In Memory

Ethel Scivally

1/23/1913-10/19/2010

We buried my great grandmother this morning. Her death was not something to mourn. She lived 97 years and up until the last year or two she lived independently in her own home. I feel so blessed to have known her, loved her, and had her in my life for 33 years, I do not know too many people who at 33 years old still have a great grandmother, let alone 2. Although "Mother Scivally" (as she was known) is gone, I still have one more great grandmother alive who is also still living independently in her own home. Mother has left behind such a legacy! She was what a grandmother should be and although she will be missed my heart smiles to know that she is in heaven with her husband, son, grandson, and many others who departed before her. She married just prior to the Great Depression and she knew what it meant to struggle and sacrifice. She raised 4 successful sons and endured the death of an infant son. She was a farmer and rancher all her life and it was nothing to see her at 90 years old out in the pasture working cattle. She loved to play jokes, play in the creek, fish, and garden but ablove all she loved the Lord. The only difficult thing about her death has been watching my grandfather who is in ill health himself cry and look like a little boy because I guess no matter how old you get it is never easy to lose your mother. One of my great grandmother's son's, Uncle Don, wrote a lovely poem about her as he watched her deteriorate over the past year. I think it is such a fitting tribute.

Today I sat be mother's bedside

She is so frail and weak

It seems like only yesterday

That her life was at its peak.

We would work in the field together

My brothers, mother, dad, and me

The time we worked together

Was how life was supposed to be.

Mom would work until eleven

Her time was stretched so thin

She would prepare a meal for hungry boys

Then yell a piercing scream to call the family in.

Married just before the depression

Mom and Dad struggled to get ahead

Their tales of working sun to sun

Just to keep the family fed.

There was fierce determination

A better life to provide

And the fact of her success

I now look back on with pride.

Life was more than work

She knew how to have some fun

From playing in the creek with kids

And showing how snowball fights were done.

Through the years of joy and heartache

She has lived a Godly life

And she serves as a good example

Of mother, friend, and wife.

Memories are our vessel

To turn back the hands of time

As I remember my childhood

When she was in her prime.

Now I'm looking forward

To a home almost complete

When life here is finished

And we stand at Jesus' feet.

In my mind to see the family

Complete as it used to be

Health problems all behind us

For God has set us free.

Yes, today there is a sadness

And a teardrop in my eye

As I watch mother's failing body

Her little boy will cry.

But there's victory in the morning

And the sun will always shine

As I hear the Master calling to the family

"Children, come and dine."

Don Scivally

Patching and Testing

Today was Anna's opthamology appointment. The one thing I really did not want to do was patch Anna's eye. Guess what we are doing? Yep, patching Anna's eye. It isn't near as bad as I expected though. It is only for 90 minutes a day everyday for 2 months. We go back at the end of the 2 months and if it is better then awesome, problem solved. If not then she will need eye surgery to fix the problem. I am betting on the patches working for many reasons. Number 1, I do not want her to have to have surgery. Number 2, 2 months down the road and then needing surgery would put us into January when our deductibles and out of pocket for our insurance start over and I would love to say the money doesn't matter but sometimes it is hard to come up with it so in that respect it does matter. We always seem to find a way to make it work but it is difficult. This year we have already met our total out of pocket with Anna so everything except copay is covered at 100% right now. (This is good news since she has the upcoming inpatient stay for the EEG and MRI.) Number 3, the thought of eye surgery makes me quite queasy and I am not sure I could care for her eye. ( I realize how selfish this sounds and probably is but it is the honest truth.) So I am praying the patches work! I put the first one on (well actually it took Carly and I both to hold her down) and she screamed and cried for about 10-15 minutes saying "NO, not like it!" but after that she was over it and is tolerating it just fine now. They said if the child sees the parent is not going to give in they usually just deal with it. They were right.

