I would like to thank all of you for all of your support this year. I have decided to stop posting. Caring for Dear Son is a lot of work and this has been an incredibly difficult year. He has grown a lot and is much bigger now, almost 140 pounds. He has lost a lot of skills and can not roll over. The physical demands to care for him, the lifting, the changing, etc. are taking their toll. I give his last medicine at midnight, and am frequently up at 1:30 a.m. to roll him over and then again at 2:45 a.m. and several times after 3:30 or so until I start his first g tube feeding at 4:30 a.m. Any later than that, it won't be completed in time for him to catch the school bus. With these hours, I find I am not able to be very creative, or even want to write much, since my focus is taking care of Dear Son, working part time and trying to get some additional sleep as well as managing all of the medical bills and supplies related to his care. Caring for Dear Son, and children like him, is a twenty four hour a day job.
My goal has always been the same. To keep him at home and care for him as best as possible. I am doing that now, it's just taking a lot more energy.
It has been a real pleasure meeting all of you. I have learned so much from all of your blogs. I will continue to read them as time permits, and look forward to the Grand Rounds every week. It has been a difficult year and your support and prayers for Dear Son during his MRSA pneumonia will never be forgotten.
Thank you so much for your friendship, your support, your concern and your wonderful comments. You are the best.
A midwest mom shares and reflects on the love for her Dear Son Matthew and the challenges of everyday life with a severely disabled young man. In addition, she shares her love for decorating, organizing and keeping a clean home. ©2006-2024. All Rights Reserved.
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31 comments:
I have recently started to read your blog. You are an amazing mother!! Good luck with Dear Son, the care that you give him is excellent.
I will continue praying for you and dear son that he is always in comfort and pain free.
Ashley
Aaah, I'm sorry to hear it - I really like reading your blog. Although I know they can be a bit of work to update, what with how I post every couple of months at best...
Best of luck to you both!
I have really enjoyed 'meeting' you through your blog!
I will be praying for you and dear son!
Thank you for your wonderful blog. I have learned so much from reading your posts. Best of luck.
I can sincerely understand what you're going through and deeply comprehend. Best of luck with everything you and your son are going through. Please touch base once in a while. It doesn't have to be creative. We all love you very much and support you with everything we've got.
Dream Mom, we will miss you! I certainly understand how tired you must be. You are on my bloglines so when you do decide to come back and post again we will be here for you.
You're not going to take your blog down are you?
Good luck to you and dear son!
Many hugz and Prayers to you both.
Best wishes to you and your Dear Son. Thank you for taking time to share so much with all of us.
I will miss you, but your son certainly comes first. I have enjoyed your blog.
I have learned a great deal from your blog, and you have helped me be more grateful and thankful for my own son. I will miss you and hope that you will let us know how you both are getting along(perhaps through another blogging friend?) You will always be in my prayers. All the best!
You are an incredible woman and Mom to DS. Thanks for letting us into your world and giving us an increased awareness of the special needs child and his family. God Bless and know that you are admired, loved and will be missed from afar. Checking your blogspot several times daily has become a ritual for me and many of your readers.
The best of luck with dear son.. I have only recently begun reading your blog but in that short time i have learned so much from you. Thank you for sharing with us..I will keep you and dear son in my daily prayers.
My heart is saddened, but I completely understand. Know that I nejoyed meeting you and dear son...he's such a handsome guy! (wink)
You both will always continue to be in my thoughts. Hugs and love!!!!
Don't be a stranger!
I'm so sorry to hear you won't be blogging any more. I've enjoyed reading about your and Dear Son's life right from the start. All the best for the future and I'll add my voice to those hoping you might be able to give us a little update once in a while.
I'll leave you with one last trying-to-be-helpful thought: the two little'uns who tube-feed that I know both have portable pumps in little bags that look like backpacks which hang off their wheelchairs and can be used when they're out and about. Would that be an option for Dear Son to relieve the time pressure on you in the mornings as he could then finish his breakfast on the way to and at school?
My partner of 24 years is disabled (MD) and while it is a very different life you have shared, I have found it a window into understanding some of what his parents went through so many years ago. They were told he probably wouldn't live past his teens (they weren't sure what type he had) and he grew up never expecting to be "old" - he'll be 49 never Feb. At at time, when the prevailing authorities said he would never live on his own and should be placed in an institute, they choose to keep him home and fought to get him a good public education - mainstreaming disabled children was just starting.
Reading your honest and loving entries has sparked many conversations with my partner. I will always be thankful to you for this - even after a quarter of century, there is still new things to learn about each other - we humans are complex creatures.
I completely understand why you need to stop blogging. Time is so very precious and finite. I'll join the chorus of "we'll be here when/if you come back."
Dear Son has a wonderful mom. May you, "Dear Mom" and your Dear Son find laughter and joy, even though any hard times ahead.
I have enjoyed your blog. All the best to you and Dear Son.
Best of luck to both of you. I totally understand where your priorities have to lie. At the same time, if you have the desire to post again sometime in the future, do it! You don't have to make this a daily/weekly/monthly responsibility. But keep it there as an outlet for yourself when you need it. I've had to cut my posting down dramatically for personal reasons as well, but I write when I can because I enjoy it so much.
You will be missed...
You and Dear Son will be in my prayers as always. Take care!
We will miss you.I wish you both all the best. I have learned so much from you.
Dream Mom,
I feel as if I'm losing one of my dearest friends, and I can imagine that you must feel the same in discontinuing your blog.
I completely understand your reasons why, but I will miss you so much. So often, you speak the words of my heart, and I know that the world is a better place because you and your Dear Son are both in it.
Sammy's mom
Thank you for sharing your story online. When it is useful and possible for you to blog again please do. Your spirit, strength, writing talent, and love for your Dear Son shine here.
I will miss your blog and will think of you and Dear Son often.
the best to you,
Liz
I can understand your need to devote your time to Dear Son and yourself. Although, I do hope you will keep your blog site. I would love to hear from you, whenever you feel like it, just to know how you and Dear Son are doing. My thoughts and prayers are with you both...
Please take care. I will miss reading your blog -- but fully understand the need to stop. You and DS will be in my thoughts.
Thank you all for your nice comments.
Cathy-Yes, I will leave the blog up for now.
I'm one of those anonymous readers that has come to greatly appreciate and admire you. I just wanted you to know that you have changed how I view my life, parenting and the disabled. Although we've never met, your generosity and this 'blogworld' have allowed me--and I suspect all your readers--some wonderful insights. I'll keep praying for you and your handsome son. Laura
You and Dear Son will continue to be in my prayers. God Bless You both!!
All the best to you and Dear Son. We'll be thinking of you.
I never commented, but I read. I always read.
Thankyou for your courage, thankyou for being brave enough and wonderful enough to share your stories with a sea of facelesss strangers. Your posts will be missed.
I wish both you and Dear Son all the best in the future ♥
I'll miss you too.
We'll miss you, but we understand. Being Mom to Dear Son is the most important of the many important things you do. Peace, dear lady, and my prayers for you and DS will continue...always.
I'll miss you, and you and Dear Son will continue to be in my prayers.
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