La Cueva & Fillmore Hiking Trails

Last Saturday the family decided to go for a hike. Bob and I really aren't sure how long we will be living in NM (based on information we have been given it appears that we will not be here for very long) and we want to make sure that we see as much of this area as we can. It is important for us to explore the Las Cruces hiking trails first and then venture to the other cool places that surround this beautiful area.

One of the places that everyone raves about that we had not yet been to was a hiking trail called Dripping Springs. We thought that this area was just one trail, but in actuality it is three trails on the same property totaling about 5 1/2 miles of hiking. We decided to hike the La Cueva and Filmore trails and save the trail that is called Dripping Springs for another visit. We ended up hiking about 3 1/2 miles. Sarah was a trooper, as always, and managed to get through the hike albeit a lot more tired after it was all over. (We ALL were exhausted - it was a tough trail.)

The trail was pretty, but nothing is as beautiful to me as Soledad Canyon. While I was impressed with the trail and glad that I hiked it with the family I still firmly believe that Soledad is heaven on earth. Living here I am  reminded that I am so blessed that I get to live in a country that is so diverse as ours. I am so blessed that I get to experience the life that I am living. New Mexico is beautiful beyond words.

Take a look at our hike:

At the entrance of La Cueva trailhead.

This trail curved right where the bushes are. 

The desert flora is amazing. 

Sarah right before she touched this amazingly soft flower. It was kind of like an over sized dandelion thingee. (Nice description, right?)

There were butterflies everywhere on the trail. A couple almost landed on Sarah. 

This is the trail....pretty rugged out here...this is why Bob and I are always so proud of Sarah for making it through these hikes because they are such tough terrain. 

A cave where a hermit lived many, many years ago. 

Mr. Andrew just hanging out waiting for the back of the line to catch up with the front. 

We hiked up into those mountains where we found a 70 foot water fall still trickling. 

THIS is the trail for part of the hike...I was guiding Sarah through the trail so that she did not fall. 

Me and Sarah walking step by step to get to the waterfall. 

This is the end of our hike (or so we thought)...we thought the trail was a straight shot to the building in the background which was the visitors center/ parking lot. INSTEAD the trail went in a circular direction and took us WAY out to the left and then came around behind the visitors center on the opposite side of where we currently are in this picture. 

Las Cruces proper is in that valley below. 

Josh at the end of our hike misreading the sign and thinking that we still had 2.4 miles to go...

It truly is the wild west. 

We have never been so happy to see a the parking lot before! 

A Little Birdie

For some reason birds are constantly running into our windows. I would venture to say that just about every day we here the 'ting' sound of another bird running off course and landing smack into the glass of our home. It reminds me of that Windex commercial with the crows....Anyway, the kids and I came home from somewhere last week (who knows from where I cannot even remember what I did yesterday at this point in my life) and found a small bird laying on its side on the ground in front of our family room door.  We thought he was dead at first, but when we went to go pick him up to throw him away he scooted away from us thus letting us know that he was NOT indeed dead.

We used an old wash cloth and got him back on his feet. The girls made a make shift home for him where he stayed for two days. We fed him some birdseed and used a Barbie dish for a water bowl. On the second day he fell into the pool after having hopped out of his little house. Thank goodness we were home and that Elizabeth was obsessed with him and would not leave him alone the whole time he was with us, otherwise he probably would have drowned. (He was probably trying to run away from her!)

We rescued him from the pool, kept him wrapped up in extra wash cloths, and when he was all dry Andy got him to fly away. Maybe the little bugger was just dazed after hitting the back door and needed a couple of days rest before leaving the coop again. Who knows?

The bird wanted to check Lily out. Lily, on the other hand, wasn't too sure about this whole arrangement. 

As the bird moved close to Lily I think she darn near pooped herself. 

Resigned to the fact that not only does she have to contend with Sam, but now she has to deal with this two legged creature as well. 

That is until Sammy comes over and puts the bird in his mouth. (No animals were hurt during the taking of these pictures.)

Lily and Sammy watching the bird as we placed it outside of the fence after Sammy tried to eat it. 

Andy trying to get the bird to fly on its own. 

"Motherbird" herself taking care of her baby.

