I have been offline for a bit now and unsure about how to talk about it.
Things have been busy around here.
About ten days ago my dear daughter, the mother of my three grandchildren, was diagnosed with a very rare neurological disease with an indeterminate recovery and the potential of some progression. This has affected her mobility and energy levels drastically. Her medical care has been outstanding, no issues there, but this has been a big event in our lives.
This is tough, but then again so are we. I have confidence in that, in her care team, in her resilience, in this family's ability to deal, and in life.
The fact too is that one of the benefits of being my age is that by this point you sort of know things happen and that you can all get through it.
My role has been the grandmother stuff, taking care of the kids, making food, whatever I can see needs to be done and I can do. And I am far from the only one.
My niece said it best. My daughter has an army behind her.
In those times when I was home alone in the house with the kids waiting to hear news from some test I found myself going down to my sewing room and refolding my fabric. It was very soothing. It sort of reminded me of who I was, who we are. It reminded me of where I have come from to this day, of the clothes I made for her when she was a little girl, of an ordinary life that doesn't seem that close to us right now.
Sewing has also given me something to do when there was nothing I could do.
I made her a lucky shirt with bright flowers on it to wear to an important MRI.
When she said that new clothes are always cheer anyone up I started sewing.
I made a soft Adeline dress yesterday and have another one cut out to go. I may loosen the hem on this one so it is a little less restrictive. I have a couple of pairs of Jalie pull-on pants cut out. And another lucky shirt. When she can my daughter says she will have pictures taken for the blog. But right now I am sewing away on a little island in front of my machines at something I have always done my whole life.
I feel we are battening down the hatches around here right now seeing where this thing goes, but that we will adapt and be fine. Once we have an idea what the new normal looks like we will live it. Of those who have this particular condition many, of not most, have it much worse at onset. We are hopeful for the rest of our news to be good news and for Katrina to be one of the ones who experience considerable recovery.
So that's my status report, down folks, but most definitely not out.
Now off to get some kids off to school.
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About me
- Barbara
- I am a mother, a grandmother, and a teacher. But whatever happens in my life, I keep sewing. I have worked as a political communicator and now as a teacher in my formal life. I have also written extensively on sewing. I have been a frequent contributor and contributing editor of Threads magazine and the Australian magazine Dressmaking with Stitches. My book Sew.. the garment-making book of knowledge was published in May 2018 and is available for pre-order from Amazon
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63 comments:
Having gone through this kind of thing a number of times recently with my family, I feel your pain and think you have evidenced your resilience which I'm sure has been passed on. But doesn't it just suck!
Best wishes to you and your husband, your daughter, and your grandchildren
Oh Barbara I'm so sorry to hear this. But yay for the power of sewing to make you (and her) feel a little better.
And as an almost 12 year veteran of an illness which took most of my energy and considerable slabs of my mobility, brain power and memory away, I can tell you that you're right that whatever the future holds, you'll all be OK.
I was a single mum of 16 year old twins when I got sick, and we got through it. Life is different now that I'm living in the slow lane but it's still equally enjoyable.
Hugs to you all,
Mim
Barb - I'm sorry to hear this challenging news for your family. You are right to say that you are "down but not out". I'm so glad that your daughter has her personal support army and you must feel "full" to be able to be there for her. Best wishes to all of you.
I wish the best for your daghter and your whole famil
Sending hugs and prayers.
It is good to be the age we are, and you are so right about learning how to deal with the hard stuff! I so feel for you and your family. Just know you aren't alone, and that army is a strong one! Well wishes and hugs to all.
Joy Z.
Your daughter, your family and you will be in my thoughts and prayers!
Your daughter and your family will be in my prayers.
I'm so sorry to hear this. Wishing your daughter all the best. I'm sure she appreciates all of your support and all the lucky shirts will be a great comfort to her and give her strength
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I am praying for strength, courage and healing for you and your family!
I can't imagine. Wishing the best for your daughter and your family.
Staying positive and encouraged goes a long way. Hugs.
Love & prayers to all of you
Sending all good wishes to you all and hopes for positive prognosis for your dear daughter. A powerful army of friends and family is a wonderful thing. Much love xxxx
Best wishes to you, your daughter and all your family. Hugs xx
Wishing all of you the best.
