It was a beautiful evening at our house in Washington. All was right. I was walking down our dim hallway to take a shower with pajamas in hand. I had barely placed my hand on the door knob when I heard my mom call my name with the sense of absolute terror in her voice. I dropped my clothes and ran towards her voice crying out "oh God" as if she didn't know what to pray. I ran into the kitchen to see my few months old baby brother, Haden, limp in my mothers arms with his eyes starring wide and with the color of blue around his lips. My mom cried out, "Call 911!". I frantically grabbed the phone and called 911 with my voice and hands shaking. The night faded away with paramedics leaving as we were left with a mystery that night as to what happened to baby Haden. Through testing and doctor appointments the results were positive. Haden is epileptic.
I will never forget my baby brothers face as he had his first seizure.
Psalm 139:7-10
"7 Whither shall I go from thy spirit? or whither shall I flee from thy presence?
8 If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there.
9 If I take the wings of the morning, and dwell in the uttermost parts of the sea;
10 Even there shall thy hand lead me, and thy right hand shall hold me."
This a journey of autism, epilepsy and the doctor's song.
I can't even go on to describe all that my parents have been through and the hard decisions they have had to face. Through the years Haden grew to be such a joy and wonderful addition to our family. For a while he didn't seem to have much seizures and when he did we knew what to do. The doctor did find an "abnormality" on his brain. Dark hair grows right where the abnormality is located. They told us that they were unsure if its scar tissue or a tumor in the making so, we wait and continue to monitor its growth through his scanning's.
Through his toddler years my mom started having suspicions of Haden's behavior and progress. My mom researched and she came to the conclusion that Haden was autistic. We had him evaluated and sure enough, he was. Haden's autism has added to our many new learning curbs due to autism being so different for every child. Haden went through phases such as particular foods he would eat and limiting our choices for his diet. He LOVES any kind of construction sign and caution cone. He used to carry around a caution cone as a child would carry a teddy bear. He doesn't know a stranger. He loves to give hugs. He is an animal whisperer. It's as if animals know there is something different about him. He loves music and playing the piano. Haden loves to take videos and show them to his friends and guests(while we are nervous as to what he has filmed and who he is showing it to). Haden will drop to the ground and close his eyes if he doesn't want to do what you have asked of him. There is many ups and downs to it all, but there is joy, smiles and good laughs.
Last year began the nightmares that were coming true.
My mom woke me up to paramedics walking inside our home early in the morning.
Haden started having seizures that were not ones he would usually have. Haden kept going in and out of seizures and they wouldn't stop. They took him to the hospital while I grabbed things my mom would need and followed after in my car. Sitting in the ER waiting to hear back as to what was happening and if they were able to stabilize Haden's seizures. Dad walking in from work to head to the back with my mom and Haden. It's maybe 5:30am. The only way they were able to stop Haden's seizures was through putting him into an induced coma. I was finally able to come back. To see my mom crying as Haden is pretty much on life support as he is in an induced coma was hard. The doctor's did the best they could, but informed us that they will not be much help in the area of epilepsy. Haden was flown by helicopter to Loma Linda. By then all of us as family were in the waiting room awaiting the news from the doctor. I can tell you as we sat there in the waiting room we were able to pray, trust, and we all had perfect peace in knowing it was all going to work out. We knew God was in control. When I went in the room to see Haden I could hear a familiar song in the background.... it was a Christian song! They had a Christian radio station playing in Haden's room as he was in his coma. That was very special to me and another reminder that God was there with us.
They were able to bring Haden out of his induced coma with no complications. He wasn't having seizures as he woke up and when he did have seizures later on they were able to stabilize them.
Loma Linda released Haden after a couple of days of testing and making sure he had the right medication.
All was well again for a while. We knew and prayed that God would give direction on what we should do because we knew it was only a matter of time before Haden would have a big seizure episode again.
Sure enough, he did.
We were going back into Disneyland for the second time that day while the younger children stayed back at the hotel with mom. We ate dinner there and on our way to a ride we all received a group text that Haden was having some longer seizures. My mom gave Haden his emergency seizure medication. We started running back and met mom on the street as she was driving in the van. We went straight to the orange county hospital emergency room as a family. Once Haden was settled in we got everyone settled at the hotel and dad I went back around 1am. It was a long night. I ended up going back to the hotel, because it was crowded in the ER. They ended up transferring Haden to CHOC(Children's Hospital of Orange County). There we found out that they specialize with epilepsy..... in fact, one of the best. They also were so wonderful with understanding Haden's autism. They were all so friendly as Haden stayed and had some testing done. A doctor from CHOC became Haden's primary doctor. It was all so divine as CHOC supported our family and there is an atmosphere there that I can't explain. A feeling of knowing we were right where we needed to be. For Haden to have a bigger seizure only miles away from CHOC was a blessing in disguise.
Brain Surgery.
