Pink Floyd and Billy Joel

God amazes me. I wish I had a better word then amazes, because I happen to use that when referring to all kinds of things. Like the great wash machine someone gave me that holds a ton of clothes...hardly the same playing field as God. Nonetheless, in my inadequate human terms, He is amazing. When all of this started with Hewitt, He gave me this adrenaline I'd never had before. I didn't really care if I slept, I didn't need or want a break, I just wanted to be near him all the time. I would like to think these are the maternal instincts He created me with. I had just never felt them quite so intensely. But, like anything that repeats itself for so long - I began to grow tired...maybe about a month ago.

I have been asking God for a break, for a reprieve, to lift my heart and soul. I didn't know what that was going to look like, but I was resting in His promise that He gives rest to the weary. (matthew 11:28-30) I had an older, wiser woman once tell me that as a busy mom you have to stop looking for the breaks all the time and trust that God is going to give them to you. He knows the burden we carry and He wants to take it from us. So, last weekend when our friends unexpectedly offered to take the kids I thought this is the break He has been planning. Praise Him! He is good. Friends we feel good leaving Hewitt (and Lincoln and Everett) with. Time away. Time alone. Time with just Titus. (a rarity) God provided physical and mental rest at a wonderful time. My body and mind have felt rejuvenated all week.

But, I'll be honest...as soon as we saw Hewitt again on Monday and saw him dropping and drooling and staring off...my heart was so heavy burdened again. I felt a little embittered at my break. I knew it was good, I knew it was from God, but I still felt so sad. All day long I am restricting him from things that every normal kid should be able to do...it's so exhausting. I feel like I'm withholding childhood from him at times...I carry this guilt, and I can see now, a brokenheart. Sometimes I don't know what to do with my brokenheart. It has come so unexpectedly, and I don't know how to heal it. I can't change what's happened to him and I have to keep doing what I'm doing to keep him safe. Tonight, God gave me something beautiful - and I think the reprieve my heart needed. It was very simple, and it might seem silly. But, we went to this fair with friends in Mountlake Terrace tonight. We sat in this field while live music played and all the boys were up and dancing, except Hewitt. Sometimes I can't even look at him when we're faced with these situations. I want to let him go so badly, but I don't want him to get hurt. We hadn't seen any seizures in a while, so we decided to let him get out of the stroller. We got him out and that little boy danced like I had never seen him dance before. (He was on super soft grass and he didn't have his helmet on.) He danced to Pink Floyd and Billy Joel songs with ladies he didn't know, he boogied all over the place. It brought so much joy to my heart and soul...I couldn't even describe the feeling, just watching him have fun, be a kid and MOVE around without someone holding his hand or anything. I felt like I was radiating within. And with that one little event, God is showing me He will heal my heart. He will lift my soul.

Psalm 147:3 - "he heals the brokenhearted and binds up their wounds."

If only...

We found this on a karate gear website. It would be so wonderful to throw on Hewitt and let him run around without someone holdling his hand.

However, it might be a little warm for the summertime.

So Far, So Good

I can feel my optimism returning and I find myself guarding it carefully. We had our appointment with the epileptologist today and my first knee-jerk reaction is to say it went wonderfully. She listened, took notes, affirmed us, and suggested the things we hoped she would. It was everything we had hoped for. But, as I learn, (ever so slowly) that I don't like to eat my words. I am going to tell you instead that things went nicely and "so far, so good."

She suggested a 24-hour EEG, so we are scheduling one so she can get a good read of what's going on. She questioned the doose/MAE diagnosis, but I don't want to react until she gets a better read. The other diagnosis she was leaning towards has a much worse prognosis. But then again, it's just a label for what we've already been dealing with. It won't change that. She also suggested that we try the ketogenic diet! We were very excited about this, as we would rather try it then go through the long list of meds that are out there. And, from what I've read, a good epileptologist would see this as a very worthwhile effort to reduce seizures. The only problem is that there is a 6-month waiting period for the diet, as it has to be initiated in the hospital. An alternative would be starting on the Modified Atkins Diet until we can get in. We are excited about this oppurtunity. From what I've read it does similar things that the ketogenic but is not as rigorous and will be easier on our family and especially Hewitt. Some people have had complete seizure freedom on this diet. We are hoping and praying for that!