So sorry to hear of your family difficulties - having an army of support sounds like a wonderful thing, as does a lucky shirt.
Thank you for allowing us to add our positive thoughts.
ceci
I'm so sorry! I will definitely be thinking of her. Brain issues are so hard... my son had a concussion when he was younger, and developed narcolepsy afterwards - no cure, just lifelong medication at this point. My daughter has autism. I KNOW you know that feeling that I would give anything to help them get well. (HUGS)
God bless and keep your daughter and family. You have a great attitude and I am sure that helps the entire family.
Sending positive prayers for all good things...
Hi Barb,
I've been lurking here for a long time and keeping track of your doings, your sewing skills, your humour--it's taken your shocking news to get me commenting.
Yes, Katrina has an army behind her, and I've always had tremendous faith in the Brown militia, founded in your father's file folder to help me organize my wedding, you sewing my wedding dress with me, and (later) your mother leaping into my house where I was a rapidly collapsing new mother and saying "Have no fear, your fairy godmother is here!"
It's in the genes, and Katrina has good ones.
How can everything NOT turn out well?
Thinking of you...............
I enjoy and appreciate your blog, your view on life, all of it. You don’t know me, but please know that I and no doubt countless anonymous others are wishing and hoping (some of them probably praying) for your whole family to get through this with the least possible disruption and suffering to all.
Oh my, I'm sorry to hear this.
But I must admit that Kate Le M's outline of the Brown militia's capabilities gives me hope that you will come through it with flags flying.
Thank you for sharing this bit of your life with me (us, the sewing community). Hugs, prayers and thoughts for your and your entire family as well as healing energy for your daughter. I found your blog recently and I've so enjoyed your sewing stories and have laughed out loud at your musings. Blessings to you.
Thank you for ALL your posts, Barbara. I did not get my usual chuckles from your personal update today. Instead it served to dig me out of the Lurkdom of the WWW to send love, concern, good wishes, hope and prayers to you, your precious daughter and her army and your wonderful family. When you are able to and as you need to, please update your internet army. Karen
Sending positive thoughts and energy to your daughter and the entire family. Your daughter is blessed to have you in her life.
Sincerely,
Your new fan in Cali
I'm so sorry to hear of this difficult news. And yes, strong people and strong families will carry on, with all the love and practical care that years of experience teach. Wishing all of you all the light and grace that is possible.
Sending good thoughts, prayers and pixie dust to your daughter and her entire army! I have faith in every one of you!
And sending thanks to you for sharing your thoughts, ideas, knowledge, humour and real life with us. I discovered your blog about five years ago. Although I rarely comment, your blog has helped me through some difficult health issues and reminded me that sewing can be a joy as well as a necessity.
Another body that does not meet garment manufacturers' specifications,
Taja
One more in the army that is pulling for you all. I'm so sorry to hear that your daughter and your family are having to deal with this. Hugs to all. You are in my thoughts and prayers.
Barbara, I’m a long time fan and have so enjoyed your sewing knowledge and the progress of Miss Daisy. As a Mother Of 2 daughters, there are no words. Heartfelt wishes for a positive outcome from North Carolina.
Sending hugs and prayers.
Sending love and endurance your family’s way.
So sorry to hear your shocking news,thinking of you and your family, stay strong. I too am ashamed that although I have read and loved your blog for years, I have never commented before, your wit and wisdom have lifted me many times. So stay positive and know that me and your "internet army" are Wishing you and your family all the very best.
I’ll be praffor your precious Katrina, yiou and all of your family. How blessed she is to have you for a mom.
I have no doubt that your daughter will make the best of her 'new norm' if she has half the attitude that you do! People are all too willing to do the woe is me part, not so much the lets make the best of it one and you take the biscuit as far as I am concerned for your willingness to do this. My heart goes out to you all and I will be sending cyber hugs across the ocean to you all, you are an excellent role model for sewing and life in general, so I hope that things calm down soon and that the army of support that she has settles into the new routine. Being Scottish I have an inkling of what may be going on, our genes seem to be susceptible to a particular neurological issue I am afraid. All my best wishes and love, Sheila xx
You have an army online too, although all we can do is send our love but maybe knowing that we are here will help.
