Wednesday, September 25, 2013

Raindrops And Rainbows

I am not a "glass is half full" person. Far from it. I like to put on a good game face most of the time, but in reality I am a worrier, a pessimist, and I always imagine the worst case scenario. I don't know if it is the medical background in me or what. Maybe I just prefer to assume the worst so I can be pleasantly surprised if all goes better than expected. And let's face it. It is a way to protect myself from the gut wrenching pain of utter disappointment.

I have been this way for as long as I can remember, but in the last five years or so I have really worked on allowing myself to feel. Part of my recovery program from my alcohol addiction. Feeling the good and the bad. Which includes allowing myself to have hope. And having hope opens you up to pain when things don't go as you had hoped and prayed. 

I had hoped, prayed, and admittedly begged God to give me one child that wasn't on the spectrum. After years of praying it I really believed that He would answer my prayer in the way I wanted Him to. But He didn't. And I was devastated. Why? Why couldn't He do this for me? I wasn't asking much. I thought I knew what I couldn't handle...and having another child with special needs was not on the list.

Last year my father-in-law went into heart failure and we weren't sure he would make it. It was terrifying. He is an amazing man. Loving, gracious, and generous to a fault. He worked harder at that time than he did when he was actually working for a living. He was a chaplain. He volunteered at an Alzheimer's facility. He mentored men at risk coming out of jail. Why? Why him? Why then? Thank God he pulled through and his health is stable at this point. But at that time when we were in the thick of it, a million thoughts and emotions run through your head.

A couple of weeks ago when my Dad went into surgery for his cancer, I prayed that it hadn't spread. Prayed hard. We all did. I was so sure that they would be able to remove the cancer that day and that his cancer would be a distant memory by now. But that wasn't the case. It had spread. And now we wait for further testing followed by months and months of treatment. Why? Why did all of these terribly difficult and heartbreaking things happen?

We will never know. I don't pretend to know why God allows things to happen in our lives. He has the whole picture. I don't. I see in my selfishness what I want, and what I need, and I give Him a list of how best to go about orchestrating my life so that it fits my seemingly perfect expectations. Fortunately I am not the ultimate decider of my fate....or anyone's fate for that matter. I am not the perfect one. He is.

At the time of all of these difficulties, I failed to see the bigger picture. All I saw was the pain. The anger. The let down. The fear.  As time slowly passes, I see more. Maybe not the complete bigger picture that shows how these trial affected everyone they touched; but the little pieces of the picture that affected me. God reveals bits and pieces of His plan for my life over time. He doesn't do it all at once. Almost as though He waits until my heart is scabbed over enough to accept the little gifts within the pain.

I am so thankful we had James. Diagnosis and all. He is the happiest kid on the planet. Since the day he was diagnosed he has made great progress and has far surpassed the skills of his brother, which is awesome and heartbreaking at the same time. But more than that, he has added a joy and a specific healing to my heart. My guilt. Guilt that I caused Andrew's autism. That somehow I did something when I was pregnant or when he was an infant that sealed his fate. Too much tuna, dental work, epidural, vaccines; somehow I knew one of those things forced him to regress into autism. But then James came along. And I did everything differently. I mean everything. And yet, he has autism too. Though he is less affected, it is there. Despite the devastation that James would struggle more than I had hoped, him being diagnosed healed the part of me that thought it was my fault. It made me see that there was nothing I could have done either time to stop it from happening. That part of it was the gift amongst the pain.

The other blessing is that James will understand Andrew more than most. He will get his quirks. He will have a special window into Andrew's mind that even his dad and I won't have. Because he shares some of the struggles, he will have a connection with him that he may not have had otherwise. I pray that with bring them closer together as times passes. And that when the day comes that we are no longer here, James will be the best friend and advocate that Andrew could have. 

