I suppose...

Honestly it's been a while. There are so many reasons for that. Nora has been home almost three months since her month long stay in the hospital. Since then, we have had only two hospital admissions, each overnight. Before we took Nora home, I often wondered how the hell we were going to manage this. I still wonder, even after all this time, but for the most part we are killing it.

It's not all easy. After all, we have two kids under two and one with a terminal neuromuscular disease. Before anyone asks, yes, at this time Nora is considered terminal. What this means is that unless something major changes, her disease will end in death. Despite all of the progress made in the past 2 1/2 years with SMA research, a cure still does not exist. Spinraza is a godsend in that it has given her a much better quality of life than she would ever have without it and she is able to do more than Amelia ever could. She is absolutely thriving, and we thank God every day for that.

But as it stands, SMA is still itself.

I suppose some would think it odd that I am so blunt about something so terrible. But honestly? It isn't so terrible. I could spend hours a day thinking of how her life should be and how our life should be, or feeling sorry for myself. I'm not going to do that. Sure, it's hard, sometimes it's downright hellish. But we are so much more fortunate than we could have dreamed, and if we spend all our time thinking of what we've lost, we wouldn't be able to appreciate all that we've gained.

Let me tell you, I've had three children and all of them have had some sort of special need. Amelia and Nora are obvious. But of course there's the ordeal we went through with Lydia when she was a baby. Infantile Spasms are rare and very serious. We could easily have lost her as well, and she could have a lot less ability wise if the seizures had continued. They're small seizures with catastrophic consequences. In looking back, I realize how bad it really was. Now, she is doing very well as far as her intelligence, speech and motor skills go. But, there are a lot of concerns that I have in other areas and I am hoping that our team at Children's will be able to help us figure it out. She is generally a very happy little girl but there are some things happening that I am very concerned about. Right now, I am just not ready to share them but in time I probably will (no promises though, it is my life after all). Anyway, my point is that all of my girls have been easy to love. They all have beautiful loving and bright personalities and have brought so much love and joy to more than just Justin and I. That's why I share our story.

I came into 2019 with a different attitude. It's difficult because of course, this is the third new year we have welcomed without our Millie. Christmas, though difficult was a little better than the two previous, for which I am incredibly thankful.

Everyone and their brother is hearing about the whole Marie Kondo craze. Ironically, I have been intending to read her books for a long time, and now that her Netflix series is out it is trending all over the place. There are so many reasons why doing this has appealed to me.

First off, clutter makes me batty. No really though. I can not stand clutter. I'll admit that a lot of it comes from my autistic traits as well as a touch of OCD mixed with some nice Anxiety. For me clutter and mess means a lack of stability and security, and all my life that is all I have ever wanted. It is my way of trying to make sense of the crazy world we live in. And in all honesty, for the most part I live under a rock and for the most part I am completely OK with it.

The second reason the KonMari Method has appealed to me is that I am tired of spending hours trying to declutter, organize, and clean to no avail. All this does is stress me out, and with me go my husband and children. I hate that my focus is on those things rather than my family. Remember how Nora's disease is terminal? Yeah, I need to be spending time with her. Furthermore, my girls are growing up far too fast for my liking. So I need to cherish this time with them. I need to be the mother they need and I can't do that if my focus is elsewhere. One thing that this method promises is that you will not relapse back into clutter if you follow the steps properly. Oddly, you don't go room by room but rather by category. You have to start with clothing, then books, then papers, after that is just about everything else you can think of, besides the final category of sentimental items. The whole idea is that if something in your house doesn't spark joy, you thank it for what it gave or taught you, and remove it from your home.

So yeah, it sounds a little weird, but so far Justin and I have gone through all of the clothing in our house as well as our books and let me tell you, we got rid of a LOT. It's crazy how our family of four has accumulate so many possessions that we simply don't need or even want! We are continuing to work toward the steps and I believe we will have our house whipped into shape.

There is one more thing that is critically important to the KonMari method: you need to envision the life you want. The more detail the better! If you think about it, this really makes sense. In order to accomplish this, you need to have an end-goal in mind.

Life is still crazy. We are extremely stressed and sleep deprived a good portion of the time. But eventually I do think things will even out a little. Even though we've been home with Nora for a couple of months, we still haven't completely adjusted to everything. It's all a process.

Another of my goals this year is to make myself and my health more of a priority. Prior to thinking about all of this, I wasn't as motivated to try to get more specialists involved in my own care. But building the care team I want and need for my girls has taught me that things really can be different, and I want for myself what I want for them. I may never get a genetic diagnosis, and I realize that. However, I have many symptoms that aren't being addressed. I am still nauseous and dizzy a good amount of time and when I want to sleep I have an awful time trying to get there. My GI issues had gotten better for quite awhile and now they are worsening yet again. I need to make myself a priority so that I can be what my girls need me to, as well as my husband.

There's another thing. The love of my life. The past few weeks have shown me just how much he loves me, and given me an appreciation I just didn't have before. In April we will celebrate our fourth wedding anniversary. To think of all of the life we have lived in those years. As crazy as this might be, the chaos that was our life started long before we were married. Despite all of this, there is literally no one else I would rather share my life with. Justin has been one of the greatest blessings I have found in life. I do not deserve him, or any of my girls. Still God blessed me and I can not be more thankful for that. Sure, we have our moments but I do thank my lucky stars that even after the years of crazy chaos we are still just as in love (if not more so) as the day we decided to take on life together.

I also realized that yesterday was the five year anniversary of a very dark time in my life. Mito had threatened to take over and I was able to fight through it (who knew that just a few months later I would find the love of my life?!) I go back to those days...there was so much anger, so much shame, all of the fear. I still had doctors telling me I was crazy and that all I needed was a psychiatrist. I am so glad that now I have found a doctor that is at least willing to help me. Now that I am well networked in the Mito community I feel there is more hope for me to get better care.

Damn, I have a lot of goals this year.

I can't do it on my own though. I lay all of this at God's feet. Every day I pray that I can be who He wants me to be.