Mixed emotions, big birthdays and God's love

It's been a while since I've had the chance to write. That should give you some indication of how things have been going. It hasn't necessarily been bad, just....let's see, how shall I describe it....WHEW I think would be the most descriptive word I could use.

I knew coming home from the hospital would be an adjustment, but it's also been quite a fresh dose of reality. Freddie has settled into school and gets excited when we arrive each morning. It's still tough getting him up and ready to leave each morning by 7:45. Nana comes every day at 6:30am and basically takes care of getting him ready. Fred is usually out of here by 7am, if not earlier and I am trying to catch just a few more minutes of sleep since Logan is up quite a bit most nights.

Once I drop Freddie off at school, I head back home and sometimes have time to shower before it's time to give Logan his shot each morning around 10. Usually Nana is feeding him his cereal around 9, which he's doing okay with. He does much better with Nana than with me regarding the cereal, but either way we're getting about 6 tablespoons in him each day by spoon. Little steps.

We're actually doing okay with his steroid shot too. We have our little routine, which helps, and he doesn't cry too bad each time. At least I know that by 10:30 he has had all of his medicine for the morning, which is an accomplishment. He takes Zantac and two seizure medications by syringe each morning around 7:30 and I can't say that he likes any of them, but we get through it okay. After the shot we only have 2 medicines to give in the early afternoon and then nothing to worry about until bedtime when we repeat the 3 again. It's somewhat comical, because Freddie has always been great at taking medicines, such a blessing. But Logan will likely be the one we have to fight with and the one that will have to take the most. God has quite the sense of humor.

The nights are somewhat taking their toll. Nana is switching off and helping out as often as she can, but it's hard to keep up with the boys during the day on little sleep at night. Logan usually wakes up around 1:30 or 2 with a seizure or just hungry (a side effect of the steroid is that we can't fill him up which is not such a good problem to have for many reasons). The basic scenario after that for the next 2-3 hours is he frets and eats off and on and may have another seizure. He usually settles back down somewhere between 5 and 6, then Freddie wakes up between 6 and 6:30. It feels like a vicious cycle, but I'm hoping it's just the steroids and we'll get back to some form of normal in about 6 weeks. At least everyone sleeping through the night again.

Other than that Logan is doing pretty well. The neurologist called the other day - the actual doctor and not the nurse - nice surprise. He used the words "fantastic" and "superb" when describing Logan's latest EEG. I literally jumped up and down in the den!!!! I realized that we haven't necessarily had a huge amount of good news regarding Logan's condition over the last couple of months. He also said that he didn't actually see any epileptic activity on the scan. It was wonderful to hear and I truly felt the power of prayer and God at that moment. I'm not exactly sure what it all means since Logan is still having anywhere from 3-6 seizures a day, but we have an appointment with his doctor in the morning so we can try and understand where we go from here. The seizures actually look more like what he was having originally, which is not much of a surprise from what little we understand about his condition. The infantile spasms seem to be gone, but there is still the issue of his brain malformation. Oh the journey we are on.

I have to say that the last week or so has been filled with a mix of emotions. I bounce from frustration to unbelievable joy to disbelief to somewhat numb. My mom asked me last night how I felt about what all had happened - was I angry or bitter or did I feel cheated. I could answer her truthfully when I said that I didn't feel any of those. I can't say that those won't come at some point during all of this, or maybe many times in the future, but for some reason God decided to hold onto those emotions for us for now. For me at least, he replaced them with the comforting knowledge that this is exactly how our life is supposed to be. I don't necessarily understand why, but I know that it's right. That doesn't change the fact that from time to time the only way I can describe how things are going is just that it's hard. Just plain hard. I'll have one of those days when I just don't think I can go much further and by the next morning God has given me a renewed sense of whatever it is that I need to keep going. I wish he would give me back the ability to digest caffeinated coffee, but I guess that's for my own good also.