A Birthday Boy - Joshua

13. My youngest son turned 13 years old at 9:55 (est) this morning. As my lightest child weighing in at 8 lbs 14 oz, Joshua has truly been a blessing. He such a sweet boy. He doesn't like to show his emotions yet underneath his exterior he is a sensitive boy - young man - for sure. At one point in his life I found it very hard to connect with him. It isn't that we did not get along it was just that I found it harder to form a bond with him than I did with the other children. He does not let people in very easily and for years I felt like I was on the outside of his circle of trust (to borrow a line from Meet the Fockers). That changed about two years ago when life was a bit chaotic for our family. Since then he has let me into his inner most thoughts and feelings and I am honored that he trusts me in a way I am not sure he trusts most other people. I take great pride in the fact that I am a confidant of his and I will never betray him. He is hands down the funniest person I know and he is spot on with his one liners. He makes me laugh like none other. He is an amazing athlete. He is honest and loyal. He is not a follower, but is a leader in his own quiet way. I  love watching him grow.  I am honored to be his mother.

Josh chose to have a quiet day at home today. He was feeling pretty sad this morning and was missing his friends and family. He did not like not being surrounded by those he loves as is the norm for his past birthdays. It has been hard for him to adjust to having a quiet day. We offered to take somewhere or to do something outside of our home, but he just wanted to rent movies, play video games, and play in the pool today. I was okay with that.

He is looking forward to visiting his friends and family in Ohio in 10 days. He told me that was when his real birthday begins.

I cannot wait to see what this next year brings for Josh. He is amazing. I am proud of him beyond words. I love him with all of my heart.

Happy 13th Birthday, Joshua!!!

The Upcoming School Year

Nothing gets me more giddy than a new school year. When I was a student myself I loved the beginning of the school year. As a mom I have always loved the beginning of the school year whether my kids were homeschooling or attending the local public school. There is something about new school supplies, outfits, book bags, haircuts, books that makes me happy. I don't know why, but I find that I am not alone in this feeling.

I will be beginning my 5th year of homeschooling this year. It will be the beginning of my third year this second go around. (I homeschooled my boys for two years when they were little prior to sending the kids off to public school for 4 years.) I am more confident in what I am doing, but also more scared in what I am doing as Andy is beginning his freshman year of high school at home. I find that most homeschoolers seem to find more traditional means of schooling their children once the high school years roll around, but there are some of us who continue on the homeschooling journey right through high school. I feel very confident in my ability to give Andy a quality education just as I feel confident that if there is an area where I need help I have the resources to reach out and get him the educational help he needs while still being able to homeschool him.


Homeschooling fits our lifestyle very much and I am proud that I have an amazingly supportive husband who sees the benefits in our kids learning at home. I have reread the book, The Well-Trained Mind, by Susan Wise Bauer and am coming back around to this style of homeschooling. We have been back to her methods for a while actually, but I decided to continue on with her classical method of homeschooling this year because it just makes the most sense to me in terms of what I would I think would be an outstanding education for my children. What I take away from this methodology is that it is a very hands on style of learning. I love that it is very writing intensive and that it draws much of its learning from real books instead of text books (although there are still some textbooks used.)

I just ordered all of the kids books for the kids for the upcoming school year. We will be beginning June 15 with our next school year and will follow a year round schooling method of three weeks on and then one week off. My idea is doing our school work this way is that I can go month by month taking at look at our schedule to see which week during that month would be our one week off. I find that because we live so far from our family it is nice for the kids to not have to do any school work when we have visitors. By following the three week on and one week off schedule I have the ability to make sure that everyone is getting a quality education while still allowing everyone time each month to fun and relax.

Another reason for this way of homeschooling is because I absolutely cannot do everything that needs to be done in a home AND homeschool AND still maintain my sanity. The week off each month will allow me (and the kids) to deep clean the house. (We are able to straighten up, sweep, vacuum and those sorts of things while we homeschool, but things like dusting, cleaning windows, washing the floor beyond a quick swiffer just cannot be done while homeschooling 4 children. At least it cannot be done by this mama. If you can do it - you have my awe and respect.)

