que sera sera

Whatever will be, will be....

How I have learned to live that way~!

Today I am going to share more health stuff. I no longer read much about my "issues". I have a forum I visit from time to time but for the most part I try hard to pretend there is nothing going on.

Every now and then I need to talk to someone so I chose you this time (you who still check in). I am past frustrated, I am numb. I can only live as if nothing is wrong until my leg or my body collapses. A little over a week ago I was told by my neurologist that he and my other neurologist (the MS specialist) feel that I have primary lateral sclerosis. Yes, I should have capitalized that but why give it any more importance?

In a way this would be better than the other stuff. However, there is no cure. Progression can be slow or fast and basically what happens is that you lose your ability to move your limbs adequately. Eventually it can affect your mouth. I won't bore you with my own physical challenges but I will say that it is already affecting me from head to toe and from time to time I have parkinson like symptoms.

My cardiologist asked if I would consider going to the Cleveland Clinic. There are a lot of them but this one is actually in Cleveland, OH. So if my insurance will pay, that is where I will go. He (cardiologist) also has me on another med and says eventually I will need even more. I have autonomic dysfunction which typically accompanies ALS (Lou Gehrigs disease) and ALS and PLS are both motor neuron diseases. As long as there is little pain and I can function "enough" then I am happy! And if that changes, I will still be happy! Happiness is a choice and I chose it!!

My life is good. I am so happy to have my wonderful children, friends and a flexible schedule. Money is very tight, sometimes I wonder how I will pay the bills but all I can do is turn it over to God and work hard. Balancing parenting, work and my own needs (and limitations) is a challenge at times but I have such great kids (yes, I am bragging) that it makes it much easier!!!

Thank you so much for visiting!

"Aerodynamically the bumblebee shouldn't be able to fly, but the bumblebee doesn't know that so it goes on flying anyway."– Mary Kay Ash

tree climbing should be an olympic activity

Life changes so quickly. There is loss and there is gain and there is a gray area in between that I have the most trouble with. Lately I have chosen to view it as a cloud...not really gray...just a cloudy sky with a lot of sun and an unpredictable forecast.

I haven't been here lately. I am only posting now because I noticed that there are still actually visitors!!! I have started a blog about my growth as a Christian. I plan to continue this blog as a Mother but no longer as a Wife. Yes, we are divorced. Life changes so quickly.

Have you ever noticed how different perspectives can be? For example, take a tree. I loved climbing trees as a kid. My favorite was a tree that I could not even give you a name for but it was a lot stronger than it looked and my favorite branch was the most dangerous and yet strongest one...it went ACROSS A ROAD....Yes...I climbed across a branch that went over cars and I SAT there!!! It was rare but sometimes I invited a friend or cousin to join me but it was mostly a solitude activity, one that I preferred to keep that way.

That tree felt and looked so strong from that perspective. I truly felt invinicible. I had tree climbing down to an absolute art and knew so well which were reliable and which were not. BUT when I went for a walk (for example, to see my Grandmother), that tree did NOT look strong. It looked so helpless and weak, yet it held me up------ and others, too. I hope that I can be that tree.

Pretty much sums up how I am feeling today. Humans are merely humans and only God is God...He is God and I am not...I think that is EXACTLY why we turn to God as humans...we know we are NOT invincible...we know we are weak....we only have a certain level of strength we can attain....

Life is crazy.

I haven't posted in so long!!!

Here is why...

1. I am going through a major life change (WE are, not just me) that I will share soon.

2. I have heart problems again. Nothing major, just have to take a beta blocker twice a day to keep from passing out and because they had to do a sternum rub on me in the hospital a couple of weeks ago and those are PAINFUL (so I want to avoid that)...It was the only way they could wake me up when I passed out. It's really bizarre to open your eyes and find someone sitting on top of you digging into your chest with their knuckle...

