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

Darkness always creeps in

     I guess it is slightly reassuring knowing that while I am here watching the pieces of this puzzle called life come together… There is a divine plan. I get frustrated with those center pieces, they don’t give you any idea where things are going. I haven’t put many intricate puzzles together, but I like to see the picture and work from the outside in.

Well God sees the picture, and puts the puzzle together in his own perfect order. To me, it looks confusing: lots of pieces floating in space that aren’t connected and I cannot make out the full picture. I get frustrated and wonder why we can’t do this puzzle in a more logical order, or can I just see the picture so I know what’s going on here.

I know I can get through the tunnel if I see there’s light at the end, and many days I have to fight to get myself up instead of staying curled up in a ball because it’s too dark in here.

Maybe that’s because my perspective is off and I am trying to look at the big picture, which I am not intended to understand, yet. I believe one day it will all be crystal clear, and I will see all the connections and understand why things happened as they did, and how all the pieces fit perfectly together.

My instinct is to cram those pieces together, like a toddler, make them fit, cut off all the corners whatever you have to do.

Oh man, could you imagine trying to put the puzzle together backwards? Where you can’t see any of the picture? I guess it could be worse!


Enough ramblings, here's what's going on...

On one hand, things have been going pretty well, incredibly even. We raised a ton of money at our yard sale. The amount was astounding to me, far beyond my wildest expectations! It has given me the oomph to keep moving forward, and the faith that things will work out. I just have to let go of the reins and let God do things the way he has planned. It’s easier said than done, I am a control freak after all.

On the other hand, I am struggling with a few things all at once. Keegan got sick almost two months ago, got better, got sick again, and got better again. But he isn’t eating. Normally he will not eat well for a short amount of time before and after he gets sick. He hasn’t eaten normally in about two months. This has been torture, torture for Keegan, torture for me. We are at our wits end. Then I was bold and asked questions when we saw the neurologist that I have been afraid to ask. I didn’t really get any clear answers, nor did I get any hope.

Keegan is severely developmentally delayed. I would say his developmental age ranges from six to twelve months, give or take. I always thought when he was two that being a year behind wasn’t that bad. When he was three, he was only two or so years behind. When he was four, he was only three years behind. What will it matter when he is thirty if he is three or four years behind anyway? Well, he will be six in June, and that gap is growing wider every year.

Do I push harder?

Get him in as many therapies as many days and hours possible?

Will that help bridge this gap?

Thus far… no.

So I asked the doctor if there was any way to know what he could be capable of, and what he simply isn’t going to be able to do. So far nobody has limited him in any way, aside from saying he is completely  blind (you can read about that in our previous blog). I am starting to wonder if that is because they didn’t think I could handle the news. I always expected he would be walking and talking by now. Every year around his birthday, life is a little hard for me. I cross another year off the list, assess the damage, realize what Keegan “should” be doing at this age that he doesn’t, stare at the huge gap. I’ve never seen the Grand Canyon but I am desperately fighting to keep that gap smaller than the Grand Canyon.

I am not a negative person. I can find a positive in just about any situation. So if you have never experienced this don’t take it the wrong way. I try just as desperately to appreciate the positives, to recognize the small gains. I think anyone with kids can admit they have huge dreams for them. I can’t seem to let go of those dreams for Keegan. 

 What’s the alternative?

I don’t know if I am supposed to keep fighting. I don’t know how to not fight. Because I will fight until I am gasping for air and collapse to the ground.

 I am really stubborn.

If you are keeping an inventory, mark that one in large letters. The idea of giving up those dreams is even more heartbreaking than the thought of them not coming true, in this life.

It’s a lot of pressure to be the only person who can care for him. Keegan’s biological dad isn’t actively involved in his life, and has never taken any great interest in him. My husband, his dad, loves him and is amazingly supportive. He helps out, as do some family and friends. I don’t want to take away from that in any way.  I don’t believe anyone else feels the kind of pressure I do, so I am only speaking from my experience. I could not leave him in the (permanent) care of someone else, nobody else is going to care about him the way that I do.  I take him to his appointments. I sit with him every night he is in the hospital. I spend hours making his food. There are many things I am able to let others do, I just don’t believe anyone would be able to be me. So it’s not like I can just give up.

My biggest fear is that nothing will change. I wish I could fast forward and see where things are going. I don’t feel like I can continue on this way for years on end with no change.

What’s the purpose in that?

The one thing I can find comfort in is that one day he will be able to do all of these things he isn’t able to. One day he will see, and speak, and walk, and EVERYTHING.

That doesn’t always make things easier right here and now. That doesn’t give me any answers either.