Here are the subjects my kids will be studying this yea along with the books they will be using:

               

     Andy

         

Vocabulary - 

Vocabulary From Classical Roots (Level C)

Writing - 

Writing Strands 7

Rhetoric - 

A Rule-book for Arguments

Grammar - 

Analytical Grammar - A Systemic Approach to Language Mastery

Great Books/History

The Renaissance - A Short History

America - A Narrative History

A History of Asia

Don Quixote

Divine Meditations

Paradise Lost

Gulliver's Travels

On American Taxation

The Declaration of Independence

Common Sense

The Federalist

The Autobiography of Benjamin Franklin

The Rights of Man

A Vindication of Rights of Women

Pride and Prejudice

Oliver Twist

Jane Eyre

The Scarlet Letter

Moby Dick

Math - 

Algebra 1 (Saxon Math)

Science -

Biology - A Self Teaching Guide

Euclid's Elements of Geometry

Aphorisms - Hippocrates

Physics - Aristotle

Latin -

Latina Christina 1

Spanish -

Living Language Spanish

Art - 

Misc Study

Music -

Misc Study

Josh

Vocabulary -

Vocabulary from Classical Roots - B

Logic -

Advanced Formal Logic

History -

A Story of the World - Volume 3

Grammar-

Shurley English Level 7

Reading -

Various Classic Books

Writing -

Wordsmith

Science - 

 Chemistry (CHEM C2000)

Math - 

Algebra 1 

Latin-

Latina Cristina I

Spanish-

Living Language Spanish

Braille -

Using curriculum from school for the blind

Art-

Various

Music -

Various

Sarah

Logic-

Building Thinking Skills

Math - 

Saxon Math 6/5

History - 

The Story of the World - Volume 3

Spelling-

Spelling Workout Level E

Grammar

Shurley English Level 4

Writing-

Writing Strands Level 3

Science -

 Biology

Blood Typing Kit

Finger Printing Kit

Little Labs - The Human Body

Little Labs - Botany Greenhouse

Latin -

Latina Christina I

Braille -

Using cirriculum given to us by the school for the blind

Art-

Various

Music-

Various

Elizabeth

Spelling -

Spelling Workout C

Writing-

Handwriting without Tears

Grammar-

First Language Lessons for the Well Trained Mind - Volume 3

Math -

Saxon Math 3

History -

The Story of the World - Volume 3

Science -

Adventures with Atoms & Molecules

Latin-

Prima Latina

Art -

Various

Music -

Various

Character Studies -

Various

As you can see we have quite a year planned. Science will be done in blocks of 90 minute sections twice a week. History will be done 3 times a week in 60 minute blocks. Math will be done daily along with grammar, spelling, and writing. Latin will be done twice a week in 90 minute blocks. Spanish will be done 3 days a week in 60-90 minute sections. Art & Music we will spend a good portion of time doing once a week most likely on Fridays. Rhetoric & Logic will be completed 3 hours weekly. We will also spend 1 hour  daily reading from a list of great books on top of any "fun" reading they spend doing each day. 

Again, I am very excited for the upcoming year. I have spent hours getting this upcoming year together from planning out the year and choosing the books we will use. I cannot wait to see what we learn this year! I think the kids are going to have an amazing year. 

A Good Day For All

The kids and I had a great day yesterday. With the exception of Josh's soccer practice - which was his first one back in about 8 weeks where he had no restrictions at all - we cleared our schedule for the day. Then we swam, made cupcakes, went to the store to buy junk food so we could have some good eats for our day, built a fire, played basketball, swam again. But my most favorite thing we did? We laughed. We laughed, all 5 of us, until our bellies hurt and our sides ached. (Bob is in Charlotte away on business this week.)

As we were all sitting around the fire the kids began to talk about what this whole experience with Sarah has been like for them. Sarah began to talk about her biggest fears and what she remembered from the day of her diagnosis. The kids asked her questions that they had been wondering about for a while. We then talked about what the future may look like in terms of finding a cure to restore the myelin on Sarah's optic nerves so that Sarah may see again. We looked up articles on-line of studies being done both here in the States and across the pond in the U.K..  I did not say too much while they talked. I wanted to hear about this experience in their own words. So, I just sat back and listened while they talked with each other about their memories of the last two years. When I was asked a question directly I answered it, but other than that the conversation was theirs to have. It lasted 30 minutes and then it was done. I think it was nice for them to talk freely about things.

