A tender moment...to learn from

As if the first year of motherhood doesn't have enough precious moments to go around, I recently experienced one of the sweetest mother-daughter moments to date. And the best part? I wasn't expecting it!

Deirdre, as I've said before, is a fabulous sleeper. She's just over 9 months, and knock on very hard, solid wood, very rarely wakes up in the middle of the night. I think it's been at least 3 months since she's even made a peep, and probably another 3 months before that when I can remember any sort of middle-of-the-night rousing. Apparently, she's her mother's daughter - and seems to need almost 12 hours of sleep each night - and we love her for it.

But just recently, she had a fitful night of sleep. She woke up at 1:30am and again an hour later. I then heard her around 4am. She wasn't crying hard each time, just fussing - and wasn't awake more than 5-10 minutes before she went back to sleep. I didn't even have a chance to go into her room. However, when she woke up again at 5am crying harder this time...I decided to go in. I figured she was teething, and perhaps could use a little tender loving care (aka Tylenol) to help ease her pain. I went in, scooped her up in my arms, and held her close. I realized that she was significantly younger the last time I'd done that in the middle of the night...almost too young to understand the concept of consolation. Sure, in the past, she's appreciated her mommy's loving touch or a big hug from daddy - but bottom line, she had basic needs (hungry, poopy diaper, etc.) that needed to be fulfilled, and it was only after meeting those needs that she was consoled.

However...she's older and wiser now...and when I went in the other morning, and hugged her tight, she hugged me right back. I almost melted. She just kept hugging and hugging, and every 30 seconds or so, she'd release her grip, check to make sure it was really me, and then go back to hugging. She was comforted enough to return to bed within just a few minutes, and while I wanted those moments to last a lifetime, I'll never forget the feeling I had as we held each other tight. It was that poignant embrace that made me realize that I, too, have come to understand the value of accepting the consolation (and assistance) that others have to offer.

For years, I thought I was supposed to fight my disease alone - that being independent and self-sufficient made me a stronger, more resilient warrior. But come to find out, that's not the case. I devote several chapters in my book to this subject - even naming one of the chapters "Asking for and Accepting Help." I realized that asking for help was only 1/2 the battle. You have to willingly accept that loving embrace, that helping hand, or that shoulder to cry on. It took me far too long to involve others in my quest for wellness...just another reason why I wrote the book. So you wouldn't make the same mistake I did!

Here's an excerpt from the book on the subject. Enjoy!

It’s difficult for me to imagine my struggle with lupus without the supportive, encouraging, caring people I had around me. I was completely enveloped by friends and family willing to do anything in their power to make me well. Their compassion and attentiveness played a major role in my recovery. I know my healing process wouldn’t have come as easily or as quickly without that outpouring.

The support I received was truly amazing. My husband and sister physically and mentally helped me get through each and every day. My parents and in-laws stayed in constant contact, assuring me that Johnny and I could count on them for anything. My co-workers were accommodating and understanding, making it easy for me to float in and out of work as needed. Friends cleaned my house, cooked us meals, and ran errands. They sent cards, care packages, and inspirational books. My priest sent vials of holy water from around the world, as did a perfect stranger who had heard from my Dad that I was in need of extra prayers. Family, friends and more strangers collectively donated over $24,000 to the Arthritis Foundation in honor of a marathon my family and I walked in Dublin, Ireland. Included in almost every donation was a letter filled with hope and encouragement. I am blessed to have received such kindness and know it helped restore me to the healthful life I have today.

Perhaps you’re just as lucky to have a supportive network around you, or maybe those close to you are willing to give, but you’re finding it difficult to receive. I sheepishly admit that, from time to time, the attention I received was overwhelming, and I didn’t always know how to accept the goodwill. I wasn’t used to depending on other people, and the feeling that I was incapable of taking care of myself wasn’t a comfortable one.

From time to time, you may need to remind yourself just how beneficial and empowering it can be to engage others in your struggle with lupus. Here are just two [of the three] reasons why embracing the help of others is a good idea:


The better you are at communicating your needs to others, the more likely you are to get the help you need. And whether it’s physical assistance or mental encouragement, which of us doesn’t benefit from a helping hand now and again? You have lupus, which tends to leave you feeling depleted, isolated and rundown. Let yourself experience the boost of energy and the restoration of hope that comes from letting someone else help you. You’ll find strength in knowing that others care and be reminded of the fact that you’re not alone in your fight with lupus. There are people knocking down your door to help you; your job is to let them in.

Physical support

Someone opening a door, running your errands, or relieving you of a chore.

