Monday, July 2, 2018

Autism and seizures. How a simple Wednesday changed our family dynamic. 

(Picture from that morning)
Wednesday May 30th was suppose to be a fun filled day leaving our kids exhausted and crawling into their beds full of giggles and amusement park rides still swirling in their heads. And probably a little whiny(let's be real). 
The reality was I took 4 kids(10yrs, 8yrs, 3yrs and 5 months old) to MOA by myself for their end of the year school field trip, and that ain't easy. Ethan was suppose to go to Valley Fair but it was cloudy and rainy out so he decided to join us inside at Nickelodeon Universe instead. Baby Mila was fussy off and on all day, Elijah and Ethan ran themselves ragged and Anna rode the same 4 rides over and over. Just before lunch time I got a call, one I had slightly expected and yet hoped wasn't coming. 
(My oldest son Elijah and I) 
(Reading about Aspbergers)

"Hi Crystal. This is Kim. Just wanted to let you know before we meet, so you have time to process, Elijah very much tested positive for autism. He's high functioning but we can see clearly where ASD is interfering with his ability to learn and interact." 
Much more was said on that call but not much stuck in my head. 

We had started Elijah in counseling by the suggestion of some friends because he's struggled so much. After our first intake session the counselor said "I would suggest getting him tested. I suspect he may have autism". And I nearly fell out of my chair. Autism?! What? How on earth could I have missed that for 10yrs?

I left the office confused but ready to prove her wrong. I dove into researching everything I could get my hands on. And within the first 24 hours I found my son amidst these confusing symptoms in Aspergers. Things that never made any sense to us about him and yet never caught us enough to look deeper. 

Things like repetitive sounds and words. Awkward posture and body movements. His epic ability to tell the truth, to a fault and even if it meant he was going to be punished. And yet his inability to see his role in making a situation worse. His oral fixation to suck or chew on anything he could get in his mouth, one sided conversations and obsessive love for sharks, legos and drawing. And how his friendships have died off the older he gets because when he was little everyone was friends with everyone. And he could make kids laugh. Now his friends are maturing, and he's not, so things that were once funny are now obnoxious/annoying/frustrating to them. And so much more. 

So while in that first week I knew in my heart we'd found our son, I hoped that I was being paranoid and the tests would come back inconclusive. That they would say, "nope. He's just a regular boy who likes to be defiant". 
Standing in the middle of the park that Wednesday, expecting the call I hoped wasn't coming, it felt like the world was spinning. I fought back tears as we said "OK, we will meet tomorrow to discuss this further". Tomorrow's meeting would never come. 

I hung up, shook it off, texted my sisters and simply said "pray for me. I can't think about it right now. We are suppose to have fun today". 

We ran around the park for the next several hours and the kids and I were beat. So we headed over to my friend Sarah's house to pick up Sheldon. He works for her husband and we are down to one car so we figured it would be easiest to meet there. 
I got there about half an hour before the men did so Sarah and I chatted casually. Baby Mila had felt a little warm that morning so I asked Sarah if she though she was warm as I was holding her in my lap. She came over and touched her and said "no, definitely not feverish. But she looks weird!". 

And as I glanced down I noticed her color was off and she wasn't moving. I called her name, "Mila...Mila?" Nothing. No movement whatsoever. 
So I turned her towards me and she was completely stiff. I lifted her in the air and gently shook her to get a response, "Mila?!". It didn't look like she was breathing so I blew in her face expecting the inhale reflex that baby's do when air hits them. Nothing. And as quickly as the thought, "she's choking" came to my brain she turned blue, slowly went limp with her eyes rolling backward.  

Then I panicked. I rolled her into my arms and sat up and called her name looking to see if she was breathing. Before I could decide on my own, she slowly faded back in and took some deep breaths and started moving. And then sweetly smiled at me. Sarah and I looked at each other, and I was like, "did you see that?! Did I just imagine that?!".  She goes, "yeah no, that was weird." But Mila was now interacting like nothing happened. Wiggling and smiling. So I thought, for sure I must be paranoid. Maybe I imagined her color fading. Maybe she just was so tired she fell asleep. And as we sat there trying to figure out what just happened we decided I should call the nurse line, just in case. 

