So many things have changed since Serafina’s symptoms of autism has really come out and she was diagnosed with autism at nearly three years old (only seven months ago).
Today I cleaned up a poopy room for the third time in two days. I have been trying to get her to keep clothes on, instead of wearing backwards sleepers, but any time she goes in her room and we let her keep her clothes on or forget to tie up one of her sleepers, she strips naked and poops on the bed or floor and smears it all over herself and her room. It has been really challenging.
Tonight I gave her a bath again, this time I didn’t cry. Yesterday I did.
It is hard when all you want to do is read a story to your other children and give them a wee bit of attention in the day, even though you are exhausted and you have to get up and clean up a disaster again. You have to watch your other children see you fight to hold back your sadness and be a strong woman and role model.
I never imagined life would ever be this hard. When I imagined growing up, getting married, having kids, and homeschooling, I knew that it would have its challenges, but I never imagined anything like this. The fighting to do what you know is right for your children. The fighting to be a good example. The providing a clean home and home cooked meals. All of that was so easy to me before Serafina’s autism was thrown in the midst of it. Our picture-perfect life somehow went down the tubes and I feel myself questioning so many things sometimes. Mostly, it is a balance of fighting for and sticking to what I believe in and wondering what needs to change or what I need to let go of.
I am a strong woman. I have always been super patient. Both Craig and I are very relaxed parents and would never think to raise our voices or our hands to our kids. We believe in the power of our thoughts and our actions and we live life day and night to be the best parents (and people) that we can be, though it can be oh, so hard. It is hard for me to deal with it all day and night, and even though he wouldn’t say a thing, I know it must be hard for him to have to work and then come home to either help take care of Serafina, or listen to how hard my day was. I wonder at how he can be so strong for us all, and at the same time, I hate myself for worrying if he is really dissatisfied in this situation and in our marriage. I worry that we won’t make it through this together. This is one tough battle, and I have been through a lot in my young years.
What is the hardest for me is knowing how hard it is for my girls. Having to constantly ask them to help out, pass something, or watch Serafina. It is literally at least a two person job to watch Serafina. She is fast and curious and can get into trouble in a matter of seconds. What is hardest for me is knowing that they must secretly resent having autism in our family at times. Although they never show it, I can sense it intuitively. When Serafina is throwing a fit and Kesa goes quiet, or when I ask Autumn to help me out for the millionth time.
Tonight Autumn admitted it and said (not in a rude way, but in all honesty), after watching me clean up another poop disaster, “Sometimes I wish that Serafina was never born.” I asked her more about it and she said that life was easier when it was just her and Kesa. It is true and she knows it. I told her though how powerful our thoughts are and that we must never think that. I told her that if Serafina left us tomorrow it wouldn’t be what she really wanted.
I never want my girls to feel this way or have these ideas in their head and so I try as best I can to never think or say anything like that. I try to never feel or show that taking care of Serafina is ever a burden. Even when I am wiping down her room and running the bath for the millionth time, I try to add humor to it, or see the bright side, sing a song, or just look at my beautiful angel. I love my little girl and never want these more trying moments and tests of faith and character make me forget about all of the wonderful things about her and how much progress she is making daily.
A few days ago Serafina actually did the “more” sign in sign language. This is something that we have been working on (albeit not always consistently) with Serafina for months. She finally did the sign for “more” in her room with me while I was tickling her and I was in disbelief. I honestly wasn’t really sure that she would ever sign and sometimes I do wonder just how much she understands. She did it again the next day and has been doing it a few times a day the past few days.
I hate that too. I hate when I doubt or don’t believe. I hate my lack of faith in this situation when it wants to creep up, but I know that these are huge learning curves and big time spiritual lessons in the power of thoughts, energy, prayer, faith, and positivity. I try. Boy, do I ever try.
These days have been so hard for me too as I struggle with what to write anymore. I don’t really know who I am right now, or what I want to write about. I struggle with wanting to share recipes and positive stuff (although this is what I love) because I don’t really have time and sometimes I just prefer to write like this, what is really going on and how I feel. Even if it is not positive and uplifting, it is my reality and it feels good to just type it out and let it go out of my head, into words and in writing for me to stare back at; to admit how I really feel instead of being so damn strong and brave all of the time. (I am human too.) I also hope that in writing about some of our reality with autism that some other parents and families out there could know that they are not alone.
I have been trying really hard with Serafina these days. I have been trying to do her hair and get her dressed (which are huge accomplishments with her). This is also hard for me and something I don’t even attempt to do sometimes because it is just easier to not make extra work and hardship, but I want my daughter to grow up and be as “normal” as possible. At least I want her to have her hair brushed and be able to wear some clothes.
Tonight I let her walk instead of pushing her in the stroller. And she doesn’t walk, she runs. She was overjoyed as she ran like mad blocks away from our house, me trying to keep pace beside her. She went all the way to town to the grocery store and explored a little. (Something she never really gets to do.) It is easier when one of us stays home with her, or she stays in the car seat if we have to take a trip into the city, but I hate that! I hate having her be left out of so many family things, even going walking, because it is easier for us if she is restrained in her stroller, her car seat, or a shopping cart. I know that she is going to have to walk on her own sometime and I want her to learn. I want to believe that she can do these things and I want Craig to believe alongside with me.
One other thing that has been heavy on my heart is the fact that my girls are growing up. I know that it is time to put the stroller away soon because Serafina is getting too big for it. Even Kesa still hitches a ride on it and it is getting ridiculous (she is going to be seven this June). It is hard. I don’t want to let go of my babies. I am not ready yet.
Craig and I were planning for one more child someday, but sometimes this all seems too much. Thinking now that I may be done having children is also something that is hard to swallow. Another part of my life’s dream is being pulled from underneath me. I wanted this. I wanted to be a stay-at-home, homeschooling mom. I wanted to blog about our happy, relaxed days together, living, learning, loving, and eating. I had a picture of what it was going to be like and I even had it manifested as my reality, but now things are different. I know that it is still up to me to see the good and to create the life that I imagine, but it is a million times more difficult to see the good and stay conscious in the trying times (which are at least 50% of the time). I know this, but I also still know that it is possible for things to be great and life to always be beautiful, if only I could stay conscious of all that we have to be grateful for, the progress we make daily, and the love that knits us together as a family.
So should I be sad because my daughter can’t talk and is sometimes a burden for our family? Should that make me want to crawl into a depression and wish she was never born? Never! I hate when people pity me and try to give me helpful suggestions. It is hard. I know people mean well, but it also puts a huge damper on my positive outlook. When people start asking about how hard it must be, or point out difficulties I am likely to encounter in the future, it drains away all of my faith and positivity. At least it tries to. It is not like I don’t know those things already and live and breathe them every day. It doesn’t help when people throw a worry-wrench into my life.
So these are my reflections for the night. I just felt like I had to type. Tonight I go to bed grateful for our family and how hard each one of us works to keep it happy and harmonious. The poopy mess is cleaned up and the girls are playing nicely together. My husband is on his way home from work early and tomorrow we begin our weekend together.