Perhaps it’s against your nature to accept help doing things, such as bagging your groceries at the supermarket. Realize that sharing your burden is not a reflection of your ability (or inability) as a human being. In fact, accepting help is a sign that you’re a mature adult capable of knowing your body’s limitations. Instead of berating yourself for “shirking” your responsibilities, rejoice in the fact that you are smart enough to prioritize and fortunate enough to be able to delegate those duties as necessary. Allowing someone to clean your home may give you the extra time (and energy) needed to share story time with your kids. Doling out tasks at work might let you contribute at the office in other ways that were never possible with your heavier workload. Lightening your physical burdens will actually give you the rest and relaxation you need in order to recoup lost moments in other parts of your life. In fact, this is such an important step along the path to living well that the next chapter is devoted entirely to asking for and accepting physical assistance.

Emotional support
A friend sending a card, coming by to chat, or sharing an empathetic,
personal experience.

The emotional support you receive from those who call, send notes, or visit is invaluable. Reading a single email from a friend who just wanted to let you know she was thinking of you may be enough to get you through the rest of that day. Don’t think you have to face life’s most overwhelming obstacles alone. Instead, accept the comfort and consolation that others have to offer, knowing that it’s making you a stronger, more capable warrior every step of the way.


Letting someone help you enables you to, in turn, help someone else. When I first started attending my lupus group meetings, I did so because I needed advice and guidance from people who knew what I was going through. Over time, their wisdom and insight enabled me to become a healthier, happier, more balanced individual. Today, I want to share that experience with others so they, too, can benefit from the assistance I received years ago. I go to my meetings today, not desperate for help, but ready to help others in their time of need. The learning process hasn’t ended; it’s just been enhanced by the ability to share and discuss my own experiences with others, in an effort to improve life with lupus.

Perhaps your self-esteem has been bankrupt and your sense of purpose lost. You may think that giving in to someone else’s help will only make you feel worse, more helpless and less dignified. Try looking at it from an entirely different angle. By allowing someone to give you the necessary boost to make it through the day, you’re equipping yourself to help someone else down the road. Good deeds are contagious. Why not let the string of goodwill begin with you? By opening yourself up to the assistance of another, you may be jumpstarting a positive chain of events that leaves you more fulfilled and rewarded than ever before.


Melanie said…
Hi there,
I was diagnosed with lupus in Sept of last year. One of my biggest fears for the future is not being able to start a family. While I am only 21 ( in 2 weeks), it is still something that is in the back of my mind. I have read your blog for a while now and I am commenting on this post because I was wondering how you went about asking for support. I have trouble getting help from family and friends when I need it. They seem to be of the mind that I am young and should be able to do whatever needs to be done. For example, I have trouble going out in the sun and I did not want to take my cousin to run errands because it would require me to be in my car for a while in the sun. My family did not listen to me and made it seem like I was just making excuses. I live with my father, however, and he is much more supportive. I was wondering if you have any tips on how to explain limitations to friends and family without seeming like a complainer.
Thanks so much!
Sara Gorman said…
Thanks for commenting! Figuring out how to communicate with others and explain your symptoms, limitations, etc. to those around you can be so tricky! I devote an entire chapter to the subject in my book - although an entire book could be written on the subject, I'm sure! I certainly don't have it all figured out - but I do have some thoughts – three things that helped me when I was struggling to reach common ground with those close to me.

1 - Cite examples: You may have to remind your family of what happens when you expose yourself to the sun - Do you run a fever? Do your joints ache? Do you get a rash? Your physical ailments serve as a constant reminder to you that you can’t do something, but your family members don’t have that built-in cue. They may need a recap from time to time. When someone asks you to do something beyond your ability, take the opportunity to re-educate him or her on your actual limitations. Lupus is hard to understand (and explain) – but facts about what physically happens when you ‘overdo’ are hard to dispute!

2 - Take the lead: I would imagine that those around you are having trouble adjusting to life with a chronic illness, even though you’re the one with the illness! Believe it or not, you may adapt to your limitations before others do. They may be sorting out exactly how they’re supposed to act around you – thinking that ignoring it, acting like it’s not that big of a deal, or downplaying the symptoms might be the best way to “help” you cope. The best thing way to help them help you is to take the lead. Show them exactly how they can help – explain that you need their support, tell them that it really helps when they accept that you can’t do the same things that you used to be able to do. If citing your Dad is a good example – do that.

3 – Seek out support: Your family will come around , but in the meantime,– you may need to surround yourself with more supportive people like your Dad for a bit. Perhaps there’s a support group in your area – talking with others with lupus about these kinds of issues can be a huge help. Or you can seek out an online support group – I’d be happy to pass on a few suggestions if you’re interested. Never hesitate to stop by again. I’m always happy to talk lupus!!!
Melanie said…
Thank you so much for responding! I have recently entered into a flare so I am going to use your suggestions to have a sit down with my family. It also so happens that a lot of them are coming to visit next week, so I guess if I have to find something positive in flaring right now it is that it will be a good way to enter into the subject.

P.S. Your book is on my list of next to buy once my bank account stops depressing me so much. :)

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