Sep 19, 2016

{i've left you on the edge of your seats for a year!}

So, hi. I have to say, I just reread my post below, for the first time since I wrote it - and that was seriously intense. I didn't realize I had left things like that on here. I'm glad I was honest still, but wow. More and more I just long for transparency, even if it means I might disappoint people. Or risk being misunderstood. I wrote most of this stuff below a few days ago, and I am so tempted to delete almost all of it - leaving out everything personal and just telling you the facts. I'm going to talk a lot about Jesus, so if you don't want to hear that you can skip to the bottom and I have an Isaac update. But I just don't feel like I can give you an update on my family anymore without trying to tell you some of my heart behind everything. Its a mess, though. Word vomit everywhere. Maybe it will feel too shallow to you. Or weird. Or just confusing. Or maybe it will be encouraging. I'm so overwhelmed by all that I'm feeling, I have this pit in my stomach thinking about how I can't even begin to say a tenth of what I want to. I'm typing this all up quickly, hoping it will just flow from my heart. I don't want to overthink anything. I've been talking to Jesus about how to share about our year. People have asked how we're doing, and in more casual conversations I've said that we're doing really well. And truly, we are. I have never felt more empowered and content as a mom. Even though the craziness has doubled - maybe tripled with Levi being born.

So a little refection here. I've shared some of this so it's probably not a huge surprise. My last couple years have been every emotion everywhere. I would go through long stretches of time feeling so victimized that it was hard to be around other people. Especially other moms. I was exhausted. Noon would roll around and it felt like I would never make it to the end of the day with enough energy to take care of Isaac. So with two it should be even worse, right? But my heart feels nothing but gratefulness. Because I look back now and realize that Jesus changed/is changing me without me really consciously trying. That sounds like a crazy person, but its true. I never would have believed someone if they had said it before. Its been so effortless - but also not really, because we've been really intentional this year. We've made a lot of big life changes - it would maybe seem like we've given up a lot if we sat down and told you everything. We've reprioritized a lot, but its all been worth it. Reading what I've posted in the past feels like a different person. All of the mental strain and anxiety that used to zap my energy and leave me exhausted and reclusive is left with peace. Some days still feel like we do well to eat. And just get by in dirty clothes. And not get out of the house. I still want to get better, but even those days are so precious. I value so much in my boys, and each day we spend together, even if its just at home - with all of my good intentions and nothing gets done, I am so happy for the day. It's amazing. And not really me or natural at all.

So last fall - it was one of the lowest lows of my entire life, but also in the middle of it all was the little joy that is Levi. It seemed like the worst timing, but he brought something sweet to the season. I don't know if I really ever shared this - maybe it was implied, but Daniel and I would look at Isaac at points last fall and I really thought I was watching him die. Each day it seemed like he was getting worse. He kept digressing. There was a several month period where he got so weak he couldn't walk and I began to think I would never see him walk again. I really was preparing for him to leave us, and I got a little crazy. Everything was so out of my control. I was so angry and wondered why God would make a child suffer just to teach me a lesson. I really didn't understand Him at all. I felt completely broken. So out of control.  I don't know where I'm going with all of that, because obviously, Jesus saw me, when I accused him and had given up praying because it really didn't matter. None of that was true. I started to see the Fathers heart towards me. I decided for truly the first time to try (its hard) to read my Bible like it was for the first time. So many people have such wisdom, but I didn't want to look at it through others opinions for the moment. I wanted to read for myself and understand. Leaving my personal experience out of it even, and just see who HE really is. I don't even have words to explain this year. Its not all about healing, though I do believe Jesus is a healer. Its not all about everything going perfectly for me and life just being easy, although I don't believe God is the author of sickness or so many of the hurts I've always accused him of (I know that's a hot button, I'm sorry. Being overly real here). Its about relationship. Its about knowing He loves me. And even if I'm not experiencing what He says, I am growing, and his word is bigger than my experience.