After 20 minutes on the phone with them they suggest a trip to the ER. I wasn't sure it was that serious, still convinced I was paranoid. Sheldon walked in the door moments later clueless to what happened.  We rounded up the kids into the car and as we were pulling out of their driveway I turned to him and said, "we need to go to the ER. She's ok now, but Mila had a weird moment and I called her Dr's office, they said bring her in". He goes "WHAT?!!"

As we drove to the hospital I explained everything. I also said I doubt they'll say anything so just drop me and the baby off and you and the kids go get some dinner. 

As we walked into the ER Mila was giggly and happy. The nurse at the counter said laughingly, "Don't you just love when you show up to the ER and kids just bounce back like they are totally fine?! Follow me, let's go to triage". As we sat down and she asked me to explain, she interrupted my story and said, "did she look like that?" And I looked down at my sweet baby who was again frozen stiff and turning blue. Shocked, startled and afraid I began to cry and stifled out a "yes! Mila?!! Mila come on baby, take a breath!!" At that moment I had no idea she was having a seizure, all I knew was she wasn't breathing and my heart feared the absolute worst. 

The nurse jumped up and said "follow me!" She called something out to her colleagues that I didn't hear and we ran/walked to a room that became flooded with people. As I laid her down she slowly faded out for about 5 seconds and then just slowly came back and smiled sweetly at all of us.  
(staring off as her color fades)

And all I could muster to say was, "so I didn't imagine that?!" One of the nurses said "no hunny. I'm glad you brought her straight here". And there began a whole series of tests and a long 7 day hospital stay. 

Mila had 8 seizures in that first hospital within 2 hours, so we agreed on having her transferred to a hospital better able to handle seizure activity, one staffed with a neurologist. At 1030pm I took an ambulance with her downtown to the Minneapolis Masonic Children's Hospital. As I held my baby girl I was texting like crazy trying to get someone to go be with our other kids so Sheldon could come be with me. He was able to get there around midnight and We had barely been in the hospital room for two hours with multiple seizures when she had one that they couldn't get her oxygen back up. It dropped to 34% and even with a nasal cannula blowing oxygen in her face they couldn't get it above 50%. So we were moved to the pediatric ICU. 

At around 4am in the ICU, wired, tired and worried, we sat next to our sweet girl covered in wires; heart, oxygen Flo, oximeter, IV. They told us she couldn't eat until after they were able to do an MRI, so she was fussy and hungry. And we felt helpless. With my head leaned against Mila's bed I said slightly above a whisper, "I got the call today." Sheldon said "what call?"  I replied, "Elijah's officially been diagnosed with autism". He simply replied, "OK".  
(Daddy and her Granddad praying)

I got up, turned some worship music on and just let God saturate the atmosphere. 

The next 7 days all melted into one, practically no sleep, lots of seizures, many tests, trial medications and lots of unknowns. We shared most info through Facebook and tried keeping up with texts and messages. So many people were praying, one of the reason I absolutely love social media!

As the Dr's stood confused in our room multiple times, our faith strengthened. They said they didn't know why the meds weren't working. They couldn't figure her out. And they said the cyst they found in her brain will never go away. Sheldon and I looked at each other, smiling and said "Watch God". A friend reminded us, as we sat in the hospital room feeling weak and worried, about what we had shared with our church just three weeks before. 

God had spoken to Sheldon that this year was going to be the "Year of Miracles." That Sunday morning during our team prayer time we shared this with our Frontline crew. And we said, "buckle up! Cuz you can't have a miracle without an obstacle that man can't overcome!" Little did we know we'd be talking to ourselves. But isn't that how God works? Through us? 

So we have buckled up. We don't know the journey we have ahead of us. Autism and seizures, specifically Aspergers and infant epilepsy. Two worlds we know absolutely nothing about. But get this. Our baby girl Mila? 
Her name comes from the Spanish word Milagros. Can you guess what that means? MIRACLES. 