So very sorry to hear this news. You write very beautifully about your daughter and your family. I wish your family and your daughter all the very best.
Life can send us curve balls when we least expect it. As you say you will get through it together. I can only add my best wishes and positive thoughts for a good outcome.
Love and prayers to all of you. I’m glad you have your sewing. My knitting and sewing have seen me through some challenging times.
Sending lots of positive thoughts and prayers your way.
Very sad to hear of this. Just know that another army has assembled to encircle you with loving prayers, blessing you as you bless all of us, your grateful readers. I hold your daughter in my heart, and all of you as well. I'll be thinking of you often.
Oh Barb. Thinking of all of you, hugs and prayers.
I'm so sorry, Barb. You are a resilient woman and I'm sure your daughter has inherited that from you. My thoughts are with you, your daughter and family.
I send my best wishes to your daughter and all the family, I know from first hand experience how hard these events are on the person going through them and especially on family. I also got a rare neurological disease (TM) almost 25 years ago and although it has changed my life and those close to me, there have been many silver linings and after a period of time was able to sew again.
Kay my daughter has TM with a possibility tbd that her risk of later developing MS is higher. Sounds like you know what we are adjusting to.
Yes I do know what she and you are going through. I was also told at the beginning that I could go on to develop MS but it hasn't happened. I was also told I would never walk again but I am walking unaided so never give up hope. Progress can be slow and I guess everyone is different. I'm in New Zealand and at the time I got TM 1994 very little was known about the disease. I know how frightening this is to happen, often overnight with no prior warning and I wish you all the very best.
My thoughts are with you and your family. Best wishes for her recovery.
Sending good thoughts to you and your family. From knowing you only through your blog, I am confident she has the best kind of army to see this through with love and strength and laughter. I have cared for many patients with complex conditions and there is no greater medicine than the love and support of family.
So sorry to hear your news. In my experience a strong will and loving supportive family are the key ingredients for life well lived. Oh and sewing of course. Thinking of you and your family. All the best for a happy outcome.
All the best to you and your family.
We are willows. We bend. We don’t snap like the mighty oak! Your daughter and family go to the top of the prayer list. All the best dear friend
My daughter was diagnosed with MS several years ago. She had two small children. After the shock wore off we got down to business and did all the things one has to do. I am glad to report that the disease seems to be in a holding pattern, yes, she has symptoms but that's ok. More power to you and yours to find and work within your new normal.
Hi Barb
I am sorry to hear about your daughter's illness.keep sewing. Positive thinking may not cure everything. I choose to believe all things are possible.
Thanks for sharing
Josie Huber, RN
I can only add to the comments above, more of the same: love and healing now and into the future, as others have offered. I send gratitude for what you have shared previously, and humble thanks that you shared this now. I hope the support is helpful to all of you.
This post says it all. You blog and book helped me bring the joy back to my sewing.
I completely understand the urge to do something practical and useful to help everyone (including yourself) deal with such a life-altering diagnosis. Sending all my best thoughts to you and yours.
So very sorry to hear this. Offering best wishes to your family and prayers for healing.
I began sewing jeans for my daughter when she was diagnosed with an autoimmune illness (RA). She is much better now, and I'm still making her jeans. ☺️
What a blow, I'm so sorry this is happening to your family. Your attitude towards coping will help those around you I'm sure. Best of wishes to all.
Much love and healing thoughts to you and your family.
I too wish you and your family all the best of life. Thank you for your writings and thank you for inspiring me to sew.
Oh, Barbara, I just read this post. I have been very busy, but not with the kind of bad news your family is dealing with these days. I will send all positive thoughts to you and your daughter. I know you are tough, and I bet she is as well. You are wise to do what you can and see how this all evolves. One never knows, and it is always a mistake to think we do. Bless your house!
Thinking of you and your family. You are all tough!
I have only just 'met' you, through obtaining your fabulous book, but I already feel I know you and wish you, your daughter and your family the very best outcome. Whatever happens, I feel sure you will prevail and become accustomed to the 'new normal', whatever that might be.
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