Haden's Healing
Haden’s Healing
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| I guess he didn't like the suit? |
Holding my 6 mos baby and feeling him go limp and unresponsive with blue around his lips was the first time we realized something was wrong with our precious baby. The Nine years Haden has been on this earth has been met with some obstacles, “He” as an individual and ‘We” as a family have had to overcome. The news “Your child has Epilepsy” was very hard to hear, especially when it was met by medication and side effects along with invasive testing. As a Mother and Father of eight additional children, you can imagine this news also took a toll on them as well. As a mother, I dove deep into studying Epilepsy, to know as much about it as possible. I also as a Home educator tried to teach Haden’s siblings as much as I could about this disease. Months turned into years and I was less nervous about Haden having Epilepsy, most of his seizures were absence seizure (staring type of seizures). Some years later, We found out his lesion on the brain was what they thought to be scar tissue and it was possibly the cause of his Seizures. They wanted to do surgery at 2 years old but he was not having as many seizures and it seemed so evasive and risky we decided to live with the seizures he was having. Another couple years went by and we were able to wean him off medication. The next blow came when we noticed he was not developing properly, further testing revealed Haden was Autistic. Educating myself and our family about autism and how to help with behaviors was another hurdle the whole family partook in, even for his little sister Pami who in some cases has to understand that her older brother may not understand everything the way she does.
Haden was 7 years old when we were noticing,He was starting to have more seizures. Due to our HMO and policies and procedures, trying to get in to see a specialist was a process that should not take as long as it did, however that would be a whole new post. We were referred to a neurologist in our valley that could not get us in for an appointment for over 6 months. That was in March, his appointment was in September, even though I told them he was having more seizures they chose not to bring him in. It was August, the month before our appointment that Haden got sick, he began having a seizure that lasted more than 5 min. At that time I called 911 and we were on our way to the hospital, they were not able to get him to become responsive even though they had given high doses of anti seizure medication. Jon, my mom and myself reached out to everyone we could think of, to start praying, my world felt like it was crashing in. I begged God not to take my son, during this time the doctor said they needed to incubate him and airlift him to Loma Linda Hospital where they were better equipped to help him. Due to the number of personnel needed on the helicopter neither Jon or I could ride with him. Trusting everyone to look out for the best interest of our Son was another hard pill to swallow. God was holding us together, I knew people were praying, I can’t explain it but I could literally feel it. No one was giving me comfort in knowing he was going to be okay, but I felt confident that he would, that was God.
Haden made a full recovery and we left the hospital with a new medication, Mackenzie did a post about that, you can read it on her blog. The medication did not fully control his seizures and it caused bad side effects.He was not himself, he would get very angry and say hateful things. He said he heard a girl and a boy talking in his head, It was not good. I spare all the details of what the family was going through but keep in mind that all though Haden was going through these things, it weighed on our family as well. How do you take care of your child that will only eat a hand full of different items and those are not even healthy for him? How do you deal with people that want to look down on your parenting skills when he misbehaves in a store, at church or even at home? How do you help him overcome never wanting to share, always wanting things to be done a certain way, not wanting to wear certain types of clothes? Helping him develop socially, academically as well as physically was a challenge, everyone seemed to want to give their different opinions but was it truly the best thing for Haden? These are just a few things parents and families of autistic children have to balance. What helped me the most was prayer, daily asking God to guide us and help us do what was right for our family.
We tried to let the Doctor know, we were not having a good outcome with the new medication however we were not able to get an appointment due to the Dr being out of the country. We were going on a little get away to Disneyland, the receptionist suggested going on the trip and take him to a hospital if he kept having seizures. God has a way of intervening, this ended up being a big blessing in disguise. Five months after the first 911 episode, we experienced another one at the hotel we were staying. These moments in life, when your child's life is in danger and you’re not sure what the outcome is going to be will never leave you. I am sure those reading this having had similar experiences know what I am talking about. Everything in your world stops, nothing matters except helping your child, but what if you can’t really help at all? What if all you can do is pray? (Warning: I’m leaving this story to add a side note) God took me to this point not just for this time, I have had to learn as a mother that I can not fix all my children's problems. He also had to remind me that Prayer is actually more important in their lives than kissing it and making it better. My children are on their own individual journeys and they have to see, feel and experience how Great and how Mighty their God is and what He has and can do for them. Even when the outcome is not always how we want it to be, we have to trust that God has our best interest in mind. Time will not permit me to explain the depth of the lessons I have learned having a child with special needs but one thing I can explain is that this verse has new meaning for me Job 23:10 But he knoweth the way that I take: [when] he hath tried me, I shall come forth as gold. Being “tried” is the part I needed to learn, Gold is its purest form after it comes out of the fire and to make it even purer it is put in the fire multiple times. As children of the King of Kings we need to be tried. I am sure we would all like to find a different way to come forth as gold, let me know if you find it. :0) My point is, our children go through the same process, we want them to be gold but do we want what it takes for them to be gold?
