Thursday, June 23, 2011

"Remembering Alexis, Finding Perspective in Love and Loss"

I have know about Margaret Dave, and Alexis for some time. I learned about their home, winery, and pieces of their story through my friend Susan. I attended a wine tasting at Alexis's house about a year ago and knew Margaret had written a book about her life. I looked at one store for the book a long time ago and when it was not there I simply forgot.

I am not a big reader. I read blogs and short articles. I can read medical reports, and studies with the best of them but books........? I am pretty sure I have not sat down and read a book from cover to cover in the 13 years I have been a mother.

However, after Shawn and Susan's wedding I was given a copy of  "Remembering Alexis, Finding Perspective in Love and Loss" I was excited to finally have it in my hands but was unsure when I would find the time to sit down and read it.

Last night I finished it..... cover to cover.

I am in awe of this mothers journey. Not just because she is a mother of a special needs child but because her story and mine are so much alike in many ways. She wrote about her struggles with her childhood, struggles with relationships, struggles with meeting the needs of her other child, struggles with her identity, and the struggle for true happiness.

The physical happenings of her life are very different then mine but her attitude and emotion, her commitment and understanding, and her unwavering willingness to fight an uphill battle to make a place in this world for her special child, reminds me so much of my journey with Makenzie.

I cried, I laughed, and I thought long and hard about certain parts of my life. I was reminded by Alexis's life and death, through the words of her mother, how much of a miracle Makenzie is. I was given renewed strength knowing that even though this life is not what I would have chosen, is it rich and full. This life that God has given me is more then I could have ever dreamed for myself.

I don't remember Margaret's exact words at Shawn and Susan's wedding but what I did take away from her toast was that God only gives the gift of children like Alexis to a few people and there is a reason for that.

The privilege and honor is mine!  Makenzie I am so proud to be your mommy! You are one amazing little girl!

Believe... Prayer Works!

Tuesday, June 21, 2011

BBQ and Campfires

Once again life has been busy! Summer is in full swing with the kids off of school, Makenzie's continued therapies, and extra fun like heading to the cabin with my mom and dad for the weekend.

Every time I conceive of taking the plunge to go away for the weekend I have to breath a big eye rolling sigh. Then I have to dig my heels in and start on the daunting task of gathering everything for 4 kids not leaving out all of Makenzie's stuff. I have to plan and organize her food and make sure I get everything without bringing my whole kitchen with me. All the while keeping it in the front of my mind how much fun we always have once we get there! This in the key!

My goal was to leave at 10 am on Friday morning. I think we finally left town about noon after stopping at the bank, Target, the gas station and Good times for some lunch. Oh well! I managed to get 5 kids and all of their stuff in the car which is all that matters! After stopping once for a little break and some Starbucks we made it to our destination at about 2:30pm.

The weekend started out a bit rainy and cold. It would let up and we would run outside only to find ourselves in the middle of a windy rainy mess. Makenzie thought the rain was great and Morgan fell asleep covered in one of Makenzie's old jackets. Once we arrived back home it was time to sit in front of the fire to warm up.

On Saturday we enjoyed some amazing time out in the fresh mountain air polluted by the smell of BBQ venders lined up and down main street. There was live music, games, pig races, and or course tons of food!

And enjoy the food we did under the shade of a tree in the park.  When all of the BBQ had been devoured it was time to move onto something a little bit sweeter. Really what is a festival without a funnel cake and several forks!? I am pretty sure the boys had most of our sweet treat gone before I could blink and Josh topped it off by using the plate as a funnel to suck down the rest of the sugar.

Makenzie and Morgan just took it all in like champs!

I could not find any of Morgans jackets before we left so I found the only 12 month thing I had left out of Makenzie's. So Mr Morgan got to be my pink prince for most of the morning until it warmed up!

The boys also decided they needed a try at riding a bull. Mr. 10 could not partakebecause of his broken thumb but the other two boys gave it a valiant try and both walked away smiling.

We had a really great day and then a really great night back at the cabin roasting marshmellows for S'mores.

We headed home on Sunday, unpacked, cleaned up a bit and started this week with a bang.

Makenzie has a ton going on right now including many new pieces of equipment that need to be ordered and advocated for. I am tired but so excited that Makenzie is at a point were she needs a power chair, a new talker which she is using so well, and a walker! VERY exciting stuff!

