Thank You

I want to thank everyone who has been praying for mom and I, as well as those who have sent good thoughts and kind words our way. Mom's eye's are itching terribly since the surgery and we don't know whether it is a reaction to the ointment we are using or just from the surgery itself. So far she is doing alright, although she isn't getting much sleep so that is wearing her out.

I am developing either the flu or a good sinus infection, or quite possibly both. That isn't such a surprise given the physical and emotional stress I have been under, but it doesn't make being the caregiver any easier. It will be weeks before mom can drive again, so I am it for now. Yesterday for her follow up appointment we only made it by the grace of God as I was so nauseous that I was holding a basin to get sick in the whole way there and back.

Please continue to keep us in your thoughts and prayers, it is the best medicine we can both receive and we truly appreciate it.

Prayers For Mom

I am writing tonight to ask you all to keep my mother and I in your thoughts and prayers tomorrow as she has surgery to correct a problem with the muscles around her eyes. She will be having the surgery in the afternoon and I will be caring for her at home after. It is always difficult when someone you love has surgery, and I have had such a bad time lately with my own health, that being the caregiver right now is particularly hard. Please send prayers and good thoughts our way and I will try to post either tomorrow or the next day and let you know how it all went.

My Sister-In-Law

This post came to my first thing this morning as I opened my eyes, but instead of writing right away, I waited, and I hope it won't suffer as a result of my laziness. Yesterday was my brother's 52nd birthday. Regular followers of my blog will know that we weren't sure he would live to see this day, so it was a joyous occasion. The short version is that last January (2008) my brother suffered a heart attack. He went straight to the hospital and was diagnosed immediately and had a stent put in. He was transferred to another facility where he developed A.R.D.S. (Acute Respiratory Distress Syndrome) and was in a coma and on full life support until the very end of April. After coming out of the coma he required intensive therapy at a rehab center. He was finally released for home just before Thanksgiving this past year. He still needs a walker, braces and has many challenges, but when we think of what could have happened, we realize how blessed we are just to have my brother still around.

This all got me to thinking about my sister in law. She is an intensely private person, preferring to keep it all to herself. She loves deeply and fully, but isn't the demonstrative type. My brother and she have two sons, the oldest of whom was in his senior year of high school when his dad fell ill, and is now in his first year of college. The youngest is in middle school. My sister in law is a teacher. She works as a substitute for teachers on leave, generally in the high school, although sometimes in the middle high level. During the entire 11 plus months this was all going on (not that it STILL isn't mind you!) she was working full time, taking care of the two boys, and driving over 2 hours each way in all kinds of weather to visit my brother every single day (even when he was comatose for 4months straight). Now we may disagree on somethings, but that takes an awful lot of sacrifice, drive, strength and love - I don't think anyone would disagree with that!

We have a weird relationship, she doesn't call often or even give us regular updates on my brother. But I have such respect for her despite that, because she loves my brother completely and she shows it with her actions towards him. I feel nothing short of awe towards her. I think I started thinking about her not only because of my brother's birthday, but because I was already seeing references to Valentines Day everywhere on TV and the web. I am an odd girl when it comes to Valentines Day, I really feel it is a greeting card holiday made up to make people spend money and feel badly about themselves. You want to see true love? Show me the spouse who gets up at 5am, gets the kids ready for school, herself ready for work (educating other people's kids for 8 hours!) and then drives two hours in the snow and ice on the Long Island Expressway to sit beside my brother's comatose body just so she can hold his hand and stroke his hair and whisper how much she loves and needs him. I'll take that any day over a box of chocolates or a dozen roses! And I know my brother, he'd have done the same thing for her. They don't have a dream marriage, in fact, they have had more than their share of problems, health, financial and otherwise - but they are still together and still in love. They embody what the vows mean.

So although we may not be as close as I'd like and we may not speak as often as I wish, this Valentine's Day I know who I will be thinking of. I want to dedicate this Valentine's Day to all the spouses everywhere (I'm talking about you - Annie, Terri, Brian and John!) who take care of their spouses each and every day, not because you HAVE to but because you want to, because you love them. YOU are the real valentine's, the romance stories and the white knights because you show that true love exists, not in the Hallmark way, but in the real world way. You slug it out in the trenches each day and come back for more. Thank you for loving my brother, my friends, your spouses and for showing me what is truly possible.

Another Lesson In Thankfulness

I am posting the following which I received in an e-mail, I have no idea who the author is, so if anyone knows, please get in touch so I can credit the right person!

Be thankful that you don't already have everything you desire.
If you did, what would there be to look forward to?

Be thankful when you don't know something,
for it gives you the opportunity to learn.

Be thankful for the difficult times.
During those times you grow.