Now on to the next matter. If you have done any reading of this blog you quickly realize nothing is ever "normal" for us. Kenneth has severe dyslexia. When we married he could barely read and his spelling was and still is atrocious. He did a lot of tutoring after we married and his reading skills are so much better! When a parent has dyslexia, their child has a 50% chance of having it as well. It appears Carly may be the lucky one. I have been concerned for awhile but have just tried to assume it is due to her age and it will get better. It isn't getting better and in fact it is getting worse. She is super intelligent kid and anyone who meets her and can tell right off the bat. But her schoolwork is a whole different story. She confuses B,D,and P. She confuses M and W. She writes about 50% of her letters and numbers backwards. She is falling below the state accepted standard in reading comprehension and failing her spelling tests. She cannot remember the difference between front and back, up and down, and so on. She is already in tutoring after school Monday through Thursday to try to help her. I could go on and on. I spoke with her teacher about it and she assured me this is just all normal 1st grade stuff but I just don't buy it. Then the next day Carly came home from school all upset because her teacher, in front of the class, said "Why can't you just quit doing everything backwards?" (Don't even get me started on this.) I swore I was not going to be "one of those parents" but it appears I am. The school offers a "screening" test but it is the parent's responsibility to have formal testing done and the school district will not provide any further help for her until she has an official diagnosis. I called and spoke with Dr. Elliott who is the counselor we took Carly to about her anxiety and spoke with her about it. I explained to her what was going on and she said Carly absolutely needs to be tested. She said the earlier we catch it and get her started in a program, the better she will do in school and life from here on out. But guess what, insurance does not consider dyslexia a medical problem so they do not pay for testing. So it will be somewhere between $700-900 out of pocket for that. We have to do it though. It will pay for itself over and over if it helps her to succeed in school and life and helps with her self esteem also. She gets so frustrated. We will spend an hour doing spelling words and she will have them that night but then the next morning they are gone again...and there are only 12 of them. I do not want her to begin to think she is dumb. We should be getting a call in the next week to get the testing set up. Maybe I'll win the lottery sometime between now and then...

I Want To Be Where She Is

Anna has become quite a fan of food. She wants to eat as soon as she gets up in the morning, right before she goes to bed at night and pretty much all the time in between. It is so crazy to think there was a time not too long ago that she wouldn't eat. It is just crazy how things can change. I've been having a rough week emotionally this week. I do not know if it is hormones or just the ebb and flow of grief. I have shed tears on most days again and that is something I had not done in awhile. I think about Anna's upcoming hospital stay and another round of general anesthesia for her MRI ( I think this is her 6th or 7th time to be under general anesthesia and she is not even 3), her eye appointment and likely needing glasses or a patch or eye surgery, her worsening gait and probable need for orthotics, her continued seizures, her upcoming speech evaluation where they will tell me how behind she is... I just get overwhelmed sometimes. And I know, I know there are people who would give anything to be in our shoes, to have a kid who walks and talks, but it is still so hard sometimes. Sometimes it just comes out of nowhere and hits me like it is all new again. This has been one of those weeks. But then Anna walks in the room. She is smiling and laughing and she just changes everything. It is then that I realize that I am the one with the problem, not her. She is fine just like she is. She doesn't care that she talks funny, walks funny, has a lazy eye and some seizures. She is just happy to be 2 and alive and doing everything she can do. I wish I could see her life through her eyes so that I wouldn't be tempted to worry about how cruel the world can be and worry about how people will accept her as she gets older. She doesn't care about this terrible palsy and I so wish I could be there too...

Emily's Smile Boxes

There is a little girl (growing quickly might I add) named Emily. Her baby brother Jude had a stroke prior to birth. He has cerebral palsy and that is how I initally learned of this family. Emily wanted to make a difference in the lives of hospitalized children and their siblings so she started a non profit called Emily's Smile Boxes. She makes boxes full of crayons, coloring books, puzzles, etc. and sends them to kids in the hospital and their siblings. She has won many awards and is just really a fascinating little lady who is wise beyond her years. She is in need of more funding. I really don't promote many charities but I really feel like this is one worth supporting. I have no idea who all of my readers are (although I would love to know so drop a line and introduce yourselves) but I am hoping some of you are the generous kind. If so, please please please consider a donation to Emily's Smile Boxes.