I received news during work that there's a possibility that Haden might need brain surgery. My stomach turned as I heard those words. I stepped away to somewhere private to talk to God and cry, but in that moment I remembered that the safest place to be is in the center of God's will. I asked God to give me a special peace about trusting His plan for Haden. God did. God gave my parents a special peace also. It's times like this when you can't bear the thought that your baby brother will have to go through an extensive brain surgery that God shows His love and reminds you that He is right there with you. It's times like this when you see how loving God truly is and the peace He gives so freely. He's our heavenly father and we can cry out to Him at anytime.
The Doctor's Song.
Haden has a tablet that he carries around and plays music from Hailey's playlist. There is this one song in particular that he plays over and over. He calls it "the doctors song". He says that it plays at the "doctor's". It just hit me one day. I remembered. There was Christian music playing at Loma Linda when he was in an induced coma, so much emotion flooded my soul as I read the lyrics from Haden's perspective.
Called Me Higher by All Sons & Daughters
"I could just sit
I could just sit and wait for all Your goodness
Hope to feel Your presence
And I could just stay
I could just stay right where I am and hope to feel You
Hope to feel something again
In this moment I realized that God has called all of us higher and deeper than just a
mediocre Christian life. God has a higher calling for all of us.
God has a higher calling for Haden.
God wants to bring us into a deeper relationship with Him. He wants us to show others HIS comfort and the peace HE bestows. He is worthy of our Praise, so lets glorify and honor Him. He loves you SO much.
Through all the trials, temptations, heart break, fear....God wants to show us that HE is enough and that HE is there with us.
Go where God leads you. He promises that He will be with you.
Psalm 139:7-10
"7 Whither shall I go from thy spirit? or whither shall I flee from thy presence?
8 If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there.
9 If I take the wings of the morning, and dwell in the uttermost parts of the sea;
10 Even there shall thy hand lead me, and thy right hand shall hold me."
Update on Haden.
It has now been months later since we received the news. Through extensive tests, scanning's, and a conference with four of the finest Neurologists and Neurosurgeon.....
Haden will be having brain surgery. God has been preparing my parents through the months of waiting to receive this answer. An answer we were ready to hear, thanks to God. The miracle of all of this is the possibility of this abnormality being where the seizures are coming from. If that is the case, Haden will have that removed in order to have no more seizures! Please pray for Haden and this procedure. It is going to be extensive. If you would like a thorough picture of what the brain surgery will look like and the details involved.... You can click on the link I have down below for my mom's updated post.
momoftenkids.blogspot.com
For God's Glory,
Mackenzie Knouf
Philippians 3:10
"That I may know him, and the power of his resurrection, and the fellowship of his sufferings, being made conformable unto his death;"
I will never forget my baby brothers face as he had his first seizure.
Psalm 139:7-10
"7 Whither shall I go from thy spirit? or whither shall I flee from thy presence?
8 If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there.
9 If I take the wings of the morning, and dwell in the uttermost parts of the sea;
10 Even there shall thy hand lead me, and thy right hand shall hold me."
This a journey of autism, epilepsy and the doctor's song.
I can't even go on to describe all that my parents have been through and the hard decisions they have had to face. Through the years Haden grew to be such a joy and wonderful addition to our family. For a while he didn't seem to have much seizures and when he did we knew what to do. The doctor did find an "abnormality" on his brain. Dark hair grows right where the abnormality is located. They told us that they were unsure if its scar tissue or a tumor in the making so, we wait and continue to monitor its growth through his scanning's.
Through his toddler years my mom started having suspicions of Haden's behavior and progress. My mom researched and she came to the conclusion that Haden was autistic. We had him evaluated and sure enough, he was. Haden's autism has added to our many new learning curbs due to autism being so different for every child. Haden went through phases such as particular foods he would eat and limiting our choices for his diet. He LOVES any kind of construction sign and caution cone. He used to carry around a caution cone as a child would carry a teddy bear. He doesn't know a stranger. He loves to give hugs. He is an animal whisperer. It's as if animals know there is something different about him. He loves music and playing the piano. Haden loves to take videos and show them to his friends and guests(while we are nervous as to what he has filmed and who he is showing it to). Haden will drop to the ground and close his eyes if he doesn't want to do what you have asked of him. There is many ups and downs to it all, but there is joy, smiles and good laughs.
Last year began the nightmares that were coming true.
My mom woke me up to paramedics walking inside our home early in the morning.
Haden started having seizures that were not ones he would usually have. Haden kept going in and out of seizures and they wouldn't stop. They took him to the hospital while I grabbed things my mom would need and followed after in my car. Sitting in the ER waiting to hear back as to what was happening and if they were able to stabilize Haden's seizures. Dad walking in from work to head to the back with my mom and Haden. It's maybe 5:30am. The only way they were able to stop Haden's seizures was through putting him into an induced coma. I was finally able to come back. To see my mom crying as Haden is pretty much on life support as he is in an induced coma was hard. The doctor's did the best they could, but informed us that they will not be much help in the area of epilepsy. Haden was flown by helicopter to Loma Linda. By then all of us as family were in the waiting room awaiting the news from the doctor. I can tell you as we sat there in the waiting room we were able to pray, trust, and we all had perfect peace in knowing it was all going to work out. We knew God was in control. When I went in the room to see Haden I could hear a familiar song in the background.... it was a Christian song! They had a Christian radio station playing in Haden's room as he was in his coma. That was very special to me and another reminder that God was there with us.