My father-in-law's health struggles are awful. They are unfair. They worried everyone around him. My husband was very affected by it all. He was scared for his dad, but also scared for himself. When a health crisis happens, it tends to force us to face our own mortality. Though I wish his dad didn't have to go through what he did, there was a gift in it for our family. It was the final push Bryan needed to take control of his health once and for all. He had been on the fence for years about weight loss surgery and when this circumstance came down the pipe, it forced him to make a choice. His choice changed our family's circumstances for the better. He went through all the avenues necessary to get the surgery scheduled (and it was a struggle I tell ya) and 8 months later it was done. I am so thankful that something so good came of something so awful.

Finally, my Dad's cancer. Many would say "how could there be a blessing in that". It is a current crisis, and a scary one at that. Cancer is terrible. I hate it to be quite honest. But good has come of it as well. My relationship with my dad has not always been great. Circumstances happen in life and in my case, I come from a broken home. There was a span of time that my dad was not actively in my life. In recent years since my kids came along, we have a better relationship. But the closeness was still missing. When my dad had surgery, I wanted to be there. I needed to be close to him so that I knew he would be OK. It is true that healing can come in the midst of trials. A barrier that was between us has been broken because of cancer. My dad has said some things to me in the last weeks and months that have healed my heart from years of childhood pain. I don't even think he knows it. But he is different. His battle and the attitude he has chosen to take because of it has spurred healing in me and has helped others in their own struggles. 

Cancer sucks. Health problems suck. And yes I will say it. Autism sucks. I am not thankful for these things. They are hardships that can drain us to our very core. Leaving nothing left to hold onto but our faith and our family and friends. But when you look closely....when you look from a different may just find the gifts among the pain. It doesn't happen when you are in the thick of the trial. But after time passes and the rain has left it's mark, the rainbows appear and the entire picture comes into view. And sometimes it's beauty makes the trial seem more bearable. It gives us a renewed strength and resolve to continue on despite our difficulties. 

I am not thankful for the hardships of this life. But I am thankful for the hidden gems that emerge after the torrential downpour. The rainbows that come after the rain.

Tuesday, September 17, 2013

Tried And True Part 3: Sleep

This post has taken me so much longer to write than the others in the series. Mostly because as many of us know, sleep changes often with our kids. We think we have it all figured out, and then it all changes in a moment. Because Andrew is 9 years old, we have been through it all with the sleep issues. From the beginning of his little life, his sleep has been disrupted. Sometimes things work, sometimes they don't. Or sometimes they work for a blissful time and then stop with no warning or cause. It is enough to drive even the strongest person batty. There are some things that have worked more often than not and therefore have made the list of Tried and True. 

The first thing that has been imperative in getting Andrew to not only go to sleep, but stay in his bed when he is awake, is his crib soother. Yes, he is 9 years old now. But he has always had a Fisher Price crib soother. You know those things that attach to the crib and light up and play music to sooth babies to sleep? Well, Andrew has always had one for comfort and I am not sure that will ever change. But hey, if it works, why mess with it?

The second thing that has been a golden standard to help him feel comfortable enough to go to sleep since he was 3 years old is his bed tent. Many kids love that enclosed feeling and Andrew is no exception. Ever since he was a baby, he liked to be confined to a small space. It made him feel safe, and less overwhelmed with the world around him. We have a bed from IKEA that has a tent that attaches to it. We go nowhere without it. Seriously. Camping, hotels, grandparents...etc. Any overnight stay requires the bed tent and whatever contraption we need to assemble it to any bed he will be sleeping in. It also helps on trips because he wakes up and what he sees around him is so familiar, that he goes back to sleep easier since he can't really see outside the tent arch.

The third thing and perhaps the most important is his weighted blanket.  Andrew has had weighted blankets since age 3. He started with a 6 lb one, then a 10 lb, and now he uses a 15 lb one. He has always been a big kid and loves deep pressure. When he is super dis-regulated, the weighted blanket really calms his body for sleep. It helps him feel where he is in regard to his environment. We did a ton of research on weighted blankets and the fillers and have always ordered ours from Salt of the Earth Weighted Gear. You can customize the fabric so that you can choose a pattern your child prefers. Andrew loves the ocean so we have always done an ocean themed one. There are different fillers to chose from as well. We have always gone with the fine grade river stone instead of the poly beads. It allows for less bulk as the weight goes up, and I have never had a problem with tearing or drying issues. They have held together wonderfully even with a lot of washes. The owner of the company is wonderful and they are great at answering any questions and helping you choose the exact weighted blanket for your needs. I highly recommend them.

