Trials

I write this with a very heavy heart so please forgive me if this leaves you feeling weighed down too…

My prayer… Dear God, please use this opportunity to bring all of us closer to you… Shower us with peace and grace. Help me trust you and the plans you have for me. I feel you working and I am desperately trying not to worry and to leave everything in your hands. I cannot see the whole picture, and there are so many things I do not have answers for. I will trust you to lead all of us, and trust in your plans.

We were never promised that this life would be easy.  

Life. Is. Hard.

We live in a broken word, full of broken people. So I imagine every one of you who reads this has been to the place where you wish you could leave. Where you are filled with agony, ache with sadness, desperation, and all you want is make it stop.

Right now I would like to thank you for reconsidering. It is my hope that you had a long talk with God, and let him intervene in your life.

Fear not, for I am with you;

Be not dismayed, for I am your God.

I will strengthen you,

Yes, I will help you,

I will uphold you with my righteous hand

Isaiah 41:10

It truly breaks my heart to know people are hurting. Hurting so deeply it blocks out any light, takes away all hope.

I think we all face these moments, maybe more than once. I can admit there have been many occasions I’ve been ready to give up and wish I could go home. I’ve even been to the point I don’t care about “home” and just want to be done. It usually doesn’t take long for me to reconsider. Now I only have to think of my children and know that I can’t leave. Oh but if I didn’t have kids… I think of my family, my friends. I think of the job God has for me here. Being the person I am I could not leave that unfinished.

 I know I have a calling to do big things. I think that part of getting there has been going through some tough times.

I think you are defined by how you handle those tough situations. &&There will be many trials… How are YOU going to handle them? Will you stand up and face them, or crumble? Will you call upon God? Or turn your back to him? Will you fight? Or will you give up?

I choose to face it, always fighting. With even more strength now that I allow God to work through me.  I will also always have HOPE. Sometimes I might have to dig down deep to find it, but it’s always there.

This renewed faith has given me a whole new outlook… Normally I would have turned inward looking for strength, tried solving things myself. Today I immediately turned to God; put all of this worry, heartache, uncertainty, stress… in his hands! That is not easy for me so I am still feeling slightly nauseous. The little voice in my ear is telling me to panic and put my hands back on the wheel.

I don’t know what is to come… I am doing my best to exercise faith.

Moving Forward

Today my sweet Keegan graduated from Kindergarten!! I wasn’t sure how I would feel today, but I really haven’t thought about it much, I am like a horse with blinders on right now, focusing on the road ahead.

We tried to get there super early because we brought some yummy cake pops for his graduation. Thursdays are when Keegan’s class rides horses but I didn’t think they would today; as we got there Barb asked if we wanted to take Keegan to ride. I haven’t been able to go to the school and see Keegan ride, and I was really upset about it actually.  I haven’t been to his school much at all this year. Between fundraising, and my 15 month old monster I haven’t had many opportunities. Not to mention the fact that when I used to go to any of Keegan’s school’s functions I was completely overwhelmed. I become incredibly sad when I think of a school full of children with all sorts of conditions, disorders, diagnosis, and different degrees of developmental delay. I think of all of those children’s families, I multiply the heartache I feel and it is encumbering. Then I look at the amazing people who put all of their hearts into working with these kids, and the love is equally staggering. I don’t know if that should or will go away. Being there reminds me to be humble, and that there are others out there suffering just as deeply if not more than I do.

I was elated to get to watch Keegan ride the horse and capture some photos. It was awesome to watch him and his classmates. My little monster even got to hop on and go for a ride!  He is the youngest kid to ride horses at Keegan’s school. The lovely lady told me we made her day. She has no idea that she made my day!

 

By the time we got back to the classroom it was time to start the graduation ceremony. Then it started to sink in… Watching the kids in their caps and gowns, listening to the choir sing, and Keegan’s teacher speak… I thought about what graduating Kindergarten means. It means moving to first grade, eating lunch in the cafeteria, and all that comes with going to school for a full day. It also means you are well on your way to reading and writing proficiently, you’ve learned the logistics of being in a classroom setting and are moving forward.  Those little kids are one step closer to graduating High School. I started to think I could easily be upset that that our experience with graduating Kindergarten is so different from that. Sometimes it doesn’t feel like we are moving forward at all. Keegan is nowhere near learning to read… He doesn’t even talk! I used to get really upset when I compared Keegan to other children his age. I have written about my struggles with accepting that Keegan isn’t going to function at the same level as his peers (at least not today, I am not limiting him and do not know what the future holds). I don’t expect him to wake up tomorrow and start walking and talking much less reading and writing. Normally that thought crushed me. That one simple thought. How could three words be so painful? Keegan isn’t normal. It always left me utterly distraught. I am working so hard to try and make it so, and it isn’t happening, I am failing.

Thankfully that isn’t where my thoughts went. God is working on my heart; while it is still painful, and still sometimes excruciating to think about I am starting to be okay with that fact. I don’t think it is in God’s plan for Keegan to be “normal,” so I am going to have to try and accept that it is out of my hands. I know he is using Keegan and our family, and there is a purpose. I believe part of that purpose is to share our story, our struggles, and the hope we have with others.

If you have a child diagnosed with Septo-Optic Dysplasia, or you have a child with special needs; maybe seizures, eating issues, severe developmental delays. Anything similar or different to what we’ve gone through I truly hope you know:

You. are NOT. alone.