They were able to bring Haden out of his induced coma with no complications. He wasn't having seizures as he woke up and when he did have seizures later on they were able to stabilize them.
Loma Linda released Haden after a couple of days of testing and making sure he had the right medication.
All was well again for a while. We knew and prayed that God would give direction on what we should do because we knew it was only a matter of time before Haden would have a big seizure episode again.
Sure enough, he did.
We were going back into Disneyland for the second time that day while the younger children stayed back at the hotel with mom. We ate dinner there and on our way to a ride we all received a group text that Haden was having some longer seizures. My mom gave Haden his emergency seizure medication. We started running back and met mom on the street as she was driving in the van. We went straight to the orange county hospital emergency room as a family. Once Haden was settled in we got everyone settled at the hotel and dad I went back around 1am. It was a long night. I ended up going back to the hotel, because it was crowded in the ER. They ended up transferring Haden to CHOC(Children's Hospital of Orange County). There we found out that they specialize with epilepsy..... in fact, one of the best. They also were so wonderful with understanding Haden's autism. They were all so friendly as Haden stayed and had some testing done. A doctor from CHOC became Haden's primary doctor. It was all so divine as CHOC supported our family and there is an atmosphere there that I can't explain. A feeling of knowing we were right where we needed to be. For Haden to have a bigger seizure only miles away from CHOC was a blessing in disguise.
Brain Surgery.
I received news during work that there's a possibility that Haden might need brain surgery. My stomach turned as I heard those words. I stepped away to somewhere private to talk to God and cry, but in that moment I remembered that the safest place to be is in the center of God's will. I asked God to give me a special peace about trusting His plan for Haden. God did. God gave my parents a special peace also. It's times like this when you can't bear the thought that your baby brother will have to go through an extensive brain surgery that God shows His love and reminds you that He is right there with you. It's times like this when you see how loving God truly is and the peace He gives so freely. He's our heavenly father and we can cry out to Him at anytime.
The Doctor's Song.
Haden has a tablet that he carries around and plays music from Hailey's playlist. There is this one song in particular that he plays over and over. He calls it "the doctors song". He says that it plays at the "doctor's". It just hit me one day. I remembered. There was Christian music playing at Loma Linda when he was in an induced coma, so much emotion flooded my soul as I read the lyrics from Haden's perspective.
Called Me Higher by All Sons & Daughters
"I could just sit
I could just sit and wait for all Your goodness
Hope to feel Your presence
And I could just stay
I could just stay right where I am and hope to feel You
Hope to feel something again
And I could hold on
I could hold on to who I am and never let You
Change me from the inside
And I could be safe, oh
I could be safe here in Your arms and never leave home
Never let these walls down
I could hold on to who I am and never let You
Change me from the inside
And I could be safe, oh
I could be safe here in Your arms and never leave home
Never let these walls down
But You have called me higher
You have called me deeper
And I'll go where You will lead me Lord
You have called me higher
You have called me deeper
And I'll go where You lead me Lord
Where You lead me
Where You lead me Lord"
You have called me deeper
And I'll go where You will lead me Lord
You have called me higher
You have called me deeper
And I'll go where You lead me Lord
Where You lead me
Where You lead me Lord"
mediocre Christian life. God has a higher calling for all of us.
God has a higher calling for Haden.
God wants to bring us into a deeper relationship with Him. He wants us to show others HIS comfort and the peace HE bestows. He is worthy of our Praise, so lets glorify and honor Him. He loves you SO much.
Through all the trials, temptations, heart break, fear....God wants to show us that HE is enough and that HE is there with us.
Go where God leads you. He promises that He will be with you.
Psalm 139:7-10
"7 Whither shall I go from thy spirit? or whither shall I flee from thy presence?
8 If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there.
9 If I take the wings of the morning, and dwell in the uttermost parts of the sea;
10 Even there shall thy hand lead me, and thy right hand shall hold me."
Update on Haden.
It has now been months later since we received the news. Through extensive tests, scanning's, and a conference with four of the finest Neurologists and Neurosurgeon.....
Haden will be having brain surgery. God has been preparing my parents through the months of waiting to receive this answer. An answer we were ready to hear, thanks to God. The miracle of all of this is the possibility of this abnormality being where the seizures are coming from. If that is the case, Haden will have that removed in order to have no more seizures! Please pray for Haden and this procedure. It is going to be extensive. If you would like a thorough picture of what the brain surgery will look like and the details involved.... You can click on the link I have down below for my mom's updated post.
momoftenkids.blogspot.com
For God's Glory,
Mackenzie Knouf
Philippians 3:10
"That I may know him, and the power of his resurrection, and the fellowship of his sufferings, being made conformable unto his death;"
Comments
Post a Comment