Be thankful for your limitations,
because they give you opportunities for improvement.

Be thankful for each new challenge,
because it will build your strength and character.

Be thankful for your mistakes.
They will teach you valuable lessons.

Be thankful when you're tired and weary,
because it means you've made a difference.

It's easy to be thankful for the good things.

A life of rich fulfillment comes to those who

are also thankful for the setbacks.

Gratitude can turn a negative into a positive.

Find a way to be thankful for your troubles,

and they can become your blessings...

This is true for everyone, but especially important to remember when you battle a chronic illness. I know that I have learned so much through this journey that I might never have learned, and although I don't enjoy being ill, there are positive things that have come from it. I have met some wonderful people, both on-line and in "real" life. I have learned about talents and strengths I possess that I never knew I had. I have let go of perfectionism as my ideal.

I am heading into a challenging week. I have several doctors appointments, which have me worried. My mother has had continuing difficulties with her health since developing C-Diff back in August in the hospital. They are doing a colonoscopy on her on Thursday morning, so we have the prep to get through on Wednesday and then her test. I pray they can figure out what is wrong so she can get some relief. I have a new specialist on Friday for a possible problem with my kidneys. It never ends. So I need to re-read my own post and learn to take the challenges and change them into growing experiences! That doesn't mean I won't ask for your prayers in the meantime though. . .

True Gratitude!

One of my favorite things about blogging are the other incredible bloggers you meet. I participate in Wordless Wednesday and Photo Hunt Saturdays, and through these forums have met bloggers from every country and walk of life. One of my favorites is Terry, from the blog Notes From One Mom. We "met" through our comments on each others photos. Terry, having read my profile, shared with me that she is the caregiver to her husband, who has had a stroke, as well as a patient with a chronic illness herself. I love her writing and her upbeat, positive outlook on life. She had a post on her site about her husband that she had written that touched me so deeply, I asked her permission to share it on my blog. I think it is such a powerful expression of love and understanding, and it certainly made me realize that despite our illness, the ones who really know and love us, see the whole person--not the illness or disability. I hope you will find it as beautiful as I did, and perhaps you will be inspired to write to someone in your life who you are thankful for.

Without further ado, here is the entire post:


Thursday, November 6, 2008
Thursday Thirteen: My Husband, My Hero



This is the month when giving thanks is on our minds. Having almost lost my husband more than once in the past thirteen years, I am grateful for every single day that he is still with us. He is my hero and here are my top thirteen reasons why.

1. He is a survivor. He survived rheumatic fever as an infant, polio as a child, 3 heart attacks before he was 50 and a stroke before he was 60.

2. He doesn't know the meaning of "can't." In between his childhood ailments and his adult illnesses, he played baseball, hockey, college and professional football. He even ran the Marine Corp Marathon when he was 40.

3. He never, never gives up. No matter what life throws at him, he is always positive. His first words after his stroke were, "I love you." His next sentence, although it took 3 days to compose and several minutes and some coaching to voice, was, "It's going to be alright."

4. He is a funny man. He loves to make people laugh. Nowadays he doesn't tell the jokes but he will still appreciate and laugh at yours.

5. I came into his life as a package deal, complete with three sons. He has loved them, helped to raise them, disciplined them, guided them, supported them in the good times and not so good times, and has always, always been there for them.

6. He is driven. Probably a little too driven at times, but that determination is now what enables him to deal with his disabilities on a daily basis. It's what got him walking after his stroke. It's what got him out on the golf course again with a one-arm golf swing. It's what gets him going every single day.

7. He is a supporter to those around him, whether it be me, our children, friends or neighbors, he always encourages those around him to succeed.

8. Not a day goes by, probably not more than a couple of hours, that he doesn't tell me how much he loves me and appreciates me.

9. He is the designated dishwasher loader/unloader in the family. And if I ask him, he will also do floors :)

10. Since his stroke in 2004, he had tried unsuccessfully to read a book - until this summer when he read the New Testament. He worked at it every single day and was as excited as a child who had mastered riding his first bicycle when he finished.

11. He loves life. Although much different than it was or than he expected it would ever be, he is content.

12. He notices and appreciates the details. Coffee and freshly baked muffins, a drive around the island, a walk on the beach, he takes pleasure in the small things that others often take for granted.

13. Last, but not in any way the least, he loves the Lord. And he knows the Lord loves him.


Posted by One Mom at 1:02 AM 6 comments Links to this post
Labels: giving thanks, husband, stroke survivor, Thursday Thirteen

Illness And Moving And Caregiving. . .OH MY!!!

Hopefully someone else out there has the same silly sense of humor and gets the post title reference to "lions and tigers and bears, OH MY!!  I'm a little punchy with all that has been going on around here lately.