Leave a prayer request and we will pray for your miracle as well. Impossible Doesn't Stand A Chance!! 
(Many praying)
(Oldest, youngest)
(Mila, sweet as can be)

(the cyst-like spot)
(this is us)
 Thank you for all your prayers!

Tuesday, April 23, 2013

Grateful.... even for snow

Snow. Right now we dont need any other word to bring sighs, groans and slumped shoulders... just the word snow. We are so ready for spring, sunshine, warmth, signs of new life.... that the thought of another week in a winter freeze can be downright depressing. And its something that everyone relate to right now. Just yesterday I talked to at least 5 different strangers at the gym, and what did the conversation involve? Snow. All about snow and almost all grumbling. "Im so sick of snow", "April is almost over, what is this?!", "I cant wait for summer!", or the most common, "Im moving to Florida! No seriously, I really am!". Have you grumbled about it? I know I have, even if just a little. Last week during our Moms prayer group at school, we spent the first half hour talking about the weather, and then jokingly said that this was no longer a prayer group but a "Weather" therapy session. We all desperately crave warmth and sunshine, there's something about that happy feeling that it gives us. But in the midst of a snowy day, lets be grateful for other things.

I would have loved to wake up to a snow day with school cancelled, but I didnt. I would have love to have had my husband snowed in and have to work from home, but he wasnt. I would have loved to ignore the alarm clock and sleep in, but I couldnt. I could have complained about all of that, plus having to take our neighbors son to school on top of my own kids, but I didnt. And I really could have added a groaner to the fact that when I did drop off my neighbors son, another parent in that school backed into my van trying to get out of the parking lot. But I didnt.  I chose to have the peace only God brings. I chose to sing this morning to the kids, I chose to greet our neighbor warmly and with a huge hug. I chose to take in the absolute beauty of all the snow covered trees contrasting a bright blue sky. I chose to smile at the guy who hit me, look him in the eyes and tell him it was ok, that he was gonna have an amazing day and God bless him.

So I challenge you today. STOP IT. Stop complaining, stop grumbling, JUST STOP IT. Choose to see the good in your day. How do you want your day to go? Do you want it joyful, full of life and fun? Or moody, slow and long? Think about whats coming out of your mouth, or swirling around in your head and choose to make it positivity. Yeah I could have spent the morning in bed sleeping, but I got the chance to be a blessing to someone else in the midst of a cold "winter" day. Praise God for that!
Do you accept the challenge?

Philippians 2:14-15 "14 Do everything without complaining and arguing, 15 so that no one can criticize you. Live clean, innocent lives as children of God, shining like bright lights in a world full of crooked and perverse people."

Friday, February 1, 2013

Life is not pointless

My heart hurts. The emotions are so mixed. And although there is a joy indescribable for my dear friends gain, the pain of the loss of such a gem in this world literally takes my breath away.

But thats not what this post will be about. Not about the pain or loss, but about the example that an amazing, very young man left behind. I will NEVER forget the day Nick Reed came into my life.

In September of 2011, our brand new church plant hosted a booth at the North Central University church fair. In the sea of college students, our team handed out Ramen Noodle and talked to lots of new people. Most of them asked questions like, "What kind of worship do you have? What kind of message do you give? How many people attend? Where are you located? Do you have a youth group".

 But not Nick. As I greeted Nick, my first thought was, "Wow, He is way older than most of the people here." We talked for a good 15 minutes, which is incredible considering most of the conversations all morning had been about 30 seconds long. After explaining some of the history of how God called us to plant this new church, Nick said he was willing to help anyway he could. I asked him what areas he was good in and he replied, "Just give me a brush and Ill scrub the toilets and the bathrooms. I want to serve." Then He explained to me that he was sick of hearing of churches using all these gimmicks to get you to come, that He wanted to find a place and just serve. Then He promised to be there waiting at 745am on our first launch day of South Oaks. He met our team that day, and as He walked away all of us marveled at such an amazing guy. We talked about him all week long, prayed for him and at our next meeting told everyone all about this Nick guy. We even debated on his age, because there was something about him that was so much older than the other students.