 I don't like posting a lot about 'religion' because its so personal to people. I will chicken out of so many conversations because I don't want to offend. I don't like confrontation. I don't want people debating with me or each other in comments. It often looks angry and scared. Scared to be wrong. Or scared for me that I am wrong and not understanding things. And I don't want to be looked on as crazy, right?! I like maintaining just...a normalness. I don't have to stand out. I'd actually prefer not to. No making a scene. I stress over not wanting to sound insensitive. I am hyper aware of how everything that leaves my lips - or that I type would come across to a dozen different people. I'm just leaving this with a bunch of open ended, half thoughts, but you probably get a bit of where I'm coming from...

I'm saying all of this to just be real with the roller coaster of the last five years and how last fall, it finally was really breaking me and how I feel none (sometimes it tries to creep back in, but not for long) of that now. I'm waking up each day and I know what my life looks like. I should be so afraid. So unhappy. So scared, but I'm not.

Isaac has had an incredible year. Everything has multiplied. At the beginning of the year he was too weak to walk, and last night I watched him run around our yard with the neighbors playing soccer. We have conversations. Each day he just freaks me out with all of the new little sayings he is picking up. His mind is so sweet and amazing and he's growing - and is just a little person. He turns 5 in a few weeks. He is absolutely obsessed with jousting. And organizing his motorcycles. And pirates. And sports - much to the dismay of both of his parents. He has had a banner year. We have watched him flourish and watched his blood counts go from this fall - bone marrow failure, to seeing them increase, and to go six months without a transfusion (a miracle).

So I guess this is where I'm getting to, finally. Isaac was originally supposed to have his bone marrow transplant early in March of this year. He had a central line put in (still has it) and everything, but he was thriving, so we pushed back and it was delayed. But the last few months things have dropped again. He still does so amazing - everyone says he looks healthy and is doing SO good.We still have him in school. I think he IS doing awesome. But then we get blood draws that are still very low. Our doctors reached out to us in July and they were wanting to talk transplant again. It has been the dreaded word of the past 5 years. Anyways. We talked a lot, and Isaac is scheduled to have his bone marrow transplant towards the end of October. He has a 9/10 match. We don't know anything about his donor yet, but we are very grateful he has one! If you see us in the next few weeks - we don't mind talking about it, just please be aware that Isaac is always listening and we are slowly working towards talking him through things, but he still doesn't know much yet. He is such a smarty...

Some people know and some don't. It's a good thing if you don't have to know. But a bone marrow transplant, on paper (each kid is slightly different) means hospital workups a few weeks prior to transplant to make sure there are no infections, surprises etc...Our workups spread over about 2.5 weeks. Then chemo for a week, then the BMT which actually feels like just about the easiest part of the process. The donor cells go through the central line and start growing new bone marrow. Some kids have a difficult time with the new marrow grafting. Or antibodies want to attack the new cells. Lots of intense stuff there. Our doctors are big time considering Isaacs kidney since the whole process is hard on your body, and can be really hard on kidneys. A lot of you know that the (amazing) doctors that we have also aren't anywhere close to home, so I will be in Ohio with Isaac from October until an undetermined time - the goal is February. Our family will be divided for awhile, and I'd be lying if I said I haven't cried at the most random times at the thought of being away from Levi (and of course Daniel) - but we are going to be okay. More than okay. We are going to have some really long days ahead of us - a lot of them wont be fun. I would never choose to be in a hospital over Christmas, but we are going to make it the most amazing time we can. And I have nerf guns and have been working on my dancing skills :) Isaac will never be bored. If we have to be there, I'm planning to come out as pure gold. To grow, and love and be strong and expect miracles all along the way. It sounds unrealistic on paper. Time will tell. Whats for sure is that we have quite a crazy fall and winter again ahead of us!

So now you all know. We have a page up on Facebook to keep people updated. Its private, but if you want to follow along on the crazy journey, request to be added and you're in! We wont be updating much on instagram or our usual facebook pages, or even my blog, so that will be the way to keep updated if you would like. Here's the link: Isaac Gets New Blood

Thanks for bearing with me and caring enough to read everything. So much love to you our family and friends <3