EMU

Anna had another seizure last night. I called and reported it to the neurologist and now she will have to spend at least 48 hours in the EMU (Epilepsy Monitoring Unit) at Cook's. I am waiting for the scheduler to call me and set it and her MRI up. I am not excited about this but am excited about maybe being able to get her seizures under control. An update to my story yesterday is that everything has stayed in position but because I let the problem go on for so long I have damaged my bladder. It will hopefully repair itself over the next couple of weeks. So if you are pregnant and can't pee, don't wait like I did. Call your doctor and get it taken care of. Carly just got home from school and is in trouble for lying, again. I am about to pull my hair out. She is such a good kid, good student, sweet, and loving and I do not understand why she has to lie. I feel like it is something I am doing wrong, but I am doing the best parenting I know how to do and sometimes it feels like it just isn't enough. Sometimes I think I have over spoiled her to make up for the rough times with Anna. I don't know, somebody help me...

Why I Suck At Being Pregnant Part II

TMI so only read further if you really want to know... I have been having increasing difficulty urinating, almost to the point of needing to go have a catheter placed. I have tried to just deal with it but a full bladder that you cannot empty can get pretty painful. So I went to see my OB this morning and I have something called an incarcerated uterus. Basically my uterus is retroverted which is usually no big deal because it is that way in about 30% of women. During pregnancy as the uterus grows up and into the abdomen it usually flips into the right position. Instead of flipping, mine is caught on my pelvic bone and not moving up. It is still getting bigger though so it is blocking my ureters and thus I cannot urinate. He manually repositioned my uterus in the office this morning. Um, yeah, not fun. Not fun then and for sure not fun right now as I am still cramping like a mad woman. If it stays where he positioned it then great. If not, it will have to be fixed under anesthesia. I am praying every time I walk to the bathroom that I can pee, I do not want to be back in the hospital until it is time for delivery. Geez, can't I do anything normal?

Randomness

• The 24 hour stomach virus that everyone else in Anna's class had was a 4 day virus for Anna. She is finally well. She had a pretty nasty seizure during the night Tuesday night/Wednesday morning. I called the neurologist's office but they said that since she is sick the seizure doesn't really count. I was happy to hear that! No medication changes and no EMU! The only problem is that since she was sick she no longer wants to sleep. She is usually asleep between 7:30-8pm but now she is not going to sleep until more like 10pm. She also has not napped at school the past 2 days which is totally unlike her. (So sorry Ms. Jennifer!)I am wondering if her tegretol level got low during all of the diarrhea. The tegretol has helped a lot with her sleep and it is obvious something has changed because that girl just isn't sleeping.
• I am not usually one to do much to my hair. It is so coarse and dry that I am afraid to apply to much chemical or heat to it. I decided to go against my usual though and had something done to it called a "Brazillian Blow Out." I am so glad I did it. If you have curly frizzy unruly hair this is the answer. It lasts about 3 months and I am pretty sure I will have it repeated after that. It has made my hair soft and smooth and nearly frizz free. It used to take me almost 2 hours to blow dry and flat iron my hair (which is why I rarely did it) but now I can do both in about 20 minutes. It was an amazing hair transformation!
• I do not care all that much about football and am not all that interested in the Texas vs OU game this weekend but I will tell you what is on my nerves...all the stupid traffic that is making it impossible for me to get to town. Grrrr
• Carly attended a "mini cheer camp" after school this week. I am not a huge fan of cheerleading but if I try to steer her away from it I am afraid I will steer her directly to it so I just go along with it since it is only 1st grade. She will be cheering and doing a dance at half time at the high school football game tonight. She is so excited. I wish Kenneth was home so he could go too.
• My 27 lb Anna is too tall for the 3T jeans we have for her. Anybody ever try to find jeans in a 4T for a 27 lb kid? Don't bother, you won't find them. She is all legs. Certainly she takes after her daddy because Lord knows that isn't my build!
• That is all.