I’ve been realizing lately how much underlying fear I have. I don’t consciously recognize it in every day life, but it’s been coming to my consciousness these days in my physical body as an awakening.
I noticed that I was getting more cramps in my body and more back and neck pain when really, I haven’t done anything to hurt my back or neck. That’s when I realized that I have been internalyzing stress and fear.
My fears are many, but my main fears these days surround Pheonyx. I watch him all the time and always want to make sure that he is ok. I feel very protective of him and afraid that I might “lose” him.
Then I realized that this is more of a fear of losing him to autism.
Seeing him achieve his milestones, babbling, pulling into standing, pretty soon standing on his own and walking, makes me afraid. I feel like with everything he is going through I am amazed and proud, yet also so afraid it might go away.
Having my last baby almost 6 years ago it is hard to remember what milestones they should hit and when. With Serafina too, she missed a lot of things and wasn’t exactly developing normally, and its been almost 9 years now since I had Kesa. I cant remember having a normally developing baby. I also don’t like to go googling things either because I don’t want to make myself worry more.
I remember losing my little girl, the girl I imagined her becoming. She was bright and curious and explorative of her environment. She said some words and babbled sentences that made sense to her, though no one else (Craig and I included) could understand what she was saying.
Then we watched her completely change and enter a world that we couldn’t come with her to. We see her live her life day by day and we wish that we could understand her and help her. It’s a pain similar to what I imagine losing a loved one is like. I haven’t lost anyone super close to me, and I know that’s much worse, but this is like a death in the sense that you can’t reach the person you love. They are unavailable in so many ways even though physically they are here with us.
I think a bigger part of me knows that Pheonyx is fine. So far there seems to be no red flags at all with him. I wonder what those were for Serafina though. Sometimes my mind doesn’t even want to go there… back in that past there are moments that I don’t want to relive for the sheer grief of my heart.
On a day to day basis we don’t stop to recognize our stresses. Most days Craig and I just go, go, go. We do what we have to do to raise our family and we come last, though we are hoping to find time for self-care too when we can. I have been feeling especially grateful for the mornings Craig has taken Pheonyx so that I can sleep and even an extra 30 minutes is a blessing! The fact that he is so good at helping me to bear through what we have to and not complain. He is so good at being my rock in times of weakness and I hope that I can be his as well in our partnership through life.
We came into this together. We got married because we were drawn together on a deeper level. To have these children and raise them is a big part of our life’s purpose, even though some days it feels like the next bump in the road just might be too much. It’s these times when we gather greater strength, greater compassion, and greater love.
Sometimes I see my children and just can’t believe how much of an honor motherhood (and parenthood) is. These helpless beings who we grow and nurture and care for, not just physically, but mentally and spiritually for their entire lives. They are so dependant on us to steer them through childhood onto the right course and hopefully leave them with as much of their own identity as we can. Not to tell them or train them as we want them to be, but to give them an environment to grow up in to be themselves. This task to me is no less than completely intimidating!
Another fear I realize that I have is of enjoying him fully. Besides being tired a lot of the time from regular life, I also feel unable to let myself completely enjoy every part of his development because, what if it all disappears again?
Deep down I know that this is selfish thinking on my part. I believe that Serafina was meant to end up special for a reason. I believe that she has a lot to teach us, and the world, and so do all autistic angels. I know it must be frustrating for her to live with autism but I don’t believe that she is unhappy in her life. I do pray that things will get better for her and that she will learn to communicate and do normal things, like be able to wear regular clothes and use the toilet someday. Speech would also be a huge blessing. These are the things you can’t control but can only leave up to divine will.
My heartspace for her is tender. For each of my kids, I hold this tenderness, but for her even moreso because I can’t help her back to our reality, and I can’t exactly join her where she is. Sometimes the stars align and we are in a reality together, but it doesn’t always happen so easily. Being busy with a baby has also given me less time with her. Sometimes the busyness of my life makes me feel so down with guilt that I can’t do enough individually with each of my children, but I do what I can, when I can. I try to remind myself that I am doing my best and I give the rest up in prayer when I hit my pillow at night. Some things I just can’t change or control. Some things take time.
To all of my fellow mothers and parents who feel stressed, guilty, depressed, even afraid, you are not alone. I do believe that most of us feel this way in some way or another and will all have different times of darkness or feeling like we just aren’t holding things togther well enough as wives and mothers.
To my fellow autism family. You know what it’s like. It’s hard. Especially for the ones who have more children in the family to raise aside from one child with autism. All we can do is our best. Take our breaths, and hold onto faith in a brighter future for our special children and for ourselves as well.
(I hope this makes sense coming from a super tired mom just trying to sort out her mind.) 🙂