is not enough. You continue to give to this community. In Palestine they use the word SUMUD to describe a person with utmost forbearance. Thank you for taking the time and effort to post. God be with you every step of the way. Edited July 23 by Chris in VA 1 Quote Link to comment Share on other sites More sharing options...
sassenach Posted July 23 Share Posted July 23 On 7/22/2024 at 7:08 AM, BlsdMama said: I still derive so much joy from the day to day and I remember the early days of diagnosis believing that this stage would be passive torture. I know this is largely due to my husband who still treats and supports my ideas and decisions as a fully capable partner. I think this excerpt is going to stick with me for a long time. This is beautiful. 4 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 24 Share Posted July 24 Thank you for the update. I think of you so often. You are so inspirational. Quote Link to comment Share on other sites More sharing options...
math teacher Posted July 24 Share Posted July 24 Thank you for taking the time to update!! Your grace and poise during adversity is amazing!! Quote Link to comment Share on other sites More sharing options...
MercyA Posted July 24 Share Posted July 24 Oh, Kelly! It is so good to hear from you! Thank you so, so much for the update. You, your husband, your family...you are all amazing. ❤️ Sending you much love. Quote Link to comment Share on other sites More sharing options...
DawnM Posted July 24 Share Posted July 24 What a lot to have to face and deal with. I cannot imagine at all, but you are doing a fabulous job. Hugs. Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted July 24 Share Posted July 24 (edited) Thanks force taking the time and energy to update us. It is great to hear how well your kids are doing. Congratulations on your new grands! You and your family are an amazing testimony of Love and Grace. Praying for you all this morning: the peace that passes understanding and provision for all the needs. Edited July 24 by ScoutTN 1 Quote Link to comment Share on other sites More sharing options...
Murphy101 Posted July 28 Share Posted July 28 I’m so glad to “hear” an update on you and your beautiful family. Life is so good. 💗 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.