After that we sat by the fire some more and chit chatted about other things. Then we all snuggled into my room and read some chapters out of the book Black Beauty. The kids had camped out on my floor. It was nice to have us all snuggled into the same room together. We needed that. It seems like our schedules have been so hectic for a while. To be able to take a day to reflect on our lives was an amazing gift that we all cherished.

Here is to HOPE for the future and what yet may come...

Two Years In

May 18th will be etched in my memory for as long as I live. Today marks the two year anniversary of Sarah's diagnosis. Two years ago our lives changed forever.

I can remember the kids picking me up from the hospital that Saturday afternoon. It was about 1:30. I had just had my tubal reversal surgery and I was looking forward to going home as I was in a bit of pain. I remember the kids coming into my room and Sarah saying that she could not see anything. I remember the frightened sound of her voice and my gut told me that something was very, very wrong.

Before her diagnosis.

I guess, looking back on it, I knew days earlier that something was very wrong with her. I knew it in my gut, but I had not yet learned the importance of listening to myself, so I just ignored the feeling. Sarah had stayed home from school Monday - Thursday of that week with a terrible headache. She was sleeping 20 hours a day towards the end of the week. She could not move her eyes. I took her to see her pediatrician on Wednesday of that week. She thought maybe it was allergies as Bob suffers from then. We were sent to get  an x-ray of her sinus cavity to see if there was any sign of her being an allergy sufferer. The x-ray came back clean. I was sent home and told that if her symptoms got any worse to go to the ER. Thursday morning began with Sarah throwing up. This coupled with her headache I decided to take her the the ER and she had a CAT scan to see what could possibly be causing such a prolonged headache and now vomiting. The CAT scan showed nothing, so with a family history of migraines, I was sent home with a prescription for migraines. Friday morning was amazing. I remember the sun shining brightly. It was a beautiful Ohio May morning. Miraculously, Sarah woke up headache free and wanted to go to school. I sent her and told her that her Nana (my mom) would be picking her up because I would be in the hospital having my surgery. (The kids knew about my surgery because I felt it was important for them to know what I was doing.) Sarah was grateful to be going back to school. Little did we know that that would be her last day.

The day she was released from the hospital the first time.

On Saturday morning, May 18th, Sarah was sitting at her sibling's soccer game when all of the sudden she lost her vision completely. Everything in her world went dark. She was scared and panicked. Of course, she would be. Bob and the kids came and got me from the hospital and then we proceeded to go Akron Children's Hospital where we spent the rest of the afternoon & evening in the ER.

I only can remember snapshots of that day. I can remember Sarah sitting up on the hospital bed trying to find me and calling out my name, scared, because she could not see me. I remember her reaching for me. I remember that glazed look in her eyes that told me that she saw nothing. I remember the parade of medical students and doctors who came into her room because Sarah was such a unique patient. I remember her pupils being dilated to the size of her irises and that excited all of the doctors because they could see so clearly the inflammation of Sarah's optic nerves. I remember getting my first lesson in telling the medical community 'no' when they asked again and again if just  one last person could look into Sarah's eyes and finally Bob and I telling them no. That this 8 year old little girl did not need any more unnecessary poking and prodding.

I remember the IV's, the spinal tap, and the MRI. I remember her taking everything like a champ. Never fussing or crying, but just silently doing what was asked of her. This stoic attitude would become what she was known for. I remember hearing the words Multiple Sclerosis floated around. I remember stepping outside the hospital to call my mom who by this point had left work to take care of our other 3 children. I remember telling her that they thought it was MS. I remember sobbing in Bob's arms at all Sarah was facing. I remember Bob sobbing in my arms at all she was facing as well. We put on a brave face in front of her though and tried to remain calm among the flurry of nurses and doctors rushing in around us. I knew that something was very, very wrong when Sarah was pushed to the front of the line for everything...her spinal tap, mri,etc...This feeling was confirmed in the eyes of the doctors and nurses as they would talk to Bob and I. One nurse broke down and cried. She told us that she was so sorry that this was our diagnosis. I remember the diagnosing doctor coming out of the MRI while Bob was still in there with Sarah and telling me how sorry he was to have to tell me this, but that there were lesions on Sarah's brain. That she had MS and that he wished desperately that he had other news to tell me. He told me to stay away from the internet and the stories that it held. I remember knowing nothing and feeling like I was in a fog. I couldn't understand why the doctors and nurses were so sad. My mom had/has MS and she was/is doing great. It was only until later (after having searched the internet) that I discovered that pediatric MS patients usually fare worse than adults because they live with the disease longer and the cumulative effect of the disease ends up making them worse off in the end.