3. I am on a spiritual quest.

4. Blogging has not been appealing.

So there I am. If you feel motivated to pray, thank you.

jennifer

There is a little girl, very little. She is actually only 6 lbs and 12 ounces and she has us all wrapped around that teeny little pinky. She is BEAUTIFUL. Even the nurses say she looks like a baby doll. And sweet!!! She didn't even cry when I changed her very, very messy diaper! She just looked at me with one eye, like "what are you doing??" or "wow! that was a load off!" haha.



Anyway, she has wisps of blonde hair on top of her head with a little dark mullet in the back (which her mommy has already contemplated a haircut on) and dark blue eyes, perfectly symmetrical features and a little mouth that can change into adorable little shapes.

She loves to suck on her little fists and fingers and gets quite mad when she can't figure out where the food is.

She reminds me so much of her mommy. She's strong like her mommy (who walked at nine months) and she is sweet like her mommy.

Oh and she also has a wonderful daddy who is very supportive of the wonderful mommy. Can you tell I am proud of all three of them?

I am the Mimi. Mimi means proud grandmother in denial of her age ---or so I think ;)



Pictured: Top left: Proud parents with precious baby Marleigh

Right: Marleigh Elizabeth at just a few hours post birth..very alert and very content

Bottom-Two of the grandparents :Emily's Dad Doug and me watching Emily :) and eagerly anticipated Marleigh's birth.

More Marleigh pictures coming soon!

Today was one of those rainy and dreary days. Tomorrow I have more tests. This time it is in regards to memory issues. Hmmmmm ....just because I left my keys in the door two times...well, and I lost my cell phone..oh yes, and because I keep asking the same questions only to be told that they were answered but I didn't remember. I kept my nephew for a few hours last week and at 21 lbs and only 1 year old, he is quite heavy. My left arm couldn't hang and it felt so awkward on the right side. My husband said "this is so unlike you". He knows how completely frustrated I am. That was Friday. On Saturday my left leg was back to aching. I am afraid I am going to have to be honest with my sister-in-law and tell her I cannot handle it. I worked hard on getting him to sleep only for her to call and tell me to wake him up fifteen minutes later so that she could get him in bed at his usual bedtime of 6ish (?). To each his own but I just cannot handle him physically right now...although he is adorable.

On the sunny side of things, I enjoy being home so much! I've accomplished organizing a few rooms and I have a lot more to go! But the best part of the whole thing is being with the kids. John is playing the guitar he received for Christmas and doing a great job and so is Josh on his keyboard. I am amazed and overjoyed at the time they spend on it and am looking for teachers for both of them.

Randy and I are leading a Venturing Crew (through the scout troop) for teen girls and guys. So far Liz is the only girl but last night we met and planned some future activities. They are funny and sweet kids and I enjoy watching them interact.

Rachel's schoolwork is coming along so well. Some days she doesn't want to do it but just a few minutes into it she gets so excited and enjoys learning! One day she told me that the reason she loves me being her teacher is because I think of fun things and that I keep it from being boring by thinking of fun things :) <3 That did my heart a lot of good.

Liz has been working ahead on her lessons. We move to another grade level on Monday so she'll begin Algebra.

I also love when I get to see Lindsey, Emily and Mark which isn't often enough but never will be, I'm sure. I am glad they are living fulfilling lives and I do see them every other week at least.

On a sadder note this Saturday is one year since losing the baby and my tube. I guess I'll never forget February 21st. I think this year I WILL plant a tree in memory of our angel.

Thank you for continuing to stop by!

This past week has been insane. My Daddy (yes, he is still my Daddy as my brother likes to point at, even though I am in my FORTIES)....well, he has cancer. Kidney cancer.

It was a bad experience all the way around. The doctor was a jerk. We had been waiting for two days to find out what was going on. Dad was inpatient for pain and we knew there was a lesion and cysts on the kidneys and cysts on the liver but Dr. Ojerk, one of the partners, had to be paged. Mom and I had just left. 11:00 at night (!) when my dad was ALL ALONE (!), Dr. Ojerk came in and told him that they would have to take the cancerous kidney out!!!!!

