Remember Who You Were On This Special-Needs Motherhood Journey

REMEMBER WHO YOU WERE

I am currently working on a book on self-care, a series of lessons I have learned (and continue to learn) on my special-needs motherhood journey. I’ll be offering some of them here, on this blog. Feel free to let me know your thoughts here, or on my Facebook/Instagram pages.   Here’s the first one…

Remember Who you Were

Any type of motherhood, special needs or typical, causes women to feel like they’re losing themselves. It’s the perennial question of balance that women face between identity (work) and family. The constant work of caring, and ultimately being responsible for another human being, leads us to question, and then adjust our identity to this new life. This takes on a whole different meaning when you have special needs children. The care can be daunting. I feel like I am still adjusting, my GPS constantly on recalculating … I once wondered if I even wanted children at all and what I got was children that required more care than I would ever imagine.

What helped me in daunting and overwhelming moments was to remember who I was. My circumstances had changed drastically but I was still me at the core and I needed to reaffirm that. In the midst of such drastic change, I needed consistency.

I went to things that reminded me of myself, pre-kids. I got out my old cassettes of Sting, my all time favorite musician, and started listening again. I also started reading his autobiography and it really helped me to reconnect with Nellie pre-kids. It also reminded me of the time I went to see him in concert with my friend Maxine back in the 90s.

After my oldest was diagnosed, I went back to museum work. I needed a semblance of normal life again. I was coming to terms with the diagnosis and needed to tap into the part of me that was untouched by it. My life before the diagnosis… museum work. Other opportunities that fed into the pre-kids Nellie also began to surge. I taught a class on Puerto Rican art and lectured on Latin American art in various libraries in the New York Public Library system. All of this helped me reconnect with what I still continue to love: art and art history. I felt like my old self again and this fed my soul and helped me be a better mother to my oldest.

After Dan was diagnosed, I went further back and started screen printing and sewing again, passions from high school and college. I even opened my own shop online and started selling my screen-printed and reconstructed clothing. This further solidified my identity and in turn helped me be a better, more at peace, happy mom. I was drawing from my past and taking inventory of the things that made me really happy.

In the midst of the loss I was feeling, this reconnection to my old self, offered me joy.

What can you tap into from your “old self”, your “pre-kids self”, that can positively ignite you as you live in your present circumstances?

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“Get Up”: How God Always has the Last Word Even if my Son Doesn’t Have Any

 

GOD HAS THE LAST WORD

A long time ago I read an article written by a speech therapist that stated that children on the autism spectrum rarely speak after seven years of age. Along the way, In my quest to be at peace and accept Daniel’s autism, I stopped praying for his healing. I didn’t stop praying that he would grow into his full potential but I have to admit that I resigned myself to perhaps him not ever speaking.

Daniel speaks in other ways; he hums snippets of melodies that he hears in church, at home, and even in school. He’s extremely affectionate and very fluent in body language, and he has even said a couple of words, years ago, words I have not heard in a very long time. Until a couple of months ago.

On weekends Dan wakes at 5 or 6 o’clock in the morning. We always try to delay getting out of bed before 7:00 AM so this Saturday, when he woke up at 6:00 AM, as usual, we told him to lay down next to mommy and daddy, or sit in the chair in my sewing area, anything to stop him from running so early in the morning. We stalled him until 6:30 am when he came up to my face and said GET UP! “Get up”, as clear as day. I was stunned, we were shocked. I turned over to Jon and he was like , “did he just tell you to get up?” It was wonderful to have someone bear witness. So I got up like a flash and gave my, then almost 11 year old son, whatever he wanted.

Get up! Perhaps God was trying to tell me something. Maybe he was trying to awaken my faith, “get up Nellie and continue to pray. There is nothing impossible for me.” Why shouldn’t I pray that God fire up the part of the brain that controls Daniel’s speech? What if God was just waiting for me to ask? What if it wasn’t too late?

Ultimately I’ll be fine whether Daniel ever speaks another word or not. But I do have to remember to forget the timetables that therapists go by. It’s all about God’s timing, because at the end of the day, God has the last word!

“We humans make plans, but the Lord has the final word.”  Proverbs 16:1

 

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How Dan Incarnates Me as I Tend to His Body

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How to Put on a Shirt

This constant tending to my son’s body can be overwhelming and draining.

The other day I came home from a curatorial walkthrough at one of the museums I work with. The art and the curator were absolutely fascinating. I work in cultural spaces where I consistently having conversations about art and ideas, my intellect quite engaged… and then I come home to this…to this repetition, the constant training of putting on a shirt, or the brushing of the teeth. Still, at 11 years old, I’m still teaching Dan how to wipe his butt! I would imagine that my life will be a continuous series of teaching Dan how to tend to his body.

I have been reading Liturgy of the Ordinary by Tish Harrison Warren. In chapter 2 she talks about the body and says:

“We Christians believe in a God who, by becoming human, embraced human embodiment in fullness, right down to the toenails. Because of Christ’s embodiment, the ways we care for our bodies are not meaningless necessities that keep us well enough to do the real work of worship and discipleship. Instead, these small tasks of caring for our bodies, as quotidian as they are, act as an embodied confession that our Creator, who mysteriously became flesh, has made our bodies well and deserves worship in and through our very cells, muscles, tissues, and teeth.”

Truth be told, I rather look for ways that God is made evident in the museum though art, to uncover amazing “God in the gallery” moments. But God is also seeing fit to challenge me to find these awe inspiring God-moments in these daily, seemingly base, ordinary tasks of tending to my son’s body.

This is why Christianity is so appealing to me, because it posits a God that is incarnational. I like the fact that I can worship a God that came as a human body and knows exactly what it is to feel what we feel. Don’t get me wrong, I love the divine and the lofty, I get lost in the concepts and I crave intellectual stimulation and conversation. I need that in my life! But I also need to empathize , I need to feel and understand other people’s pain. Dan does this for me. He incarnates me, he makes me less snobby, more human and relatable. And when I can connect with someone over a vulnerability, that precise moment is instantaneously transformed into a divine one.

So I’ll continue to care for Dan’s body in hopes that he will eventually care for it himself. I don’t know how independent he will be but I do know that God is forming me into a caring human being through this special needs motherhood experience.

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