2017 did not get off to the best start. We’ve been having a lot of issues with Serafina, especially mostly in our heads, deciding what we can do to help her and to help all of us in this house living with autism.
Not only those stresses, but also having the flu lingering around for the past month has not been fun either. Kesa was sick for a good week and now I’ve been sick as well. I also pulled my back the other day but thankfully that has gotten better. So yeah, it hasn’t been exactly easy so far but I guess it never is really.
I wish I would have had time to write a reflective post about 2016. Actually, 2016 was a very awesome year in my opinion. I really loved being pregnant, well maybe not the sickness part in the beginning, but I did spend a lot of my time after I was feeling less nauseous cooking and baking things for my new cookbook and working daily at the computer getting up early before the girls and finishing it up before summer was over.
Our summer was lovely as well as we spent many hours at the beach, often going daily before or after Craig had to go to work together as a family. We would have picnic lunches at the park and we also spent many days and evenings at Grandma’s house on the beach.
Summer! How I do love summer! Everything seems to be easier in the summer. Well, soaking up the sun, getting vitamin D, and having Serafina be such a wild, outdoor, nature-loving hippie-child are just a few reasons why I love summer so. She’s just in her glory in summer! I can hardly wait for spring to arrive and our summer to be just as blissful. (Well here’s to hoping at least.) It’ll be interesting to have a little baby crawling or walking by then on the beach. I also look forward to many walks together and picnics in the park or just visiting the playground. The slow easy days of summer. Can’t wait!
Fall came along and Pheonyx was born in September. Since then I spent a few sleepless months adjusting to life with a newborn again but things got better around December in that regard. He’s sleeping well and so am I except for when I have to stay up late with Serafina. We had a good Christmas and now here we are in January.
So today I’ve been thinking a lot about 2017 and I guess I’ve seen a lot of bloggers do this, and I think I’ve done it before too. What you do is you pick a word for the year. One word that you want to focus on and kind of make your mantra for the year.
I was thinking about it and my word for the year 2017 is going to have to be perspective. I thought at first I might choose peace because boy do I ever longed for a peaceful life, but then I thought how do I get a peaceful life? The way to peace is really a mentality more than anything.
Having peace doesn’t mean that your life is 100% stress-free. It’s dealing with that stress. And so my word for 2017 is perspective. Even on the days when Serafina whines from morning till night and we have a really difficult time getting her dressed or we have to deal with giving her a bath for the 3rd or 4th time that day, I am choosing perspective.
I want to practice training my mind to remember that things could always be worse. There are moments in life when I try to tell myself that in my head and I really almost can’t believe it. But then I see story of a little baby who still hasn’t gone home from the hospital from my birth month and I can’t imagine that kind of pain. Not being able to hold your little one, not being able to be with them at home, or lay down and breast feed them. It just breaks my heart.
Or people who have disabled children that they have to take care of in a wheelchair who can never talk or walk and they have to feed, bathe, and dress. That would be heartbreaking too.
Or what about living in an abusive household? I think that would be a hard life, if you were a child, or a wife, or even a husband of somebody who is very abusive to you day in and day out. Whether that’s emotional physical or mental abuse.
There are countless examples of hardships. Everybody has their own unique circumstances, even if they don’t have a disabled or special needs child, so I just think that everybody could use a bit more perspective, trying to see things in a different light and really understanding that we’re never given more than we can handle.
I think about this saying sometimes and I truly really wonder, is this true? When we reach a new difficulty with Serafina in life and I think, really, this!? And then I remember that we’re never given more than we can handle and I ask myself, have I surpassed some kind of milestone that God thinks I’m capable of taking this on now?!? I guess I must have advanced and not realized it! (I mean that as a joke really, but maybe it is true.)
I know that we are here on Earth to grow in love and compassion and certainly having a special needs child will forever help you to be that way if you really see the gift and purpose of their life.
So these are kind of my thoughts at the moment. Thinking about how I can train my brain to always see the positive even amidst the most difficult circumstances. Even in those times when I feel like certainly things could not get any worse and I feel like any moment I can just slip into depression and want to give up. Of course I can’t and won’t but it can feel that way sometimes.
One thing I am very grateful for is my husband. We both are the only ones who can understand what it’s like to live with Serafina. And we are the only ones that can deal with her. The doctors can’t help her. The workers can’t help her. The respite worker can’t help her. There is no help but us. We need each other to be the best that we can be and just be there for her even if all we can do is offer her our love.