On our first Sunday, September 18th, 2011, Nick was one of the first, if not the first person to arrive. Ready and waiting to help set up and tear down. And He came every Sunday after that, bringing even more people with him every week, even with a limp.... and then eventually crutches. He served with all his heart. We didnt even know right away what a talented musician he was, or his amazing healing from the first bout with cancer. But we didnt have to, we knew from the moment He walked up to that booth that He was a one of a kind guy, someone unique and powerful. Adding in all that incredible testimony just increased our respect for him. If it wasnt for Nick, I wouldnt have met the awesome Brandon, or the beautiful Jessi, or any of the other amazing NCU people who are now a part of my life. And all the way up to the point when He had to go back home from surgery, He set the example and the bar for truly living for Jesus Christ in our church. Even from his hospital bed this past September, he sent a thank you video to the church for our 1yr anniversary. He never gave up, through pain and trial, through the toughest parts of life, Nick plowed through. Even more amazing to find out that He was only 19 at the time, He carried a wisdom far beyond his years.

I remember one time walking out the door at the same time He was, and he was on crutches. I tried to hold the door open for him, and he laughed and said "Im not paralyzed, girls dont hold the door for guys." And he put his crutch up on the door and blocked it, till he could get in front of me to hold the door for me and my boys. I remember giggling with Jessi as she crushed on him, and watching the two of them exchange glances.... I even gave up a seat next to Nick and forced them to sit next to each other. This was obviously before anything became official between the two of them, and Im pretty sure I made them both blush and very uncomfortable. lol But Im glad I did.

The church, My husband and I and our boys, just like everyone else, poured massive hours into prayer for Nick. I am overjoyed that He is now healed, whole and in heaven.

I have never met someone like Him, I believe He was a real angel sent her to show us how to serve with everything we have. The last words he wrote show his heart, "The seeds we sow in this life will be the crops we reap after we die. See, our bodies may die and all the things we worked so hard to get will be equal to nothing. But our souls will live on........ Life is not pointless. So live like it has a point."

The heart, the passion, the love for God, the way he treated Jessi.... all examples to live by. We call him the Warrior Nick... and his is a story I will tell over and over again my whole life. The story of a man, an angel, a servant... whose time here we all feel was too short, but was designated with a mission by God. I know that the evening of January 31, 2013, Nick Reed heard the words, "Well done, my good and faithful servant."

The Beilke's love you Nick. Thank you for impacting our lives, by just being you. I am grateful to have met you.

1There is a time for everything,
and a season for every activity under heaven:
2a time to be born and a time to die,
a time to plant and a time to uproot,
3a time to kill and a time to heal,
a time to tear down and a time to build,
4a time to weep and a time to laugh,
a time to mourn and a time to dance,....
11He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end
Ecclesiastes 3:1-4, 11

Nick Reeds BLOG:

(Nick and the team at a babyshower)

Thursday, January 3, 2013

Do not grow weary in asking

My 5yr old son Elijah has already proven that He is quite prophetic. He has seen things, heard things and spoken things out that have happened. Its pretty incredible watching him grow up. Theres this silly, hyper, crazy little boy who is just like any other 5yr old, and then out of the blue He does something that make Sheldon and I take a step back and go, wow.

Two nights ago He had a dream that He remembered quite vividly. As far as I can remember, its the first time He has remembered a whole dream, and the night before was New Years Eve and we prayed special prayers over each of our children for 2013. He woke up slightly disturbed and told us all about it. He was in the ocean and a skeleton was teasing a shark. Well the shark ate up the whole skeleton and and spit out its bones and left. Thats it.

But the timing of the dream and the stuff in the dream is not coincidence. In the last week we have paid out over $1800 in vehicle repairs, and not one dime of it came from our personal pocket books. What we had need of, we prayed and the next day checks came in the mail. This van has been broken down since June! Would it have been nice to have it fixed before now? Sure! But God is always perfect in his timing, never late! We survived just fine with one car, it was tough and there was lots of switching, Sheldon taking the bus a two hour bus ride at 5am, and Elijah staying at school late, but even through the stretch and stress, we survived just fine. However, with our exchange student coming, we need the second vehicle, and God provided right on time for a situation we had given up on. Its so amazing that Sheldon and I have been totally in awe since last week. Then comes this dream.