Believe.... Prayer Works!

Friday, June 17, 2011

Wedding Bells

Last weekend I had the honor of standing up for my good friend Susan as her Maid of Honor.

Susan and I met a couple of years ago through a special needs parent board and the connection we had was immediate.

Our little girls are the same age, their injuries happened about the same time, and we were both single mommies.

Susan's daughter, Julia, suffered from a very serious vaccine reaction which caused viral encephalitis and serious brain damage.

In the grand scheme of life I  have only known Susan for a very short time.  Our little girls are so very different but  oh so very much the same.  We have the same dreams, the same goals, the same pain, and the same joy.  We are mothers who have special needs children.  We are both mothers who fear daily for our children’s future,  but rejoice over our  little girls mere existence. It is a life which has very high- highs, and extreme lows

When Susan told me about her boyfriend,Shawn I had my doubts. I mean who would choose this life. Who would choose brain injury,  seizures, special schools, mounting medical bills, IEP’s, weekly therapy, behavior modification, lawsuits, screaming kids,  and so much more.
Then I met Shawn. I saw the way he looked at Susan.   I watched him with the kids. I immediately noticed  his connection to Makenzie and Julia. It was then I knew there was nothing to doubt. God was in control!

Over the last couple of years Susan and Shawn have been through many highs and lows together. There have been many circumstances which have tried to pull them apart. However,  they made it to this perfect day.  I am so proud of my amazingly strong,  undoubtedly beautiful,  and incredibly  determined friend.  I am so happy that Shawn and Susan found each other. What a truly amazing family they have created!  

The weekend was amazing! It was full of emotion and beauty! It was full of joy and excitement! It was full of meaning! It was full of special kids and special souls. It was invigorating and exhausting all at the same time! It was an amazing wedding!

Shawn and Susan chose to have their big day near the garden at Alexis's house. Alexis was an amazing young woman with a very special mommy! As Margret wrote in her book "Remembering Alexis Finding Perspective in Love and Loss" ..... 

 "Although apparently normal at birth, Alexis never grew to be larger than a six-year old.  She could never sit, stand, walk, talk or feed herself.  She never played with a toy or knew she had a birthday.  An exception in every way, doctors guessed Alexis' IQ to be less than fifty, and she never had a diagnosis. Alexis lived for twenty-nine years with her mother, Margaret."

Alexis's house is a early 1900 Sears home which Margret and her husband were having restored for Alexis to live in with a caregiver. However, shortly before her home was finished Alexis mysteriously died.

Alexis was smiling down from Heaven last weekend. Thank you Margret and the rest of the Rhyne family for sharing Alexis with us! I know she touched my heart!

Thank you Shawn and Susan for the honor of being at your perfect day! Thank you for inviting Makenzie to also become a real princess for the day! You two are such amazing people! I hope you are not reading this right now but enjoying you time away! Love you guys!

Believe.... Prayer Works!

Sunday, June 12, 2011

Makenzie's Independence.... The Power Chair Trial

This weekend was AMAZING! It was super busy but the time we were able to spend with great friends was so worth it! I will post about our weekend after I work on the 300 plus pictures I took. For a little teaser I was a maid of honor and Makenzie was a flower girl! Beautiful coming right up...... soon......

For now though I wanted to share a bit of today with you.

On Friday our wonderful seating guy came out to bring us a power wheel chair for Makenzie to trial. We also had a few other things to discuss as Makenzie needs a new car seat, walker, and bath seat.

Our days were full of being beautiful women and little girls on Friday and Saturday so the chair stayed in the same corner it was left in until this afternoon.

Mr 13 and I got to work on the chair starting with taking the switches off of the tray and moved them to the mounts on Makenzie's head rest. We super velcroed some extra padding down and wheeled it out the back door and onto the deck. Then it was down the ramp we went and out into the park.

When we put Makenzie into the chair she acted like she had used one her whole life. She giggled and laughed and then showed us had dang smart she is.

I can't tell you how over the moon I am right now. I knew Makenzie could do it but she really surprised me today!

Ironically this evening I got an email from our amazing seating guy checking in and letting the rest of Makenzie team know what we had decided to order. I forwarded a link to the above video to the group and this is what I got as a response from the therapist who evaluated Makenzie for the Power chair and who will be ordering it as well:

"YESS! I just cheered out loud!

