It has been a very long hard year. But very rewarding. I can not believe how much my life has changed in one year. It seems one year ago was forever ago. But at the same time it feels like it was just yesterday.
A year ago, autism was just a word. A diagnosis that meant very little in my own life. I did not even know what it really meant. It was just a word. A year later, while I still know very little about autism in the grand scheme of it all, my life circles around this word, around this diagnosis. Around my child with autism. Some days I still do not believe it. I just want my old life back. Not to say that I would trade this life in for another. But I miss friendships. I miss having time for me. I miss being a typical parent. I wish I could understand my child more than I actually do. I wish my life was not full of therapy. But I also hate living in the world of I wish and what if. This is the life I have been handed and I am doing the best that I possibly can.
I have to admit this life has become very lonely. I do not have time for friendships. The ones that I do have are because they are the ones who make me important in their lives. They are the ones that call me and text me. They are the ones that stand by me and walk beside me when I am having a bad day. That number has thinned a lot in the last year. I know it is because of me. I just do not have the time to give to having friends. It is sad, but true. This life has become lonely. I used to once meet with friends almost daily. Go for lunches or meet-ups for a girls night out. I can not tell you the last time I just met a friend for lunch or had a girls night out. It has been at least 3 months, if not longer. I no longer hear from many friends and it is always a sad reminder when I see that several of them met up and knowing they no longer invite me because I always say "I can't make it." So the invitations stopped. This life is lonely. My once social butterfly personality is now hindered by the life I have to live for my children, to make sure they get the best they can get. That is worth all the sorrow. The improvements that Marshmallow makes daily, makes every lonely, hard day worth it.
I have a busy life. But it is my kid's life that makes it busy. I spend hours stuck at home, in therapy or driving. All while Skywalker is also in tow. Every day is busy. Monday, Wednesday, Thursday & Fridays J is here from 1200 to 1600 for ABA therapy with Marshmallow. Sometimes I try to do somethings around the house, but for the most part I am involved regularly in this time with him. I am trying to pull more of his home school materials out during this time, so J can use them to work on various goals with Marshmallow. I have karate Mondays, Wednesdays and Saturdays for about 45 minutes with Marshmallow. Tuesdays are booked with OT and Speech, we do not get home till after 1600 most of the time. I try to schedule appointments for Skywalker while Marshmallow is at preschool from 0800-1100 Monday to Thursday. Sundays we go to church in the mornings. Fridays I bible study with a few ladies in the morning with the boys before therapy with J in the afternoons. Saturday and Sunday afternoons are really my only free time. The only time I have to get things really done around the house or take the boys out of the house. Until J started, K would come for therapy with Marshmallow on Saturdays, so having Saturdays open is fairly new. Not to mention we try to have family time in the evenings if possible once C gets home from work. So no, I really just do not have time in my day to meet friends any more. My life is crammed into these little 2 hours time blocks in the morning while Marshmallow is at school. Plus I have Skywalker still breastfeeding every 2 hours all day and night long. So even though I may be able to get away in the evening, with Skywalker in tow, I am tired. I am exhausted. Because I have not slept longer than 2-3 hours straight in over 2 months. Life is tiring and busy. I run all day long and still do not stop at night.
I feel like I have to explain why I fell from everyone's life in the last year. This is why. I wish I had time. I wish I could build those relationships or repair the damage done. Sadly, it just will not be happening. Not now. And not really for a while. It saddens me. I can not be the one to reach out, I need to be the one reached out to. I have learned who really cares. I know life is busy for everyone. But I was expected to drive to everyone and everywhere for so long, very few come to me. And right now the only way is to come to me. My day is stuck at home so Marshmallow can have therapy. I can not leave. I have to be here. It is my life. I wish others would really understand that. I know there are a few who do. I wish more did though. I am so grateful for the few who do get it and understand. For those that reach out to me and keep me grounded. They are angels in my life.
I have my saving graces. I have a couple of amazing mom groups and support groups that have been my outlet for the last year. I wish I could make more meet ups and build these relationships more in real life, instead of on line. But I will take what I can get. Many of these moms walk this same life. They also just do not have the time. Their lives are just as crazy and busy. I appriciate these women so much. I do not say it enough or tell them enough. But I appreciate knowing I am not alone. I appreciate every time they invite me out, or check in to see how I have been doing. Ask me how the boys are doing and how appointments and such went. I wish I could form these relationships more. One day I hope to have the ability to do so again.
So for now, this is me. I am still struggling with everything happening in my life. I mourn the life I once had. But am grateful for the life I do have. For the ability to be my son's biggest advocate. I know that without everything I have been doing and everything that I push to do for him, he would not have come as far as he has in the last year. Autism is for life, but we can make it the best we possibly can for him. I work daily to give him the best I can. I know some days I fail as a mom, and certainly fail as an autism mom. But I am still here. I am still standing strong for my son. I am standing strong for Skywalker too. I will be his biggest supporter too.
I am here, I just can not do it all. I have to learn to be okay with where my life is currently. And what everything that has happened in the last year really means for my life. It has been a roller coaster of a year. And I know this roller coaster will not be ending any time soon.
So for now I find my happiness in the small things of everyday life. The little things that make me laugh and smile. I have to find the joy in all things, not just the big things. Without it I would never get from one day to the next. I have to find a blessing in everyday.
Moments like these. Having a great day at the zoo with a sleeping sweet pea on my back. It is love. I will do anything for these boys because I love them so much. It is love.
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