For starters, my mom has been ill for awhile.  The 2 weeks before I started this blog, she was hospitalized for 10 days.  Since I am the only caregiver for her,  it was a very stressful time for us both.  She is home now, but has developed another infection requiring us to make multiple doctors visits.  The antibiotic which she needs for her infection increases the chances of her C-Diff returning, so we have our fingers crossed that we don't begin that battle all over again!

In the midst of all this we are moving in 3 days!  I know, why make something simple when you can complicate it, right?!!  Seriously, this move will be a good thing for us if we live through it!  We have been in a very bad living situation for almost a year now, and it has affected our health and emotional well being, so once the stress of the actual move is over, it will be a definite benefit in our lives.  The problem  of course is, how to get to the better place without killing ourselves in the process.  Well, I must confess I am doing something I have NEVER done before, and I've moved a lot of times -- I've not only hired movers to move us, but to pack us as well and to help with unpacking.  True, money is very tight, and it certainly wasn't the cheapest option, but given the circumstances I realized that my responsibility is to my mother and to myself to give us the best chance of remaining as healthy as possible through all of this.  For me the answer was I needed help.  Unfortunately we don't have friends and family nearby who would be available to call on, so I did the next logical thing, I called on professionals.  I know I had a hard time accepting that I needed the help, and justifying the expense when we are so strapped, but when I realized what it would cost me physically to try to do everything on my own, I realized I was being proud and selfish.  That wasn't easy for me to admit.  It is still hard to admit I cannot do everything all the time, and this is after 30 years of living with chronic illness and having to learn to lose pieces of myself that I valued and defined myself by for so long.  But the reason I am writing this personal stuff in a public post, is that I know it is something that all of us, whether we are the sick person or the caregiver, go through.  I want to let you know that you aren't alone in feeling frustrated that you can't do all the things you would like to, or that you used to be able to.  But, that said, I also want you to know that you are learning new skills all the time and growing as a result. 

Learning to admit I need help, and especially learning to accept help when it was offered has been a huge blessing in my life, though I went into it kicking and screaming in the beginning.  Now I realize that it doesn't make me a failure to reach out when I need to, and it helps those around me to to do things that are really needed and meaningful, and that makes them feel good and needed.  Also, it has taught me that I don't have to do everything to be a good person (that terrible disease of perfectionism that lingered with me for so long!), that I am a good person just as I am.

Now the week wouldn't be complete if I didn't get ill as well!  Unfortunately I am pretty sick at the moment too.  But instead of pushing myself to keep going until I drop (like the old perfectionist would have!), I am taking care of myself and doing small things to make the move go more smoothly on both ends.  Instead of moving tons of things over before the move day by myself, I took some time to think about what we really need right away.  The first thing that popped into my mind was the bathroom -- LOL!!  So, I made sure I had a shower curtain and liner up, some toilet paper out, towels, hand soap and essentials like toothbrushes, toothpaste and the like.  This way we can just take out time getting the non-essential stuff set up as we both feel up to it.  In the meantime, we can shower and do all of the daily functions without trying to open a million boxes to find things.  All of this took less than hour between grabbing what we would need from the old place and setting it up in the new place.  But the peace I feel at knowing it is done is worth the effort.  And I still had time to nap, take medicine and care for mom!

Are there still things that need to be done, OH YES, but instead of panicking I am addressing each item and deciding what is really important and what I can realistically handle given how I am feeling and what mom is needing in terms of care.  It is a delicate balance.  I know that I will be freaked out when the movers pack us.  I am sure there will be things I forget, but I also know that I have truly tried to do what is best not only for myself, but for my mother, and in the end that's what really matters.  Everything else will get done in God's time, which is always the right time anyway!

So, if you have any good tips for moving without drama, or caring for another while you are feeling ill yourself, please feel free to share them with me.  I don't know it all and am always open to learning from others walking this path too.  And if you are still struggling with asking for, or accepting help, try to remember that you can be a blessing to another just by needing that help.  You aren't weak or bad, you are simply in need at the moment.  Of course it is important to pass that help along when you are feeling better, remember we all need to "pay it forward"!

Please be patient with me during the next few days.  I will be without internet service for 2 days next week, but as soon as I am back on-line I will be posting again and letting you know how it all went.  Before I sign off today I want to thank Lisa Copen of Rest Ministries for including one of my posts on Being a Good Friend Even When We Don't Feel Well as a Guest Blogger in the Invisible Illness Week Blog.  If it hadn't been for Lisa, and IIAW, this blog wouldn't exist.   I know how much the whole week meant to me personally and to many of you as well.  Thanks to everyone involved for helping so many of us in so many ways!