Isaiah 55:8-9 (KJV) 8 For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.
We cannot always make sense of the fiery trials that come our way but we can trust in the one that can get us through them! Matthew 11:28 Come unto me, all ye that labour and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. 30 For my yoke is easy, and my burden is light.
This is one of those paradox’s that you cannot begin to understand unless you have been in a fiery situation. How can you get rest while in the fire? How can you have peace in the midst of a storm? How can you give when you can’t afford to give? I can tell you that God’s word never returns void, what He says He will do, He will always do. Even when it does not make sense to our human minds. So to get back to my thought, as parents our children will go through fiery trial, What can we do? Pray! Pray that they will accept the help God offers. Pray that they will trust when it doesn’t make sense. Pray that they will want to become the gold God wants them to become. Loving them and letting them see us handle trials will help them. I wish I could say I have always demonstrated how to handle things like “Job” did but unfortunately I have not.
Back to my Story:
There I was, in a cold dark ER room with my son, not knowing if they were going to be able to stop the seizures. The word came from the Dr that he needed to be transported to CHOC children's hospital of Orange County. Guess What? This hospital is the top hospital in Southern California, it has some of the world's leading doctors for Epilepsy. It is a Level 4 epilepsy center. We would have never been able to go to this hospital if we had tried but because we ended up there and began care with the doctors of Choc, they were able to get our insurance company to authorize us to continue care after Haden was released from the Hospital. During this hospital stay they were able to get a better idea of the “scar tissue” in his brain. It turns out, it was a tumor. This was another moment of terror, The top pediatric surgeon came to visit me explaining that in his expert opinion the seizures were going to get worse because the tumor was growing at a slow pace. We learned that Haden had an episode of status epilepticus, which is a cluster of seizures that are hard to stop and can lead to death. This tumor needed to be removed, we were now in the hands of one of the best surgeons around. The other part to the problem was determining how much of the brain needed to come out to give Haden a quality life without seizures. The top neurologist of the region heard about Haden and wanted to come talk to us about her opinion regarding his care. We now had the top surgeon and top neurologist looking over the care of our son! Praise be to God! The months leading up to the surgery were hard, understanding everything they were going to do was once again heart wrenching to even wrap our heads around. You can read about the surgery on my blog post here. To be perfectly honest, we were praying for a complete healing, we did not want to go through this surgery. It was going to be major and it was not a guarantee that Haden would even be able to walk, his memory was in jeopardy, his eye sight could be lost, ultimately he could die. For 10 months we prayed, we had friends and family praying, we really did not want to see our son go through this fire but his life was in danger if he did not have the surgery. His seizures were better controlled but he still had many break through seizures with the medication he was on. EEG’s revealed he probably was having multiple seizures a day that we could not witness with our naked eyes. We continued the path to surgery all the while praying for a miracle of healing. I even asked the Dr. if on the day of surgery he would call it off if the MRI they do before did not show the tumor. We were doing our best to get him as healthy as possible, in this post you can see the hope we had. The weekend of the surgery, I felt like a weight was hanging on my heart. I kept telling people to pray for a miracle but I also was saying that it was such a dark time in my life. Dark is not a good place to be as a christian. Who is the in the Dark? Not Jesus. I was scared, I was nervous, I was looking at the doom and the gloom of everything being told to me from humans, I wasn’t looking and truly listening to what the Bible says. I was driving back from his final check before surgery, in my mind the words I was saying kept ringing in my mind “this is a dark time for us, please keep us in your prayers” As those words kept ringing, I began praying, asking God to help me somehow have the strength to get through all of this. At that moment, it was like an audible voice plainly said “In me is not darkness” I repeated what I heard and started to ponder it, in Him is no darkness. The radio was on a christian station and at that moment the DJ said, something to the effect of did you know that in Jesus there is no darkness at all? I began to weep, I could not believe the comfort that came over me. I just kept repeating in my mind, in Him is no darkness. We asked the church to anoint Haden that morning before surgery which happened to be a Sunday Morning. It was an emotional time for not just Jon and I and our children but also for my Parents and the church family that had been praying for Haden’s upcoming surgery.