I do believe that the love we offer her will make changes in her slowly. And even though media portrays autism a lot of the time as super smart children who just need a little push or a special education worker, we know that our life and our girl is not like this. Serafina’s autism is different. Maybe someday she will make a huge change, but we don’t know that. For now it is a lot of stress and heartache and headache and really a lot of sadness for not being able to do all the things that we would love to do with her and for her and with our other children as well. Things like even going sledding with the kids or watching a movie together. Any simple little thing, like playing a board game or even going to visit family. Nothing is easy anymore and we don’t know if it ever will be again.
That is maybe one of the things that causes me a lot of stress. When I think about how difficult the future might be someday, or if things get worse, and what if things never get better? In the moment of hearing somebody scream and bang things, or grab at their clothes and try to tear them off, you wonder. You can’t see out of the darkness of that moment sometimes. I could let my mind think of a million things to worry about when really in the moment I have enough on my plate.
One thing is for sure, and that is that Craig and I both love our little girl. We don’t want to end up having to put her in a home but even that is something that has crossed my mind from time to time, wondering how I will be able to deal with her as she gets bigger and stronger if things don’t change and how Craig is so much older than me and maybe won’t be able to help me much longer or will pass away before me and then what will I do?
At least right now we have each other and we can take our shifts even though both of us will continue to live in a state of exhaustion. We have each other to hug and to hold, to cry with, to help each other out and remind each other that this is just a tough phase. Pheonyx won’t be a baby forever and even that will make a difference.
So I hope this post inspires somebody today. Maybe to help you think a little bit about perspective and what you put your mind upon. If you find yourself in a very difficult situation or a difficult period in your life right now you can remind yourself that things could always be worse. I know sometimes we really don’t think that’s true, but it is.
If you think about it or if you even turn on the news or scoll through your Facebook feed I’m sure you’ll find something, some other person’s life or current situation that you will realize is more difficult than yours.
We’re not special because we have difficulties in our lives. We all have them in some form or another. What I think our world needs more of is compassion and love and understanding. I wish that people would step outside of themselves and their situations more often to realize that they’re not the only ones with problems. They’re not the only ones who feel pain and suffering, deep sadness and even depression and anxiety. Many of us face it day to day, every day and we somehow live through it.
What we need more of is people encouraging each other that it’s okay and even just caring enough to hear what the other has to say for a little while. We can’t exactly fix each other, we can’t live each other’s lives, and maybe we can’t exactly sympathize but maybe we could be an ear to listen when the moment presents itself.
And if we can, I hope that we would help our fellow brothers and sisters. If you see somebody in need and you feel the inspiration inside to lend them a hand or offer them some words of encouragement or advice, I wish you would! Who knows how many people are out there dealing with depression, sadness, anxiety, fear of the future, or mental or physical illness who just need a little love and ray of light in their lives?
That’s something that I’ve always wanted to devote my life to as well. And in a way I feel like I’m not giving as much as myself as I’d like to to the world. I love having this space to write recipes and share inspiring things, but now life is so exhausting I don’t have much time to write. My life’s calling to love has been strongly focused on my family these days. It always was, but now more than ever. And not only do I love to write to share but I also love to write to reflect and I wish I could reflect on so much more that is going on so that I can look back on it one day and remember these times with joy.
My call to help the world was shifted when Serafina was diagnosed with her autism and now my call is to love and help her as best as I can. I also feel that it is my call to share her life and her struggles with the world.
Slowly and surely I feel more Brave to open up and share some of the things we’re living through daily because I hope that it’ll help other people someday who find this to know that they are not alone. That’s one thing that always comforts me is to know that I am not alone. Even if other people with autistic children don’t find this maybe it will even inspire those who don’t have a child with autism.
So for now that will be what I do for 2017. I choose to continue to see through the eyes of gratitude for every situation. Even though my daughter may smear her feces and I have to clean her I still have her and can take care of her. I was following a blog before about a mother to an autistic boy who devoted her whole life to taking care of him day and night and then one day he died. As much as it is challenging to deal with all of these things on a daily basis- all the frustrations we see her go through, all the cleaning up we have to do, all the constant worrying and checking up on her. As much as it is difficult to try and dress her and potty train her, change her diapers and to clean up constantly after her and listen to her whine, making sure there’s nothing that she can get into and having all of our cupboards and our fridge locked because she will eat anything that she finds. Living with all these stresses, I would still rather live my whole life this way than to live it without her. Whether she were to pass away or to go to a home. Craig even said the other day when he was having a hard day that he will do this until it puts him into the grave. Our hearts belong with her and we could never see her go. ❤
Whatever you are going through in life I wish you well. I just want to say you’re doing great. No matter what you’re doing just remember to always give your best because that’s all that you can do. That is what I do. And as I lay down to go to sleep at night, I pray and I soak up the peaceful feeling in our home that we are all here in our beds, safe and warm, having made it through another day. Grateful that we have each other and all that we need.