So, that's about it for now. We aren't going to add any meds, which we are quite pleased with. Hopefully we will be seeing a dietician soon. If we don't, I'd like to start him on the MAD diet on my own. It seems very manageable. I am thankful for all of the people that have been encouraging me to follow my instincts as his mother. Hayden and I have made some hard decisions the last couple weeks regarding meds. But, each time we've made a change we've had a complete peace about it. Even now, I feel hopeful again. He is still having seizures, but I feel like we have some alternatives other than doping him up on drugs. Not that the diets are without possible side effects, but he should maintain his cognitive development on them.

We went to the park for the first time without Hayden today. We had a friend and her 2 boys with us, so that definitely helped. It was hard. He was having a hard time walking for some reason and was spacing out a lot. He also had his hockey helmet on which makes him stand out ever so slightly ;-). But, he didn't get hurt, and they all had fun. Mission accomplished. We are going to try to do everything we can to maintain a "normal" childhood for him. Sometimes I think the obstacles lie with my own issues than they do with his. Letting go is hard. I am thankful for today. I notice I am smiling easier. I think the break we got this weekend was just the rejuvenation I needed to face this with a little more fight than I have been.

Some Time Apart

As I write this, I sit in my quiet and empty house, only hearing the quiet snore of Hayden taking a little nap!

Friday, we went up to Bellingham to visit with a family from our old church who recently lost their father/husband. Hayden has the honor of leading the memorial service this coming Monday. We had planned to drop the boys off with some other friends while we met with the family, and right before we left town, she called back and told me we could leave the boys for the weekend if we felt comfortable. I told her I would bring their stuff and think about it on the way up.

The longest we've been away from Hewitt since this all started is a few hours for a couple date nights. Now we had the opportunity to leave him for a whole weekend...a choice that's hard even when your child isn't having these new medical issues! But, we trust this family, they've watched our boys many times before this all started while we've gone on weekends away. I don't know if they fully understand what they've signed up for and how much of a blessing it is to us to get a mental break from all of this. They have 3 older school-aged children and it is so sweet to see them all play and get along so well. They are very dear to us. So, he is having a blast, doing okay. He hasn't had any big ones and I keep my phone with me constantly. This is good. (i keep repeating to myself) It's good for Hayden and I. We kept Titus with us, but just lined up a last-minute baby lover from our church to take him for the night...WE HAVE A NIGHT IN OUR HOUSE ALONE! We'll probably end up doing something really lame like cleaning it or playing video games or something...but, whatever we do, we'll be together, alone for an evening and that is wonderful. It's something we need to do for us and for our kids. So, I am going to quit being lame, get off the computer and take my husband out for dinner!

Botched EEG

Part of the joy of seeing Hewitt come back to life also means enduring his major temper tantrums. Which he decided to show the eeg technician halfway through his appointment this afternoon....I don't know if she got enough read for the neuro. It was extremely frustrating to take the time to get down there and then have him lose control. But, we are still rejoicing in the fact that he is "back." Even if it means with an attitude. He is using his imagination again today...such a joy!

EEG tomorrow

We will have our first EEG tomorrow at Children's. We will then have a follow-up and first time appointment with an epileptologist on the 23rd. We expect to hear the results then. We have weaned Hewitt off of his zonegran, the 2nd med we added. It has been over a week and we have seen a vast improvement in his speech, motor skills and other things he regressed on for the last 3 days. We are encouraged, and enjoying having him back. We started the wean of his depakote (the 3rd med we added) today. This is the med that has increased the dangerous drops. We feel hopeful about taking this away, but know that it might increase another seizure type. But, it will be one that is less dangerous. This is our hope. Please pray for him that he won't have any dangerous withdrawal seizures from the wean.

Short Update

Despite our concerns about Hewitt's increased seizures we continue to be turned away at Children's. Last Thursday one of his legs started freezing up and he could hardly walk on it. I took him in to the ED with the concern of that and the amount of seizures he was having and they sent me home without an explanation and without an evaluation from a neurologist. We are really frustrated right now. We are trying to focus on the positive though. We were told they wanted to schedule an EEG at Children's this week. That might expedite the process a little bit. Otherwise we will wait to see an epileptologist on July 21st at Children's. I am still concerned about his leg. It is acting up again today and we have no idea why. It seems like to me it would be something you would do an EEG on WHILE it was happening, just in case it is a focal seizure...I don't know if it will still be happening later this week. His neurologist in Tacoma wanted to add a fourth med to take care of it WITHOUT even seeing him to evaluate him. I refused to do that as we're seeing a new Dr. in a couple weeks. Thanks for your continued prayers. Please pray for patience for us. Also, for Hewitt's leg. I keep having these visions of it being something really horrible and him losing his ability to walk or something. It's just scary. That's probably not a possibility, but with everything else going on, it would be nice if his legs worked properly! We're out at camp this week so hopefully it will be a good breather for all of us.