I especially loved how she just turned all the way around using the right switch since she didn't have a left switch, to line up with dad for the final forward putt!

Time to schedule an appointment to spec out the power chair :) that was fast."

Words can not express how grateful I am for this day, this perfect home, and especially the healing God has given Makenzie.

Believe.... Prayer Works!

Thursday, June 9, 2011

Round Two!

Hippo Therapy went much better this afternoon. Makenzie got a little bit tight when she first saw the horse but warmed up much faster. After she got on the horse Makenzie was all smiles and laughs!

This therapy center is beautiful. Normally when I envision horses I think of smelly stalls, poop, flies, and lots of mud. Not this place. Everything is immaculate. It is very inviting.and super comfortable. There is no smell and all of the animals look clean and very well cared for. I love it!

Today was a bit overcast so we were able to head outside on the horse. The boys ran ahead to the playground as we strolled up the hill. I am not much of a horse riding person but at that moment I wished that I also was hanging out atop of a saddle.

Makenzie decided shortly after we got outside that it would even be ok to look at and touch the horse. Seeing her progress is just amazing! Watching her be afraid seven days ago and then watch her remember her fear but also remember the fun she had and be able to work through it this afternoon is just amazing!

I am not sure what the full plan of action is for this therapy yet but after today I know there will be a plan. Makenzie was able to relax and enjoy herself. She did not leave a tight mess like last week.

Instead she left with a huge smile on her face, ready for more!

I am so very glad that Makenzie has the opportunity to get on a horse. Also to be with a therapist who loves her so very much and knows just what she needs!

I am so thankful for Makenzie's smile and her generous laughter.

I am so thankful for Makenzie's brothers who celebrate all of her victories with her! Makenzie is so lucky to have them along for the ride!

We are so dang blessed!!!!

Believe.... Prayer Works!

Wednesday, June 8, 2011

Happy Birthday's and Other Rambling Thoughts.

So much is going on. I have so much to say but not enough time in my day to say it all.

So I will start with this......

Morgan turned ONE yesterday. He is growing up so fast! We had a birthday party BBQ for him and had a GREAT time. I never understood how you could love a child that you did not give birth to so much until Morgan. I have spent many many hours taking care of him over the last year. I was there when he was born, I have taken most all of his baby pictures, he has lived with me for a good portion of his little life and man oh man do I love that boy!

As we sat on the deck of our our new home for this special moment I was again filled with emotion. This house is so perfect. I think my favorite part is the deck, yard, shade trees, and the huge park out back. Before the party started we sat out on the deck and watched all of the older kids play catch, and the 500. My heart swelled!

After dinner we we came in to sing Happy Birthday to little Morgan. I sat Makenzie in her chair with her talker so she could sing too and she sang to Morgan over and over along with Twinkle Twinkle, Away in a Manger, and Amazing Grace!

However, Morgan was less then thrilled when we all started to sing. He tried to crawl out of his chair and even shed a few tears.

But all was well in the world when he realized that he was going to get cake!

And when the cake was gone he thought he should try and eat the plate!

What a great time! What wonderful memories!

Yesterday we also had a rep from PRC come to show us the eye gaze device they sell. This talker would allow Makenzie to communicate by looking at a screen to make her choices while a camera scans her retinas. Makenzie did GREAT! The rep was able to get the device calibrated to Makenzie on the first try and Makenzie picked up on the eye gaze technique very fast! This would be a much easier way for Makenzie to communicate! I am so proud of her.

We are going to trial a device starting next week and then hope to order one very soon! I am posting a very poor quality video while we were trying the device. Every time Makenzie would see the camera she would stop so I was trying to stand behind her, interact with her, and help her with her held, all while trying to catch her using the Echo Point device. Also for some reason the device was a little slow and was not activating that way it should have but Makenzie just kept looking until it would pick it up.

This week we are also meeting with one company about a new walker for Makenzie on Thursday and another company is bringing a power chair that has been all set up for Makenzie to trail on Friday!

LOTS of exciting stuff going on!!!!

For now I am going to sign of and head to the movie theater with the kids to celebrate their first official day of summer break!!!!

Believe.... Prayer Works!

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