I often felt alone, and I am so happy to finally be in a place where I know that I am not. I know that even when I did not acknowledge him, God was on my side.  So many things have changed since I opened my heart back up to him, and started to allow him to work in my life. I have gained support from countless others in ways I would never expect, and I know that I am never alone in this battle.  It is my deepest hope that you will know that you aren’t alone! Keep fighting for your children! There is a reason for everything.

Anyway back to graduation, rather than sink into despair I was filled with love. Keegan’s teacher is retiring; today was her last day. Not only were the kids moving up to first grade, an amazing teacher is leaving. I am excited for her, wish her a relaxing retirement! She has been such a blessing in so many people’s lives. I pray the school finds someone equally amazing to try to fill those shoes. During the graduation ceremony she recited a poem that she tweaked to fit this occasion that really hit home:

A Hundred Years From Now

… It will not matter how much money was in my piggy bank,

What kind of playhouse I played in,

Or the kind of trike I pedaled.

But the world may be a little better,

Because I was important in the life of a teacher.

She proceeded to tell everyone how much she’s learned from all the kids she’s had the pleasure of working with over the last 30 years.

I don’t think there was a dry eye in that room. The original poem is almost as good, it has the same sentiment. It encourages you to really examine what matters in life. 

I thought about how lucky these kids are to go to a school where they get to ride horses, and go swimming! They are so fortunate to be in an environment where people do everything possible to give them more than a normal life. I never really thought of Keegan as lucky, or blessed, or fortunate. However you choose to say it. That was kind of a revelation today.

I am thankful for the amazing teachers, aids, volunteers, and staff. 

Picollo is truly a special place!

All of this brought to my mind something I heard in a teaching this week. Forgive me for not having a direct quote or the scripture that went with it. I was not being very studious. Instead of taking notes I was cutting out felt to make angry birds masks for the boys’ bird-day party this weekend. Anyway the teaching was by John Piper and he said something along the lines of: By faith in his grace we get the help and he gets the glory.  I just want to thank God for his grace and give him the glory for all of these amazing things happening! I know that if I weren't following him I would not be in this amazing place.

Beginning a walk in Faith

I haven't had much time to write anything... I wish I could write on a regular basis but I do it as it comes to me and when I can sit down and keep a thought long enough to type it out.

I find myself daydreaming about the blog post I will write after the convention! I can't wait to share our journey with everyone! The kids are super excited about driving in an RV and visiting places they've never been... We just can't wait!!!

Many of you know how much I love Reno, for those of you who do not... I LOVE RENO! When we had to move away I left kicking and screaming... I was elated when we were finally able to move back. I have always boasted how beautiful it is here. Yes the mountains and landscape are breathtaking... The people are equally beautiful! There is a strong sense of community here, and I continue to be amazed by how supportive and generous everyone is.

When we first started this fundraiser I often thought people wouldn't even care to hear what I have to say.... I'm just a one person. I’m nobody special. Just a mom, raising my children to be the best they can.  At the same time I felt God tugging at my heart to share what we’ve gone through in the past 6 years.

With that I feel I must share some of what lead me to this place…. I am sure many of you are wondering.

Many years ago I stepped away from my relationship with God. I looked around and couldn’t see him in my life anywhere. I listened to my Christian friends talk about their walk with God, and I didn’t feel any of the things they felt. I didn’t see, hear, or feel God.  I was already in a very dark place, so susceptible to a whispering in my ear that God was a fairytale. I decided I was an adult and I no longer believed in fairytales… All the other ones I believed in turned out to be make believe. My “perfect” family broke apart exposing ugly truths. What I thought was my one true love, turned out to be a nightmare. Everywhere I turned things were not what they seemed. I was left a single mom with a 3 year old son and a newborn baby boy with problems I never expected. If there was a God he was failing me, so I dumped him and took matters into my own hands. I thought I was doing the right thing, taking responsibility and taking control of my life. I cautiously waited for lighting to strike me, or something horrible to happen. It didn’t. So I assumed I must be right, God isn’t real. I went on that way for quite a while. I met and married my husband, had another beautiful baby boy. There were plenty of bumps and pot holes in the road but I dealt with everything and kept moving forward. Life is not a smooth and silky paved road that we glide down effortlessly.

I’ve only recently begun a walk in new faith, and I look back and see things so much differently. I am thankful for a God that allows me to make mistakes, and patiently waited for me… All the While He continued to protect me from harm; standing beside me quietly still present in my life. I couldn’t understand unconditional love like that.

So many incredible things have happened since then, and I truly hear God speaking to me and see him working in my life. One of these days I will sit down and write all about it but it will take longer than I have at the moment.

That is why I began and continue to work so hard with this fundraiser and our efforts of sharing Hope. There have been numerous times I feel overwhelmed and start to think I’m not cut out for all of this… Every single time something happens to remind me I’m on the right path.

So what’s going on now…

I've been hard at work putting together our next event... Here's the flier with the info

I am so excited that A Salon 7 is hosting this event and have welcomed up like family! I love meeting beautiful people with kind hearts.

Who's coming down to get all prettied up?? The lovely ladies volunteering their time and expertise will be cutting or styling hair and doing mini mani's galore!

We will also have a Bake Sale with TONS of goodies from Sweet Treats for Keegan and other sweet bakers!

Someone will be making drinks, and I hear Sangria is on the list! We may even have some Sweet Tea and Lemonade.

We also have St Lawrence Pizza Co. and Kenji’s Food Truck coming out with their tasty cuisines.

We are trying to get our story in the news and on the radio… & still campaigning to get on Ellen’s show. So keep calling and writing them J

All in all this looks to be one awesome birthday party for Keegan!

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