Monday, October 22, 2012
Never fails that when I begin to get tired and/or weary I receive a random message or call (sometimes from random strangers) from people who want to share with us how my son, his smile, or our story has impacted their lives or that they care. It always comes as a gentle reminder of what our journey is about. It is about pushing forward, overcoming, and allowing our journey to testifying how faithful our God is and how strong we can be when we choose to fully rely on him for our strength.
Sometimes it’s as simple as someone taking a few moments to share a few kind words, that helps me step back and put everything in perspective. So to each and everyone one of you who have taken the time to encourage us throughout this journey just KNOW that you have made a difference.
Take the time to encourage others whether you know them or not. Life can be challenging and in the mist of those challenges it is easy for our human nature to become defeated. Sometimes a simple reminder, whatever that may be, is all someone might need to muster the courage necessary to continue on! You never know what a significant impact those few words of encouragement might have on somebody's journey… so share them!
For myself, I find that I often get caught up in “the challenges of life” and quickly become exhausted.I know things eventually always slow down and I always manage to pull through, but in the meanwhile I sometimes need to be reminded of what our journey is about... Love, Courage, Hope, Faith, Grace!
"To the world you might be one person, but to one person you might be the world"
Sunday, October 21, 2012
Today we participated in the 4th annual Hope Walk which benefits Hopekids.
A note from Mylee’s mother Sara…
The Legend of the Backward Princess
Once upon a time, there was a princess who did everything backward.When she was supposed to be born, she almost died. But she lived, and everyone was happy.
But when she was supposed to swallow her food down, she threw it up, instead.
When she was supposed to walk, her legs wouldn't work right. And when she was supposed to sing, as princesses do, she struggled to make words.
The King and Queen and the whole kingdom loved their Backward Princess very much, but sometimes they just didn’t know what to do for her.
They visited royal doctors. They tried magic spells and potions and sometimes, the Backward Princess would surprise them.
With her sunshine smiles, her wiggles & giggles, her dances with her mommy, and the times she could say, “I love you, daddy” she would fill the kingdom with hope.
A new princess joined the family, and she zoomed forward and loved her princess sister.
Together, the royal family filled the kingdom with their brave journeys, their love & smiles, and really awesome facebook pix.
The Queen herself went on a quest to cure the Backward Princess. She braved the dark forest of doubt and fear, she battled the deadly swamp monsters of health care, she learned from the sages, and through it all the King protected them when they needed it, and sent the Queen a margarita when she needed that.
But nothing they tried could change the destiny of the Backward Princess and before you knew it, it was her time to pass on. But she did that backwards, too.
She didn’t die from a magic spell or a dragon battle or a poisoned charm in fact, she hardly died at all.
Her backward story–and don’t forget those facebook posts–touched life after life after life . . . she just kept living in the hearts of the King and the Queen and her princess sister, and then her story grew beyond that, and she was celebrated all throughout the kingdom . . .
The Backward Princess taught many people how to live and love and embrace their lives and grow forward and her spirit will soar free, forever.
In Memory of Mylee, please donate to this wonderful organization. We continue to give praise, to fight hard, and to have 24:07:HOPE... Give to Hopekids Arizona!! ♥ http://www.hopekids.org/ .
Saturday, October 20, 2012
Tuesday, October 16, 2012
I'm a real person and there are times throughout this journey that I get exhausted, overwhelmed, and even feel defeated. Even when my human nature causes me to stumble or fall I know I will ALWAYS get back up!!! I was born a fighter and I will die a fighter and when I can't find the fight within myself I look at my beautiful little man David who is a perfect example of what courage in facing the world is all about. God is amazing and faithful & when I can't do it myself God always remind me that I can do all things through Christ that strengthens me!
Wednesday, October 10, 2012
Dear Friends & Family,
I have a dear friend who has two children with MPS IV. She is a single mom who has sacrificed her life to care for her children. Life has not been easy for her or her children. Yet, she still manages to embrace li
fe and move forward for her kids. Right now she has been traveling once a week, with two children in wheel chairs to get her kids the medical treatment they need. As a result, she has had to quit her job to focus solely on them and their care. This has taken a toll on her and her family financially, physically, and emotionally.