Enlightenment in the ED

I took Hewitt into the emergency department this afternoon because of an increase of seizures. On a typical visit to the ED, I sit in the waiting room, looking around me at the sick kids, wishing that I was there because Hewitt was sick, or broke something, or had any number of ailments that come and go in childhood. I sit there feeling sorry for him and sad for us that our lives now include a "chronic medical condition." I look at those parents and I think if they only knew how fortunate they were that it's only rota virus...(bear with me, I am learning). As I sat there today I watched a woman come in with a stroller. Her little girls feet were hanging out the end and I could see her cute little shoes and leggings. The rest of the stroller was covered by a blanket because the girl was sleeping. I sat and watched and wondered why they were there. Eventually I went back to my pity party on the couch with Hewitt. The next time I looked over the blanket was off of the stroller and the little girl was looking at us. She might have been 2 or 3, but I don't know for sure. Her sweet little face was obviously disfigured, with droopy eyes and her head shape was not that of a typical little girl. At that moment, when I saw her sad eyes and misshapen head I was overcome with shame. Who am I to look at these people and think that my pain is any more significant than theirs? I would never had said that aloud, but that is exactly what I was doing. Have you ever had one of those movie like moments where you imagine yourself standing in the middle of a freeway and all the cars are flying by you and you can't see any one's faces...but then suddenly things go into slow motion and you begin to see people's faces and realize you aren't alone and that although life is whirring by in the midst of everything we are constantly surrounded by people dealing with their own problems, trials, victories, etc. This was one of those moments. And, while I have seen these people before, I have never felt their pain. And though life continues to whir by me, I feel like my eyes have been opened to something I've never seen before. There is a whole world of parents and families out there dealing with loss. Parents that are stricken with fear, pain, bitterness, anger and sadness. Parents who did not get the child they hoped for, or had that child taken by some illness or accident. These parents need support. They need love and they need hope. I have access to that hope. The hope that will change their lives if they let it. So, now I am asking myself what I am going to do with all of this pain, bitterness, anger and sadness in my own life. How am I going to translate it into something tangible that can glorify God and draw His hurting children to Him?

Moral Support

Brought the older boys to Children's to pick up Hewitt's helmet and they had a lot of fun trying on the helmets in the room. The one Lincoln is wearing on the right is actually like the one we just got for Hewitt. He FINALLY has the right helmet. They made the whole helmet process much more lighthearted for me and "cool" for Hewitt.

Settling In

After these last 3 weeks of intense seizures - mostly drops, I feel like we're starting to settle in to some kind of pattern or normalcy or something. I don't even know what to call it. I don't think I'll ever get used to watching my child randomly space out, fall down, throw things, etc.. I want to fight for him to stop having seizures and stop having side effects from medicine. But, I am no longer crying every day as I watch him. I am no longer letting myself fast forward 2 years to when he'll be starting kindergarten. What I am getting used to is how I need to respond to his seizures and side effects. I know now he needs someone to hold his hand when he is walking around on a hard surface, he needs to wear his helmet on hard surfaces, he has to be harnessed when he's eating at the table, he can't be in a bath without someone within arm's reach, running isn't the same for him. He's very wobbly and can't go as fast as he used to without falling. I can look at him and see what has changed. I can look at those things as temporary effects to what he's enduring everyday. I have to hope that he will get past this. I realize now that for his sake, for his care, for his future...I have to suck it up, stop freaking out and be strong for him. He is 3, there is no one else that can do this for him. And, although I am writing this right now, it doesn't mean that I will be strong everyday. I know I will get distracted by the pain and unfairness of it all and I will get caught up in the unknowns of tomorrow. I will grieve the childhood I dreamt for him. I will feel sorry for myself for having to do this day after day. I know it will happen. Maybe that's a really poor way to look at all of this. But, I would like to think that God is going to change me over a matter of time not, necessarily overnight. He has started already by letting me see where I am weak. I am thankful for that. I feel as though He is lifting my head and helping me to see the positives I couldn't before. (Well, sometimes I could see them, but they didn't seem to outweigh the negatives and so I didn't really care that they existed.) We are no longer frozen in fear and sadness, we are moving forward and we have a great leader.

"Special Needs"

I have been having a hard time with this term. "Special Needs" When this all began I went through a time of grieving Hewitt's future. There are a lot of unknowns with Doose syndrome. Many kids have severe developmental delays because of it. This has been one of the hardest things for me to accept. Much like the first week when I finally had to face God about letting go of his life. This has been my second "letting go" of Hewitt. He was born perfectly healthy. He lived almost 3 years perfectly healthy. Not just healthy, but smart and witty and feisty and fun. He is unlike my other children. I adore them all the same, but Hewitt is different. He is his own man.

