I think the word “recovery” conjures up an image of BETTER. When you hear that word you imagine going from darkness to sunshine, and I want to sort of pull the curtain back on the truth.
I was blessed with 2 neurotypical kids at birth and their childhoods are still one of my favorite periods of my life. But that does not mean that it was fun. It was exhausting. It was draining. It was challenging and those were the good days.
My days were filled with toddlers underfoot who wanted me 24/7. I could never take my eyes off them. The nearby park was created on a bed of pea-sized rocks and I and the other mom’s were constantly fishing rocks out of our kid’s mouths. They were always eating play-dough, biting the ends off the crayons, ripping books, letting the milk drip-drip-drip out of their sippy cups just to watch the puddle form.
They will fill a sink with that fancy $7 foaming hand soap that you just bought the minute you turn your back. My daughter once filled a grocery bag with water and brought it to her room so her doll could have a “swimming pool.” My son would open and closed the fridge door 30 times a day either to get himself some cheese, bring ME cheese or check to make sure we still had more cheese for later.
They want you to entertain them ALL DAY. They want you to race cars with them, pretend you are sisters going to a dance together, take them swimming, have tea parties and on and on. And God forbid you even try to play one round of Candy Crush when they are quietly watching a TV show. The next thing you know you have two kids asking: How do you play this? Can I try? Can I hold it? Why did it do that?
When Sara was at her worst and lost to us in the fog of propionic acid, she just seemed to take up room in the house but was no longer that interactive with us. She was no longer peppering me with questions, getting into mischief or making the same demands on me as a parent. But it was still exhausting. I was parenting her different, but it was not easier.
Now my time was spent trouble shooting her issues. It was 24/7 trying to find ways to help her. It was multiple appointments with teachers and Doctors and therapists. On some days I had to run her through 2-3 therapy sessions a day.
It was cooking special foods, helping her with all aspects of life like school work etc. Asking Sara to clean her room was exhausting for ME as I had to micromanage every aspect of the task. It was setting up white boards, dealing with constipation, nausea, fatigue. Running through hoops trying to make her comfortable and walking on eggshells trying to avoid triggering a sensory meltdown.
But, if I wanted to sit on the computer for 4 hours and play Candy Crush – she left me alone. She did not pester me. She did not ask me a million questions. I did not have to worry that the silence meant she was up to something. Nope, she would just sit in that therapy swing, or lay in her bed watching TV for hours unattended. It was a different world than the one I was used to. Not easier – just hard in different ways.
When we started this protocol and she “woke up” it was not just rainbows and sunshine. It was a period of time when BOTH of those worlds collided. I was now still a mom struggling with all the demands of her issues AND I was run ragged by a child who would not leave me alone and who wanted to learn how to make slime, go shopping, play cards, and bake cupcakes. She was full of life and curiosity and personality again.
She became difficult, went through ALL the emotions and all while still needing me to help keep her focused when cleaning her room or have me rub her tummy for hours if she was in pain. She still had bad days in bed but now she was calling my name every 30 minutes asking me to bring a snack, or pass her the remote, or just to make conversation.
Many of you have young kids who may have been like Sara, not very interactive or very content and well mannered, and now they feel like they are becoming unmanageable. Maybe their behavior does not match their age and you may be frustrated or even embarrassed by how they are acting. But, these new behaviors are in fact RECOVERY.
Please start recognizing them for what they are. Please start trying to see them in a positive light. Kids by nature are curious and want to explore the world around them. They learn by trying things out and seeing cause and effect, asking questions trying out their ideas. They are willful and determined, and often do not know the “rules” of society and will test boundaries and push your buttons. They are creative and imaginative which means they will get into messes and get lost in their play time. They are loving and empathetic, which means they will want to connect with you, have your attention and be engaged with you.
Curious, determined, creative and loving are great qualities and we need to start embracing these as positives even though some days you feel like you are just barely hanging on.
Recovery is beautiful but it can be exhausting. It can feel like it is harder. It probably is HARDER than life was before, but that is OK and in the long run it will be worth it I promise you.