This morning she called me crying because she needs new tires and brakes for her wheelchair accessible van that she uses to transport her children. She is barley making ends meet and was overwhelmed with the thought of another expense that she does not have the funds for. I have been there and understand how hard it is to make sacrifices for your child’s needs at the cost of you financially stability. For most of us we have the luxury of taking care of our needs as they arise and I would really love to bless this mother and show her that God and people who care will help her provide for her beautiful children even if she personally doesn’t have the means to do so.
I have made a personal fundraising goal of $500.00 which would allow her to at least take care of the immediate issues with her vehicle. If everyone gave just a small amount we could make this happen very easily. Please help me show this family how truly special and supported they are!
I love you Darla, Kianna, and Justin!
Monday, October 8, 2012
Last night when David got tired he said "come on" and we made our way to his room. We cuddled for a second but I quickly left the room so he could get used to bonding with Cadance. To our surprise he stayed in bed and didn't even get out once. So then mommy went stalker and watched him for hours from monitors in my room ;)
Day two and he didn't even get out of bed to look for me... I think my feelings are a little hurt! LOL
Saturday, October 6, 2012
9:44pm - Uggg... It is bed time ;( David and Cadance are in bed and mommy is going to watch them on surveillance for a few hours before I try and sleep all ALONE in my King size bed. I think the hardest part will be keeping David in his own bed since he keeps trying to climb out to find me. To tell you the truth it might be even harder keeping me from crawling into bed with him. Gosh I love him my little man so much, but this separation (as hard as it is) is long over due!!!!
10:32pm - So I broke... After watching David sit at the gate and pathetically look for me, I crawled into bed with him. Right when I laid down with him and he grabbed my arms and wrapped them around him. I laid there and cried until he fell asleep. I AM A BIG GIRL... I CAN DO THIS! I just have to keep reminding myself that this is just another challenge to get us to the amazing life we have been waiting for... the life God has for us.
5:06am - We did it!!!! We both made it through the nights in our own beds. I was woken this morning to David sneaking out of bed and setting off the alarm ;) Well we made it through the night and I even woke up at 5am for a practice run.
Last night we let David and Cadance just get acquainted to one another. David was able to sleep with me one last night. Today the two of them practiced lying in bed together. We watch them through surveillance in another room. Their bond is priceless! I cannot lie mommy is a little jealous. I know that tonight will be a very long and emotional night for me.
Last night we had the opportunity to finally meet our new Service Dog ~ Her name is Cadance and she is beautiful! David and her had an immediate connection and they have already developed a couple of precious games with each other! Boot camp is and will be intense and will keep me very busy for the next few weeks, but it is a very small price to pay considering that this amazing gift is a Dream Come True for David and I!!!
Thursday, October 4, 2012
I just got of the phone with Brian the owner of Arizona Goldens, I still don’t know what dog we are getting because it is a surprise, but we are officially beginning boot camp tomorrow evening. This means that for the first time in 15 years David will be able to sleep safely in his own bed.
Brian said they recently took our dog to an event for children with a variety of special needs so that they could expose the dog to various medical conditions and see how she interacted. He said that the dog immediately showed interested in particular children, but all of their special needs were very different. After speaking to the parents of the children the dog took to, he discovered that although the children all suffered from different disabilities the one characteristic they shared was epilepsy. This is very comforting news.
I wanted to again than SheKnows for all of the amazing things they have done for our family. Life is so very different for us now and Thank You just doesn't seem to be enough!!! I also wanted to thank our church. the River of Life who took a love offering for David and I last Sunday. As a result, we were able to collect enough money to purchase a home surveillance system. Tomorrow morning we are having surveillance cameras installed throughout our house so that David can be monitored (for his safety) as we get adjusted to his new found independence.
I am so very excited about this step in our lives. Although, I must admit that letting go of some of the customs that David and I are so use to is still a little scary. Lately I have been working long hours and it seems as if the only time David and I get to bond and cuddle is bed time. Him and I both having our independence is long overdue, but not having an excuse to keep him in my bed is giving mommy a little separation anxiety.
I guess that means it is time for us to create new customs and traditions in our NEW LIFE =)