Now lets talk about sleep supplements. We didn't try anything at all to help promote sleep until Andrew was 7 years old. He did not sleep more than 30 minutes at at time for years. As he has grown and is now 9...he has improved. But he still is up 3 to 4 hours a night often. We finally decided to try some natural supplements to see if they would help him fall asleep and sleep through the night more often. They don't work all the time and must be cycled as they lose effectiveness, but they do give some relief and help him sleep through a least part of the time. We cycle using Melatonin, 5HTP, Magnesium, GABA, and other natural herbs like Skullcap, lemon balm, and passionflower. Sometimes we only use one thing, sometimes a combo. His neurologist and pediatrician are aware of all of them and have signed off on their use as needed. We have seen no side effects yet and all have helped him for at least a short time.

Other supplements we use are probiotics, Magnesium, fish oil, and a good multivitamin. The Magnesium really seemed to help with sleep and that is the most recent thing we have tried. We currently have him off of all other sleep supplements. We also noticed that Andrew's meltdowns and behaviors decreased significantly when we cut out food dyes, artificial flavors, high fructose corn syrup, and chemical preservatives. He seemed more able to control his outbursts and was more regulated than he was when his diet included these things. Trader Joe's, Sprouts, and Fresh and Easy, and Whole Foods are definitely our go to stores to find foods without these ingredients.

Finally, Andrew has a lot of anxiety. As he is getting older (pre-puberty), it seems to be getting worse with bedtime. Since last November, he would not let me leave him alone to fall asleep. If I did, he would urinate in his bed. I was changing his bed up to 3 times a night. He knew if he peed, I would come in and change him and give him that attention he was seeking. But month after month, we couldn't get him to stop. Social stories didn't help. Waking him up to take him to the bathroom before he would normally wake and pee his bed didn't work. I was stuck in his room for an hour plus at the beginning of the night until he went to sleep, and then when he was up in the night for hours on end I was stuck either on his floor, or the family room, or getting up every hour to change him when he peed again. He refused to get out of bed to pee. He had grown out of all pull ups and I refused to put him in adult diapers, so he would be awake much longer than he would have if he wasn't wet and uncomfortable.

A week ago I had the idea of giving him a special nite nite iPod nano with music and very relaxing baby videos that he still enjoys today. iPods and music are very relaxing and highly preferred for him. The Nano has none of his pictures he takes and likes to edit or apps to play, so it is much less interesting then the iPod touch he used to have in the middle of the night when he was awake for hours and I wanted to catch a few winks. Immediately his anxiety drastically reduced as he was able to lay in bed with his iPod until he fell asleep. We remove the headphones and iPod from his bed after he is asleep and put them in the hallway outside of the bathroom. We kept telling him over and over again "pee pee toilet and then nite nite iPod" and he got it! When he wakes in the middle of the night, he gets up right away to find his iPod and he goes to the bathroom in the toilet. Then he goes back to bed and falls back asleep with his iPod and headphones much much quicker than he did when he was up hours on end laying in bed without the nite nite iPod. He is getting more sleep. I am getting more sleep. And most importantly, he is becoming more independent! Not to mention I have so much less laundry to do.

What I want you all to take from this post, especially the last paragraph, is that our kids are different. The typical rules of bedtime routine and sleep do not apply to them. We have got to think outside the box to try to find ways to help our kids that doctors, friends, and our parents never tried before. And sometimes they work! This last week has been the best week I have had in a very long time. I hope that our unconventional way of dealing with Andrew's sleep problems last for a long time to come. I love that he is not on any sleep supplements and he is doing better than he was when he was on them. Anxiety breaks through those things and dealing with the anxiety problem and giving him some control has helped solve some of his sleep problems. At least temporarily.