Home after the second time she went into the hospital.
Sarah is now on steroids as evidenced by her puffy
cheeks. 

Sarah was admitted to the hospital that night. We were in for the first of countless visits. 5 days. She received the first of the IV steroids that she would be on almost continuously for the next year and a half. Her little body ballooned to an almost unrecognizable size. Her vision came back, but not 100%. The doctor told us that because she would be on a steroid taper, and would have a suppressed immune system, that it was best she not go back to school. She ended the 4th quarter 3 weeks early. Because of her outstanding work thus far, she received straight A's on her last report card. The school she attended was wonderful. Her second grade teachers were amazing.

With some encouragement we decided to enter a Pedal to the Point bike race which supports the National MS Society. Bob and I - with the amazing support of our community - raised several thousand dollars and we biked 30 miles in support of the cause. Sarah's best friend raised over a thousand dollars (if my memory serves me right). She had a lemonade stand day after day. I will never forget what she did for our family. What she did for Sarah. I will always hold a special place in my heart for Leah because of the love she showed Sarah. She never treated Sarah any differently. Sarah was still just Sarah. That, too, was such a gift because all my girl wanted to feel was normal. When she was with Leah, she felt that way.

We thought that everything would be okay after that. That life would settle down and that we would learn to manage this disease. Little did we know what we had coming our way...

Sarah has now had her diagnosis changed to Neuromyelitis Optica. She has been through more than I would care to share. Through hospitalizations, procedures, jerk doctors, great doctors, and relapse after relapse she has been a trooper. That little girl, who has been through so much in her short 10 years, is a model of grace and dignity. She is courageous beyond belief. She could probably give an IV better than some of the nurses she has had!  In short, Sarah is amazingly resilient. She is beautiful beyond belief - both inside and out.

We have been through countless doctors as most don't want to take on a disease as serious as Sarah's. Bob and I have fought for her care in ways we never thought we would have had to. We have had some of the crappiest stuff said to us about Sarah's future and we have experienced some pretty unethical things too. But,  on the flip side, we have experienced some amazing nurses who time after time took amazing care of her.  We found Dr. Locastro who was a life saver and a sanity saver time and time again. I will always be grateful to the care he gave Sarah and for the battles he fought on our behalf.


Sarah did end up losing her vision, but I know that we fought as hard we could to keep it. As a family, we have wrapped our heads around Sarah's vision loss. I would be lying if I said that I do not sometimes worry about her future. NMO is an ugly disease. It is an unpredictable disease. It is a disease that kills 1/3 of its patients. I try to remember that Sarah's life (nor are any of ours) are not guaranteed. That at any moment she could wake up and not be able to walk. That she could lose control of her bladder and never regain function of it. That she could lose her cognitive ability. I don't know how I would be able to survive if any of those things happened. The good news is that, right now, I don't have to face any of those issues. Maybe, I never will.








Today we will spend the day reflecting and celebrating. We will celebrate all that we have made it through. We will celebrate all of the good times we have had despite all that we have been through. We celebrate the fact that although this disease changed us all irrevocably it will never take away our H-O-P-E. There will always be hope. Hope for a cure for NMO. Hope for a way to restore Sarah's myelin so that she might someday see again. Hope for an amazing life for Sarah to lead.  Hope for the future....

 

Not feeling well...again...but with a snuggle buddy. 

Sarah has always had the most beautiful eyes. I found it a cruel joke for a long time that God would take the vision from these beautiful eyes. 

I leave you with this poem/story that was sent to me at the beginning of our journey. The reflection below is so true to our life:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Photo courtesy of: wikipedia.org