This was it, we would lay hands on Haden in prayer and anoint him with oil and then Jon and I would go spend the night with him in Orange County to be at the hospital very early in the Morning. Blood was donated for him from our family (Jon, Mackenzie, Hailey and My Parents as well my Aunt Lana and Uncle Alfred.) That was another emotional thing for me because they said, my iron was too low to donate for him, but I was thankful for everyone willing to donate, as time would tell he needed everything that was donated.
That morning, all my adult children had to work and take care of the younger siblings so they were not at the hospital. My Parents, Aunt Lana and Uncle Alfred were with us during the 7 hour surgery. Story Pause: I want to pause here to explain how it feels to be together during these times, I remember how good it felt when all the kids came down to Loma Linda during his first bad episode. There is no explanation of how it feels to have such a big family when times are tough! They always have a way of lightening the load and creating humor at just the right moment.
Now back to the surgery, there were complications, Haden was bleeding and they were having trouble getting the bleeding to stop but with a full blood transfusion, Plasma and what they call blood products he came out of the surgery and we were in ICU, The Light of the Lord was with me even though wires were coming out of Haden and IV’s along with uncertainties of how he was going to do through this whole process. Even the thought that he came very close to death during that surgery. It was a comfort to have the support needed to maintain strength and rest, I want to thank The Mcdonald House for giving us a room to go and shower and get rest and even provided many meals during this time. During the week Haden was being monitored with the wires on his brain trying to pick up seizure activity. Haden was doing good even though he was stuck in bed, he seemed to be fairly normal. The first surgery did not remove any brain but was simply to place the grid on his brain. If seizure activity was captured, they would know more precisely how much of the brain to remove. Unfortunately, they were not able to capture any seizures but when we were woke early Sunday Morning with everyone rushing in checking wires and talking to each other but not talking to me, I kind of lost it. Obviously something was wrong but they did not want to tell me until a doctor could explain that there was some bleeding going on. Mackenzie was with me, you can read her version on her blog. Since he had been doing so well, Jon was home with our family. He was back as fast as he could get there, we live at least 1 ½ hours from the hospital. We had to make a decision. Let the Dr. go in and remove as much brain as he thought he should or let him go in and stop the bleeding and continue the monitoring. We did not want Haden to continue going through the process, we opted for immediate surgery and asked everyone to pray for God to guide the surgeon and give him wisdom. The family was all able to come and spend the day waiting for the surgery to be complete, a wonderful friend brought dinner for all of us, things like that mean so much during these times. When the surgery was over the Dr. told Haden “ I need you to talk to me and then I can leave you alone” Haden’s response was “Go away” the Doctor smiled and said “At this point that is all I need to hear”
Haden made a miraculous recovery! He has had no seizures, he has had no negative effects from the surgery and he is developing his academic skills in amazing ways! To God Be The Glory!
The diagnosis:
The last piece to the puzzle was waiting for the results of the tumor biopsy, they had prepared us to possibly need radiation and chemotherapy if doctors thought it was beneficial.
No Cancer, no treatments! That was the news! Haden has a slow growth tumor that will have to be observed for the rest of his life, he just completed his second MRI since the surgery and so far everything seems good. Haden has had an amazing healing!
Make a Wish:
We are excited! Haden gets to go on a Make a Wish trip in July.
We are so thankful for this opportunity, and want to thank everyone that donates to the charity. Make a wish has been very generous to us, Everyone 18 and under including Jon and I will enjoy an all expense paid trip, 6 nights and 7 days. Haden chose to go to Walt Disney World ( I think his siblings helped a little with that decision), our trip is set for July and we are all excited to go. It has been quite a journey for our family and I think it is so special that
God is using Make a Wish to bless our family with this trip. The adult children are making plans to go as well, if all the plans come together. We enjoy family vacations and I know the days will probably change but for the time being we enjoy going on vacations together.
Thank you for letting me share my heart and explain in greater detail what has been going on with Haden and our family. I know this was a long post, thanks for reading it. I hope in some way this can help someone else see what a Mighty God We Serve!
Jeremiah 29:11 (KJV) 11 For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end.
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| Easter Sunday 2019 |
I know that with a child having special needs, the other children can at times feel neglected. One thing we have tried to do as parents through the years has been to give all our children the best of ourselves, I feel we have been spread thin many times but God has always provided extra special interventions. One thing He has done for our family is the blessing of having my parents so close to us. They have been amazing Grandparents and Parents and I am so thankful for the support they provide in multiple ways. I am also thankful for our Adult children and the love they have for their younger siblings, they step up and help whenever it is needed. Basically we are blessed and our children hopefully reflect on those blessings and the amazing grace God has provided our family.
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| Easter Sunday 2019 |
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