As one Dr. put it, it's like he's been struck with lightning. I know I've posted that before, but it's so true. I was reflecting on this "letting go" yesterday and all the feelings of sorrow came rushing back. When the nurse came and she was telling us the things he qualified for she used words like: developmentally delayed, special needs, BLAH BLAH BLAH BLAH. She talked about the special programs at Shoreline here and all I could think about was him sitting in a classroom with all these developmentally delayed children in his little blue helmet, looking delayed but feeling lost. I can't think about it without crying. He shouldn't be there and even now it's hard for me to let this go. There's nothing wrong with those children, but when you have a healthy child who's mind and body are strong, it's hard to imagine how he might feel being surrounded by children who's minds and bodies aren't as strong.

When I was walking through this in the beginning I was terrified. I mean absolutely terrified of the idea of losing him...not physically, but his mind. I cried about it all the time. Of watching my little boy turn into something else, all our future dreams of love and life were suddenly stripped away. It seemed so unfair, so impossible. I carried this guilt because I honestly felt, and I didn't want to say it out loud, that it would be harder to deal with that than with actually losing him. I know that sounds so bad, but that is where I was at. I wish I could say that I had an amazing revelation that changed my perspective, but I didn't. Like before, I am resting in simple things. The fact that God knows and calls me by name. The fact that He loves Hewitt more than I do and He knows the hurt I feel for my son. The fact that this life is a vapor and the pain of today will be gone in heaven.

I am trying to accept the changes now. He has small bits of regression, largely medicine related in my opinion. I have met enough people that have positive outcomes that I no longer focus on this aspect of the syndrome. But, every once in a while like yesterday, it comes back to the surface and I have to deal with it again. Acknowledging that God is in control is the most comforting thing I can do. Hayden reminded me of something very simple but profound in the midst of all of this. God is always right. He is always right. He doesn't make mistakes, which means that He allowed this to happen to Hewitt and it wasn't a mistake. Right now I'm not sure what that means for Hewitt, but I know that He is teaching me a lot through it.

A Helping Hand

I had a meeting with a social health person a couple weeks ago. I had Hewitt and Titus with me at the meeting and had the opportunity to share with the woman, what we've been going through with Hewitt. She had the opportunity to witness what we've been dealing with (he was having a lot of drops that morning). She was very sweet and about a week later I received a lovely message on my voicemail from her. She said she couldn't get my adorable little boy out of her head and she wanted to do something to help us. She made a referral for a public health nurse to come meet with us. She said the nurse would be available to help us find our way through the system.

So, today we had a public health nurse come to our house. I am so excited that she is now a part of our lives and this mess we're in. I think her services will help us navigate through the many elements that I often don't have time to pursue (or knew they even existed) - the medical system, support groups for our family, disability insurance, getting him into a headstart program, etc..she is available to help us be an advocate for Hewitt. The meeting helped affirm our feelings about our neurologist...that we as parents have a responsibility and if our Dr. isn't willing to listen to our concerns then we need to seek care elsewhere. Her service is provided free of charge and she is available to help us with whatever we need help with! I feel so much better knowing we have one more person in our corner that has dealt with the medical system.

Medically, this hasn't been a great week for Hewitt. His drop seizures have decreased since we decreased the dose of his 3rd med (depakote). But, his absences have increased by a lot. The last couple days have been really frustrating to watch him be so out of it for such a large portion of the day...we continue to struggle knowing when to administer his emergency meds. We are looking forward to seeing a new Dr. on the 21st that will give us a more clear understanding of how to handle these episodes. The nurse today said she would give a call to Children's and try to get us an appointment even sooner. This would be great as we would prefer not to have to go back to the neurologist at Mary Bridge.

Hayden speaks at a camp next week for their Jr. Highers and we will all join him. I hope this will be a great time to just be somewhere else and be distracted by the outdoors, new faces and some time together as a family. We would appreciate your prayers for the week. For Hayden especially that God would just give him a clear mind and that we would be a joy to have along and not a big distraction. We think it's a great ministry opportunity to be there as a family, but sometimes can get so caught up in family that it's hard to reach out! Please pray for a balance regarding that! Thanks again for your prayers, your encouragement and your love! This would be a lonely road to travel alone and we are thankful for the family, old friends, and new ones, that God has provided along the way.