I was going to go to bed just now because I am purely exhausted. Long day. I know...how can Saturday be exhausting? It was, trust me. But, I read a blog that was posted to a post that was posted to a group...on Facebook. Here is the link to see the actual blog post Life Rearranged
This post made me think back to when I was pregnant and trying to learn all I could about having twins...being pregnant with them, taking home double bundles...the first year...etc. I was reading about Twin to Twin Transfusion and of course on a grave yard shift at work I talked about it with another twin mom. She would repeatedly tell me about how she was riding a bike a week before she gave birth to surprise twins. Yup, she didnt even know there was two in there. She would shoo of my worries with "it wont happen, it will be ok...stop worrying yourself". In the blog post I read the following line: "And I wish she had never assured me that everything would be Perfectly Fine, because this is the worst case of I Told You so I have ever heard of."
I then thought back to last winter when family was sitting in my living room and the conversation turned to my sons delays, specifically speech. Gray was already in speech therapy and I was working on getting Ayden in it as well. A family member said what most would say, she said something to the tune of "kids move at their own pace, some kids take longer, stop worrying"...something like that. Little did she know and little did anyone know at the time that I suspected there was something more to my sons delays than just being born early and playing catch up.
I use to think that I wanted someone to hold me and say it will all be alright and work out. But I know now that it would just be a white lie. Just a soft and fuzzy for the moment so I could stop crying for a moment and get through that day. But I would just go back to that dark place the next day. Did someone say "vicious cycle"?
As the blog said, "there has to be a better way" because "the journey deserves its credit too."
My sons almost died, I cant erase that and I will be reminded every birthday and Homecoming anniversary. Yes, I know they are here and I need to focus on that. But see, if you haven't seen your child in an incubator with wires and tubes running all over them then you wont understand how hard it can be to focus on the present without remembering the journey filled with fear and uncertainty.
My sons have Autism, I wont ever be able to erase that. No matter how hard I pray, no matter what offerings I give to God, Buddah, Allah, Jehova... it wont change. I will still cry at every step back and every step forward. I will cry for the bad days and I will cry for the good days. And my face will age that much faster from the salty teared stress and sleepless nights.
The first year was by far the hardest for me. I was alone and caring for two sick babies. Yes, they were home but they were still sick. I wasn't alright and okay. I was a damn mess. I was OCD, I was anxious, I was fearful and not a very nice person. I was not alright and okay. But people kept saying it would be. I waited and waited. I tried to force myself to feel alright and okay. But it didn't happen for me for quite a while. So while I was not alright and okay I was going to the grocery store and seeing others push their babies around sans oxygen and I was seeing posts of hour old newborns being held by mom and then dad, then grandma and grandpa. My alright and okay didn't happen until I could take my kids out in public without worrying what they could catch from touching a table or a curious person peeking their head in the stroller, because no one ever saw twins before. I was in constant fear that whatever that person gives to my sons could land them back in the hospital and they could possibly pass away. That is the fear I left the NICU with.
I don't know what my alright and okay will be with this new journey. The head of the program we attend for ABA therapy (behavior therapy for autism) asked me what was my goal for my sons and the first thing that came to mind was for my sons to be independent of me. Now that I think would be an odd comment coming from a dotting mom with a neuro typical child. As moms we should want our children to want us and need us. I know one day I wont be here and I need to die with the knowledge that my sons can live without me. I need to know that they can have happy lives without me directing their every move. So maybe that will be my time to be alright and okay, when I know I can go and it will be alright and okay for them. In the mean time I work...no, they work, really hard at becoming independent as a almost 3 year should be...and then as independent as a 10 year old....18 year old and so on.
So no, I don't want to hear it will be alright and okay because no one knows. Its false hope. Its empty promises. Its just not my thing right now. I don't want to hear about someone else's kid who has Autism and is all better now because if there is anything I have learned at our ABA Program it is that every child is different. Every child responds a different way to the therapy they are getting. I would love my sons to be the next Bill Gates (suspected) or Einstein (suspected) but who knows....not me or you.
So I will end on this: If someone you know has a baby or two...or three (lol) and they come early, don't not go to visit just because there wont be an infant swaddled in her arms while she lays in a hospital bed... go because she needs to see you. If her baby is in the NICU you still send congratulation flowers.
"Don’t ask them what you can do to help. Because she will say “Oh, nothing…” Because that is How We Do.
Do not ask if you can bring them dinner. Because she will say “Oh, it’s really okay…we’ll be fine.” Because that’s How We Do.
We women, we don’t like to impose. We’re dumb like that.
Instead…just do it. Call her at 2:00 in the afternoon on a Tuesday and tell her that pizza is scheduled to be delivered to her door at 6:00 that night. She will protest. Because…How We Do. But tell her it’s been paid for, so she can do what she wants with it. It’s out of your hands.
Mail a simple note and a $5 coffee card.
Cut two flowers from your garden, plop them in a mason jar and place them on her front porch.
Keep it simple. This isn’t about wowing her with your Pinterest search skills.
This is about Love. Support. Encouragement.
She isn’t crazy. She isn’t neurotic. She isn’t being ridiculous.
No matter what the outcome turns out to be.
Because it really will eventually be Alright and Okay. It’s just that Alright and Okay are tricky words whose meanings change depending on the details.
And you want to be there for her in the case that she must navigate a new path to Alright and Okay."