Anyway, back to our appointment; the neurologist recommended we see someone where they have had the opportunity to track conditions like his for many years. We are looking to go to UCSF. He thinks they might be able to do more tests to give us an idea of what Keegan may be capable of, or at least have more information. He also urged us to attend the convention In Chicago, in hopes of finding some answers. I want answers, I don’t just want to give him some medication and dope him up. I don’t want to see doctors every three months just to say hello and get a prescription. I would love to see a doctor who can tell me something instead of always telling them everything.

I am also getting a referral to see a GI doctor, which terrifies me. I have been fighting to keep Keegan from needing a G-tube since he was born. We’ve narrowly escaped its clutches so many times. I started to think we were all clear but it keeps sneaking back up on me. Keegan was scheduled to have surgery for a G-tube when he was about two weeks old. I went to visit Keegan the day of his planned surgery and the Endocrinologist came during her rounds and told them to wait. Lab results came back that his growth hormones were low. She recommended he start GH replacement, and that many times she’s seen kids perk up and eat. It would take a few days to get the medicine, I would have to be trained to give him the injection, and it should start to work in a few days. So I held off on the surgery, and he did start eating more. Eventually they took the tube out of his nose, and we were released! I was so relieved! I never thought I would hear G-tube again! Since then it’s been mentioned several times. Every time I hunker down and start beefing up Keegan’s meals with calories and supplement with as much pediasure as we can. I have been waging war against the G-tube for almost six years and I feel defeated to even consider it.  The alternative is getting too ugly.

Keegan Will. Not. Eat. Rather Keegan Will. Not. Eat. Well.

He will usually eat at least one meal, or maybe two halves, or a few bites each time you try. Usually. There are also the days where he flat out Will. Not. Eat. Period.

I felt like I would get hauled away for child abuse because I have to hold his arms down, plug his nose, hope he would unclench his jaw and open his mouth just a tiny bit so I could force a spoonful of food in. Then I have to cover his mouth so he can’t spit it back out. All of this just to get his medicine in. During which, he’s thrashing and crying and yelling at me. I am yelling (in my head) and crying and reasoning and pleading with him.

If he doesn’t get his medications he will end up in the hospital again, or worse.

So I don’t really have a choice, but I feel like a horrible mother.

 This happens every day. It’s been pretty miserable around meal times, and I get so anxious. I don’t even want to feed him anymore. I had a great conversation with friends who have been through a similar situation and chose to have the surgery. They said it was a very positive experience for them; they had many of the same concerns and feelings I do. They were also very happy once they did, and it was such a relief. So I am cautiously considering it, getting more information, and trying to be open-minded. I have to change my perception of this evil lurking G-tube, because it might just be what rescues us from this dark place.

I am glad we held out for as long as we did. I don’t think doing it any of the other times was for the right reasons. Most of the time all we needed was a little creativity and a lot of diligence to get Keegan to gain some weight. The other big excuse was that we can get pediasure through our insurance with a G-tube, but cannot without one. Pediasure gets pretty costly when you have three or more a day! That whole bit really infuriates me! We are at a point now where there isn’t any amount of creativity or hard work that will solve this.

I am optimistically hoping things will calm down and the rest of the journey to Chicago can be smooth… At least on Keegan’s end.

As always we appreciate your thoughts and prayers.

Yard Sale

If you are in Reno/Sparks we hope to see you at our yard sale this weekend! We've had some awesome people donate items they didn't want or need anymore. All of the proceeds go towards ourI am hoping to move that little thermometer on our page up a bit after this weekend... That would be the greatest Mother's day gift of all! I will be super busy slaving baking away in the kitchen so we have goodies from Sweet Treats for Keegan at the Yard Sale, as well as the over 4 dozen I have orders for that my Momma will deliver when they return home to California this Sunday... Busy Times ahead! Pray for us :)

Flier and News

We have a flier for you to share with anyone and everyone!!! You can print it in color or in grey-scale! We are printing it in grey-scale on gold paper and will be distributing it as much as possible! Help us get people connected with what we are doing...

BTW what are we doing you ask?? So much my head is spinning! I won't bog this down with everything that is going on; instead here's what's coming up!

We received a scholarship that will cover some of the expenses for our trip... Thank you MAGIC! Our little thermometer is rising, slowly but surely!

We are baking like crazy for Sweet Treats for Keegan (ST4K) and trying to get that ball rolling. We will be available for custom orders for your parties potlucks and such. We may even be out and about in the future so be on the lookout! 

We are having a yard sale this weekend, all the proceeds will go to our fundraiser! The kids are setting up a lemonade stand and we will have treats from ST4K for sale as well! The best Mother's day gift I can ask for is for this event to be a success and to share our story with others!

We have a big auction coming up on Our Facebook page, if you haven't liked it yet please do! That is the best place to get up to date information and to what we have available... I am pretty excited about this event, because the people who have donated are so kind the items are sentimental to me and I am looking forward to them joining homes of others who are supporting us in the endeavor!

Without further ado, here is our flyer!