I am still in shock and I think it's a good thing because when I start feeling the shock wear off I have a huge lump in my throat.

There will be no not me's today but I have a ton for next week....like no way, not me, I would never tell all of the nurses AND EVERYONE ELSE IN THE HOSPITAL who would listen, how mad I was at Dr. Ojerk.

We are going for a second opinion at a teaching hospital on February 26th.

Please stop by and visit this family......

This family's story has really pulled at my heart strings. Please go by and read what has happened and if you can spare a few minutes, please post to the "Extreme Home Makeover" request by their friend.

http://aplacecalledsimplicity.blogspot.com/

I have very few heroes in life but one contacted me the other day, me personally and made a request. HELEN BALDWIN contacted me about my blog the other day and I want to pass along a request to sign a very important petition to help cure Spinal Muscular Atrophy-the number one killer of children under the age of 2!!! Before my nephew was diagnosed I had never even heard of it.

I've been such a bad blogger! I have ideas in my head but they slip through the crevices and then I get busy and don't post.

I just want to save some things that have happened. Elizabeth and I are starting a new tradition of a once a month "escape". I won't go into details but I'm sure most of you can figure out what happens once a month and why it might be good to escape----good for everyone :) We do a little shopping, a lot of talking and we eat something yummy.

John and Josh are preparing to begin their Eagle project. I am so proud!!! And Randy and I are going to be the leaders of a Venture Crew which is for teens. We'll hike (I will hopefully be able to hike some), camp, and teach/learn life skills. It's part of boy scouts but it is for girls and boys!

Lindsey is taking a lot of classes and hopes to graduate in May! She is planning to go straight to grad school! There again---I am so proud!!

Emily is at the uncomfortable part of her pregnancy with my granddaughter and I am so looking forward to holding that baby girl!!!! Liz is making her a blanket and I am cross stitching a picture for her. Emily is still working at present.

Oh how I miss Lindsey, Emily and Mark!!! I try to see them once a week. Lindsey drives right by here so she stops from time to time. I get Mark to come home by offering him driving practice!

Cute things Rachel said this week: "Mommy, here is your sew" as she hands me a cross stitch thread :)

She also set the table last night and when we wondered why we each had two forks she informed us that it was in case we dropped one on the floor, so we wouldn't have to get another :)

Thanks for stopping by!

A Brutal Killer of Children - Spinal Muscular Atrophy Type I

My nephew, David, was diagnosed with Spinal Muscular Atrophy Type I (also known as Werdnig-Hoffmann disease) at the age of four months and passed away at nine and a half months. Most everyone who knows me knows that. Tonight I want to attempt to raise awareness by sharing about it.

SMA basically causes muscles to waste away and robs people of their ability to move and eventually, breathe. Their minds are just as strong as ever, but their bodies fail. THERE IS NO CURE. It is best defined by going to this site: http://www.mda.org/publications/fa-sma-qa.html

Tonight I want to pay tribute to another little boy who passed away yesterday of SMA. Here is a link to his caring bridge page:

http://www.caringbridge.org/visit/corneliusbrewer

Please think of and pray for this family as they grieve. Please ask that they are enveloped with a peace that passes all understanding.

Not Me Monday Fun!

More fun sharing things I would NOT do! Right?!

I did not drag my husband (making him drive) to six Targets in a two day period in several separate cities looking for tablecloths on clearance for $2.71. I did not sew aforementioned tablecloths into curtains for my dining room, front and back foyers (side panels to doors), and two living rooms! I am not that cheap!

I certainly did not lose track of how many tablecloths I purchased and am now making throw pillows, too!

I did not feel sad about Christmas being over and have postponed putting away all of the signs of Christmas until today---except this blog of course...not?

I did NOT have a super humongous margarita on New Year's eve!

And I did NOT check on Stellan and another sweet baby several times this week, waiting for blog updates and worrying!