The thing I'm having the hardest time with still is feeling like I should be able to handle this all on my own. We are truly exhausting all of our family between the kids and the business. We are trying our best to get a handle on things, but it just doesn't seem like we can make big changes very quickly. And although we have a million people that would love to take Freddie from time to time, I don't want him to feel like he is being pushed off to someone else every day and that he is not wanted here. I can't ever seem to shake that feeling. I know he would be fine, it just kills me to think that he might be sad because Logan is here and we want him to go somewhere else. I'm sure most of that is just me and my feelings, but if there is a chance that he might actually feel that way....I just can't take that right now.

I also have wonderful friends who keep telling me that adjusting to being home with the kids is something that will take a while and that it's okay that I don't have it all figured out yet. I just keep feeling like I need to do something different, but I don't know what. My parents took both kids for two afternoons this week just so I could get applications sent off for Medicaid and a program for assistance with Logan's liquid gold medication he is taking now. It's like we need a full time nanny and a full time assistant for handling all of the medical stuff! I have to keep telling myself, ONE DAY AT A TIME.

Then there are the unbelievable blessings that keep coming. Our friends are truly too kind. I am typing right now from our bed on a brand new little jewel of a device compliments of the Foxes, Brocks, Fossets, Ryans, Blairs and Jaworskys. I still can't believe that they did something like that for us. Not only that, but friends who have done things....and you know who you are....that probably no one will ever know about, but they are absolutely more than we deserve. I have cried more in the last week out of sheer joy and disbelief than because of anything else. I feel like I keep saying it, but the prayers, messages, cards, calls, meals, emails, support, love, kindness, generosity and selflessness that has been showered upon us is undoubtedly our precious Lord at work.

I have been itching to write this week and haven't been able to find the time. There is so much on my mind to type and yet, I just can't get it all on here fast enough. I think I could write all day every day and there would still be more. I never thought this would be something that would become so important for me through all of this, but God works in mysterious ways.

One major, huge event this week is our sweet little boy turning 3!!! I can't believe Freddie is going to be 3 years old on Friday. He is such an amazing little boy. I can't even express in words how unbelievable he is. I know little boys are supposed to be handsome, but we have the most BEAUTIFUL little boys. Freddie is even beautiful when he looks at me with those devilish little blue eyes before he does something he knows he is not supposed to do. Logan is already learning to cut his sweet little blue eyes at us. We are so in trouble.

The last week or so has been pretty tough on everyone, but we are weathering the storm. I called to schedule Freddie's tonsillectomy (yikes), the business is going better than we could have hoped, Freddie is doing great at school, Logan is moving forward and we will hopefully continue to get good reports. There is something so much more to this than just our child being diagnosed with a rare condition. God is so hard at work here, I just hope we are doing our part. In a strange way through all of this I seem to be finding myself, my passions and my voice. I had somehow lost those to a degree. It feels good to be me again, whoever that is.

People have mentioned that it sounds like God is working through my fingertips. Maybe then, you'll forgive God for being all over the place tonight with the thoughts. Sleep deprivation and the fact that I haven't had my Moose Tracks isn't helping. I'm not sure about the blog, but I can assure you he is working in me and our family. Lately it seems that the message God is trying to send to me is that he is still in control, however we have responsibilities that we must fulfill. At the same time, we must look to him for guidance on what next steps to take and realize that the devil is at work in all of this too. I forget about that little rascal sometimes, but he's there and squirms his way in just when you don't need him the most. God never promised for everything to be perfect, easy or as we would have it, but if we will just trust in him he will never fail us. Easy words to type, say and even feel from time to time, but because the devil is as powerful as we allow him to be, sometimes we take the easy road and just settle on "why me".

I caught an old episode of 20/20 tonight and the story was about the little girl who lost her arm to a shark attack while she was surfing. She is unreal. At a very young age and a life altering injury to overcome, she made the comment that it was up to her how she handled it and she decided she would have a positive attitude. She also mentioned that one of the first things she did while still in the water after the attack was to pray. So young and so much to overcome, but she speaks volumes and has touched millions of lives in just her actions.

And here we are yet again. The boys are all asleep and I feel that sense of peace that I've been missing. I can't believe how powerful typing out a few words can be. I'm sure I'll question my decision to stay up this late when Logan wakes me in a couple of hours, but I know God will help me through.

May God watch over us tonight and be with all of those who need his peace. Sweet dreams to my angels - all three of them.