Stepping into the light

I have a few special little treats for you today… 

This blog is much happier than last week. Some very challenging truths overshadowed some of the amazing things happening and in the works. Unfortunately, that is life when you have a child with special needs… Every now and then, you have to face that they aren’t “normal,” you have to face the areas in which they are delayed. So far, that has only gotten more difficult for me, because Keegan is more and more delayed and less and less normal. So every time I come face to face with that it’s like someone knocking the wind out of me. I sit and gasp for air between sobs, as I let it all out.  All of the sorrow and broken dreams… Then a stillness comes over me and I calm down, pick the pieces back up and carry on.

On Armed Forces day I went to a formal dinner with my husband and saw Marcus Lutrell share his story. He is an author and Navy Seal. To sum it up: He is incredible! I obviously have not been through anything like the challenges he speaks of but I felt a strong connection to his spirit… We are both fighters. There are days I see the line in the sand and I don’t want to rise to the challenge, but I pick myself up and I do.  “If you’re not living on the edge, you’re taking up too much space.” Sometimes when you are living life on the edge and put so much of yourself into something, it’s easy to get knocked around… You have to put yourself out there if you are going to achieve anything. That doesn’t happened when you don’t push yourself, so it is easy to be complacent or afraid and say “I can’t.” But there’s no payoff at the end of the day. I don’t think I will ever be content, I will always want to do more. As long as I am living, there’s work to be done.

Some amazing things have been happening around here... We’ve got fuel for our fire!

We are on a roll and ready to go to Chicago! We’ve flown past the half-way point and have raised more money than I would have dreamed from our yard sale and our silent auction. We raised just over $1,000 dollars at the yard sale and just under at our Silent Auction!!! God is amazing and I am doing my best to let him work because he does much better than I ever could. We are so blessed and I want to take a moment and thank the people who have been so giving! To those that have donated items for our yard sale and auction, for those that give of their time, for those that purchased items and helped us raise money, and for those that unyieldingly give what is needed most: your support! THANK YOU!  I don’t want to list names because I will surely leave someone out! You have all been incredible!!!

I went to hang out with Keegan at school on Wednesday. It’s really sad I haven’t spent much time at Keegan’s school in the last 2 years because I was in school full-time and then have a baby that is now 14 months old! I figured I should take advantage of having my little brother at the house and spend a different day each week with Keegan so I can see what he’s doing at school. What a gift that was. The first thing we did is put him in the gait trainer. I got to see him walk like I have never before, he almost ran. He took off down the hallway faster than I could expect; I had to find someone to stop with him so I could run back to the classroom and get my camera. It was wonderful!

My video won't upload right now so here's a picture of him standing in the gait trainer

Here's keegan standing in the GT at a table playing with toys!

We have passed the point of no return (and are diligently trying to raise the last of the money we need)… We ARE going to Chicago!!!!

I put the word out that we were looking for an RV.

Thanks to everyone who sent a letter to Ellen, I wish my big news was that she was going to air our story. I am still praying for that one! So keep emailing her and sharing our story… If she hears enough about this Keegan kid they might start to wonder who he is!

We. Have. An. RV!!!!!!

One of Rick’s Sergeant majors is going to let us use his RV to drive to Chicago!!!!!!

!!!!!!!!!!!!!!!!!!!!!!!!!! I am SO EXCITED!!!!!!!!!!!!!!!!!!!!

(can you tell??)

I don’t have any of the specifics yet, and I am still praying like crazy we will get to use it and everything will come together… But I just can’t contain the excitement! The kids are thrilled! We are looking forward to travelling (half-way) across the country and going places we’ve never been! I cannot wait to share our adventure with you.  When we started this was such an unimaginable dream, so far away I wouldn’t even allow myself to picture it… We are just under two months away and I can see it happening.

&& last but not least for today’s blog full of surprises… We have a guest on our blog!

I am STILL trying desperately to talk this family into moving to Reno because we miss them WAY too MUCH! If they did my life would be almost complete J They are incredible friends, who were a huge support to us. We have so many wonderful memories of our families together.  I don’t think I would have survived living in Las Vegas (again) without them. We so seriously ridiculously MISS YOU!!! Anyway, all of that was just a ridiculously long introduction. I would like to introduce my dear friend Trista Day, who wrote this to share her experience with Keegan and our family…

The Miller/Lee Family

I’ve known Krystal since high school, about (geez I’m old) 14 years now, give or take.  We played sports together, attended TEACH classes together and pretty much were inseparable.  We lost contact for a brief couple of years, but when she came back she had just given birth to Keegan and Conner was a little tyke.  I remember the first time I saw that precious little boy.  He was so small and Krystal worried herself sick over not being able to pump enough to feed him.  She’s always been a fighter and I knew she would make it work no matter the cost.

Keegan has Septo-Optic Dysplasia, also known as de Morsier syndrome, a rare disease in which abnormalities in the brain cause disturbances in how the brain is formed and how the brain works.  It can include a slight loss of vision or complete blindness, growth hormone deficiency, seizures and a general lack of developmental milestones.

I can say with certainty after observing this family that being the parent to a special needs child is nothing like you think.  It wasn’t like anything I thought it would be.  It’s hard.  And when it isn’t hard, it’s not only frustrating, but extremely difficult.  I had no real experience with disability when I first met Keegan AKA Keewee and what I did have could not prepare me for the up’s and down’s this family would face.  Numerous hours spent in the hospital when he was sick, countless times they were in need of a trustworthy babysitter and couldn’t find one, hopes and dreams dashed when they found a new set-back to his development, and copious amounts of money spent just trying to get the education, medication and supplies he needed to survive.

They spend days sweating it out in the kitchen to make their own food products for Keegan because he can’t chew or swallow the way kids his age normally do.  They steam, puree and freeze cubes of fresh vegetables and fruits to add into already made containers of barley and oats.  When they’re not slaving away in the kitchen, they’re taking him to therapy appointments, getting him ready for school and preparing his meds for the day, all the while taking care of their 1 year old Cooper and their oldest son Conner.  Plus, Krystal miraculously makes spare time for baking, arts and crafts, reading, cleaning, cooking dinner, events/activities and hanging out with her friends/family while Rick is at work.

I remember babysitting Keegan overnight for the first time while Krystal and Rick went to deliver little Cooper.  Krystal meticulously and carefully prepared a binder of notes, special phone numbers and medications/amounts.  The list of do’s and don’ts, emergency contacts and medications were overwhelming.  We had to practice giving Keegan his growth hormone shots beforehand so we could make sure we knew what we were doing.  I remember thinking to myself, how do they do it?  It’s a task just to handle Keegan, yet they have two kids and one on the way.  Then I looked at his cute little face as he laughed when my husband tickled him and I just knew.  There isn’t an ounce of mom in me that wouldn’t fight for that kid, so I expected nothing less from Krystal and Rick.

No matter how many new problems they have to face, they’ll do it together, as a family so tight-knit that no tug on their string is going to unravel them.  They’ll keep fighting and striving to persevere, they’ll advocate for Keegan the best they can and they’ll stop at nothing to accomplish their goals.  This is the kind of family that everyone should strive to be: loving, caring, nurturing and good to the very core.  I’m so proud of what they’ve accomplished so far and how many positive things their advocacy can do.  Best of luck and love!

                                                                                      The Day Family