To me the skeleton represents lack, starvation, emptiness, sickness. Well we have definitely struggled with sickness this month, and we have always been just under the cut for bills to income, even with the most basic bills you can have. But in all, we remain faithful to God and to giving to Him.

Now to the shark, He is the powerhouse of the ocean. He is the equivalent to the ocean, as what the lion is to land. He is fierce, Hes a hunter, and does not back down from attack. As He chews up and spits out the skeleton, to me it represents the destruction of lack and sickness.

For 2013, I claim that promise. Just as God has provided every cent needed to fix what the van, which we had given up on, He will provide for every need this year, as always. And I claim to stand as boldly as a shark in my walk with God. I will be bold, I will not back down in seeking and sharing Him, and I will fiercely love. 

'For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.“Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!" Matthew 7:8-11

Thursday, August 23, 2012

A fruitful Summer

Its been a long time since I posted an actual blog, I have had an amazing year so far! Definitely living up to its expectations!  When we launched with South Oaks Community Church, my husband and I had taken on the Men's & Women's Ministries. Well just this past spring we also took on Children's Ministries as well, merging them all together to create our Family Ministries! Its been such an exciting change, and we are growing in ways we never saw coming! 
God has truly been doing some amazing things! Back in June we were blessed to go on a week long Leadership conference with our Pastors, Cindy & Steve. What an INCREDIBLE experience! We did not come back to Minnesota the same! At the end of the amazing Dave Williams Leadership School we had a "graduation". We spent the evening in worship and prayer, praising God for everything He had done that week. I had sprained my ankle the weekend before, and that Thursday I was healed when one of their prayer warriors prayed for me, and not even for my ankle! I met some amazing people who I hope to keep in my life a very long time, and watched a girl with flat feet miraculously get arches! I learned so many things about honor and how to honor our leaders in the Godly way, I learned about Faith Goals, defeating fear, creating an atmosphere of praise and growth in our church and so much more! The coolest thing was that during the graduation evening the leaders kept saying "the portals of heaven have opened above Mt Hope church" which is where the conference was being held, the repeated it several times. I remember thinking it was kind of a strange saying, and I wasnt too sure about it. But when we walked out of the church that evening I remember looking at the clouds over the parking lot and thinking, WOW....just beautiful! The sun was setting the sky was a beautiful color, the clouds were these amazing shapes and they took my breath away.
 As I stood there gazing at the clouds I noticed that people in the parking lot were looking behind me with an even more amazed expression, so I turned around and there...coming right out of the middle of the building was a double rainbow. No rain anywhere in sight, none! Just this magnificent double promise that the portals of heaven had truly been opened by our intense praise and worship that evening. I wish I had my camera with me, but the cell phone photo will have to work as proof. Never underestimate God, He will always outdo your plans!

"And because of his glory and excellence, he has given us great and precious promises. These are the promises that enable you to share his divine nature and escape the world’s corruption caused by human desires." 2 Peter 1:4

Thursday, January 5, 2012


Well 2012 is here, and 2011 is gone.

Last year, at the beginning of 2011, our pastor challenged us to paint our canvasses. He handed out little paint brushes to everyone and said "2011 is a brand new year, God made the canvass, you paint the year!"
Well looking back on what my painting of what 2011 looks like, I am quite happy with it. There were lots of tough times, probably more than I have had in a long while.....but every one of them was worth it in the end.

With March's 21 day fast that led to some incredible awareness's, a free trip to Tennessee for a leadership conference, Sheldon's political campaign, leaving our old church and planting the new one, my boys a year older and the one started kindergarten, an amazing wedding season, leading my womens ministry and kick starting fun get togethers, leading my first bible studies, God providing new(used) vehicles, and sooo much more!
God really opened the door to some incredible opportunities that just cant be explained away.