Friday, September 6, 2013

Fear and Faith

As I sit here in front of my computer screen, my mind reels from the events of the last few months. Life is hard. It is hard for everyone. We all have our own struggles. The battles we fight with ourselves. One of my biggest fears is fighting what we don't see coming. Like Autism, there is no exact cause, no way to know who it will touch, and no all out cure. Cancer.

Yesterday at 4:30am, I got in my car and drove a couple hours to the hospital of my birth. After insurance changes and mess up after mess up, my Dad was being prepped for surgery. In a couple hours we would know whether his cancer had spread to the surrounding lymph nodes or not. Waiting is not my strong suit. OK, I'll be honest. I am horrible at it! Having to wait since finding out in June that he had cancer to know if it could be removed completely has been a very difficult thing for me. 

I am a fixer. I am a logical thinker. The sooner we could get in there and have answers, the better. But the insurance companies had other plans. Loosing paperwork. Twice. Things kept getting in the way and pushing the date out further and further. My heart knows that everything works out the way it is supposed to and that God is in control. I truly believe that. But my control issues....they think that somehow if  A, B, and C happen in my time frame that we can control the outcome. God is constantly working on this with me. 

My Dad has this concept down. I am sure that the diagnosis was shocking and that the fear is there, but stronger than the fear is the knowledge that God has a perfect plan for his life and a perfect way of implementing it. It's the people around him like me that are struggling with the what-if's and the shoulda coulda wouldas (sp). 

As we waited in the ICU waiting room, the clock seemed to have stopped. Time is not your friend when you are waiting for answers. As almost an hour and a half passed since surgery was to begin, we thought "Yes, the cancer must not have spread because they would have closed him up already and ceased surgery by now", which is what we were told would happen if it had been found in the lymph nodes. Not 2 minutes after we sighed a big sigh relief, the doctor came around the corner with the news that the cancer had spread and that they closed him up and he was in recovery. 

You know how in "Charlie Brown" his teacher has that echoing voice that sounds like it coming from a tunnel far away? That is how the doctor sounded to me in that waiting room. All the words after "cancer has spread to the lymph nodes" sounded like a jumbled mess in my brain. We went in to see Dad and he was still coming out of the anesthesia. Any ability I had to be able to hold it together and put my game face on was lost the moment I saw him in that state. My Dad has always been the strong one. I don't remember seeing him sick more than twice in my life. He never stops going and especially in the last decade he has been available at the drop of a hat whenever I ask.

I quickly left the room and found the nearest bathroom to hide in before the tears came. I am not a crier. I am too strong for my own good. Unemotional to a fault. It is so easy for me to hide how I truly feel. But not in that moment. I was on my knees in that bathroom and praying as the tears fell. I didn't pray for healing. I prayed for God's will to be done and His glory to be revealed in this trial. It is how I was raised. I am sure that as this process continues, I will be praying for healing, and for complete restoration of my Dad. Probably not just praying....probably some all out begging. But in that moment, I had to give it all over to the only one who has any power over our circumstances. Because I can't carry this one. It is too heavy for me. That is my Dad's prayer, and I am trying to make it mine.

The road ahead will not be easy. The treatments will be tiring, and extensive. But the outcome can still be a good one. The type of cancer he has is supposed to be slow growing, so hopefully we can get on top of it and stop it in it's tracks. Many lessons will be learned during this trial. My Dad is learning to slow down and let others care for him. Again, God is trying to teach me to be patient and wait. Two things that I am the absolute worst at. We all have to trust and rely on Him for strength, peace, and knowledge of what to do next. 

I am thankful for my faith. It has gotten me through so much, especially in the last 7 years. I am especially thankful for my parents raising me in the church and instilling those priorities in me at a young age. This is what my Dad wrote the night before his surgery:

"Thank you GOD for the trials you send us. Not for the "pain" in the midst of them, nor for the "joy" at the end of them, but for the "assurance" because of them. Sometimes to direct us, sometimes to correct us, but always because You love us, and always to give to us what is always best for us. THANK YOU GOD!"

Thank you Dad, for sharing your faith with others and believing in God's plan even in the midst of fear.