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| (Picture from that morning) |
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.
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| (My oldest son Elijah and I) |
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| (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.
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".
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.
THIS IS THE YEAR OF MIRACLES. AMEN.
Leave a prayer request and we will pray for your miracle as well. Impossible Doesn't Stand A Chance!!
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?
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.
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.
THIS IS THE YEAR OF MIRACLES. AMEN.
Leave a prayer request and we will pray for your miracle as well. Impossible Doesn't Stand A Chance!!
 |
| (Many praying) |
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| (Oldest, youngest) |
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| (Mila, sweet as can be) |
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| (the cyst-like spot) |
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| (this is us) |
Thank you for all your prayers!
Crystal, I just wanted you to know that I read your blog. You have such a beautiful way of writing (you always have).
ReplyDeleteI am just one more person that will be praying for you and your beautiful children..However, your light will shine even brighter because of the things you will overcome.
Love you.