2011, you have memories that will be tough to compete with, but with Gods help I go into 2012 with even higher expectations.

I expect tough times, they are learning experiences. I expect blessings, to be the giver and receiver. I expect expect to grow in ways I never knew I could even stretch. I expect to fall into an even deeper level of love for the almighty Father! I expect miracles, Gods hand is moving on this out for it!

Coming up we have a Men's Advance, a Women's Retreat, a Marriage Weekend, a monthly couples Date Night, tons of different studies and social groups to get connected in and lots of worship!
And on top of all that I get to witness my sister marry the love of her life, who we already call our brother.

2012, I have expectations of you. Instead of making resolutions that will be broken shortly after making them, maybe you should have expectations.  What are your expectations?

I will bless those who bless you,
      And I will curse him who curses you;
      And in you all the families of the earth shall be blessed.”Genesis 12:3

Sunday, September 25, 2011

Gods Timing

People call a lot of things coincidences, Christians tend to call them GODinstances. Well tonight I had a Godinstance. 

About 20 minutes before we put the boys to bed, we found a really nice DVD shelf on craigslist for super cheap right here in Lakeville. So I ask Sheldon to go buy it, and He does. So instead of putting the boys to bed, I decide to wait for Him to come back home. While I'm waiting, I get the urge to let the boys run off any last bits of energy outside. 
So we put the shoes and socks on, jackets too because its so chilly outside and out we go! 
The boys take off running up and down our shared driveway in our town-home community. Laughing, giggling, screaming and just plain running like maniacs. By the time we went inside they were covered in an icy sweat.
But just a few minutes after we went outside, I look over and my neighbors little girls came running into the street. And a few things are quite odd. 
For one, they are the 2yrs old & 3yrs old(cutest little things EVER!) and they are alone. I keep watching as they come closer to me to see if a parent is coming out after them.
Second thing odd is that neither is dressed.... the youngest had on a diaper and a shirt, and the older sister was wearing nothing but pants. And when I mean nothing, I mean nothing. No shoes, no socks, no sweaters, nothing. 

So I say to these precious little girls "hi, wheres your mommy?" And I get a blank stare from both. 
So I ask, "Wheres your daddy" 
All the while looking around to see if there is anyone around. Nothing, and nobody. And these girls are NEVER without a parent. As I am trying to talk to them a car passes us and I usher them out of the street to safety.
I ask again "Hunny, where is your mommy?" And the older sister just shrugs. I say "Are you cold" (Now mind you I am in a sweater and I'm cold. And the reply is another shrug of the shoulders. 
By this point I realize that their parents probably don't realize they are I tell them to follow me as I lead them back to their house. And they obediently follow. Another neighbor comes out of her garage looking quite concerned, and before either of us got a word out the mother of these girls come flying out of the house calling the girls frantically. I call out to her "Don't worry, I have them! They are right here!" 
I saw an entire range of emotions play across her face in matter of seconds and she explains that they were suppose to be in bed and when they started calling her she hid so they couldn't find her. And somehow they managed to sneak out of the house into the garage, and because their garage door was cracked they crawled under the door and got out. She never heard them get out of bed though, and when she went to check on them they were gone. As she was telling me this I could see she was torn between relief, fear, embarrassment, anger, frustration and gratefulness to at least find them safe....but she gently hugged the girls and took them home, and I was grateful I had been there.
The thing that struck me though is that I had absolutely no intention whatsoever to take the boys outside. If it hadnt been for finding that DVD shelf, and Sheldon running out to buy it then the boys would have been put to bed. And we wouldn't have been there to help the girls.
Gods timing is immaculate. Only He can set up divine interventions like that. Only He makes you late for work so you miss that car accident, or allows you to get sick you so miss that flight that crashed, or gives you the nudge to call someone right when they need it, or while on a prayer walk puts you in the path of someones home who you just by chance know and they desperately need prayer, or urges me to take my boys outside to burn off energy and find these baby girls.
Lord I am so grateful that your timing is never off, its always right on time. I am grateful for Godinstances. 

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. ~ Isaiah 55:8-9