If you can’t Find a Solution, Change the Rules

CHANGE THE RULES

My Dan has sleep issues. It has gotten better, but he still occasionally wakes at 3 AM craving food, sensory play or just wanting to be next to me.

At one point in time I was EXTREMELY sleep deprived. Not just one night, not a couple of months, but two years worth or more of sleep deprivation. I am never going to get those years back and my wrinkled, saggy eyes are paying big time for it. So, at that time,  I got to do things that might seem unconventional to some. Let me explain…

It was hard to find a solution to Daniel’s sleep issues. He didn’t respond to anything for a long time. Young mothers are always taught this rule: when the baby sleeps, you sleep. However, when Dan’s waking hours consumed me, his sleeping hours had to feed my soul. I was/am an artist mom and I need to create! So what this meant for me was that while he napped, I wrote, sewed, or screen-printed. This got hard to sustain long term, though, and I eventually crashed with him during his nap, but you know what I mean. I had to change the sleeping rule to fit who I was.

Same thing happened with his birthday a couple years ago. Dan had been waking up everyday two weeks prior to his birthday that year. I had previously told the teacher that I would come and celebrate in the classroom like I have been doing years past. The night before his birthday, Daniel finally gave me a full nights sleep. It was his birthday but I got the gift! It was the first time that I had felt alert and ready to work on my blog, my website, my sewing projects. I was still planning on going to the classroom but with much hesitation. I didn’t want to give up this valuable time! I felt I was giving up my day of productivity to go into the classroom for 45 minutes all because it is something I do every single year. The teacher ended up e-mailing me and said that she was not going in that day because she did not feel well. This gave me permission to call out too! So I called the school and told them I wasn’t going to celebrate Dan’s birthday in school, but at home instead. I did feel guilty and thought “how horrible everyone will think that I am for not bringing in a cake to school.” I went on beating myself up when I thought; what people don’t see is that I have been patiently up with my child for two weeks straight, loving him, singing to him, rocking him, hugging him, hoping that any minute now, he will dose off to lala land. During this time I did not beat him nor yell at him. God sees that, I see that, my family sees that. I deserve a productive day to myself where I am alert and ready to work. This has to be enough for a rule change.

So sometimes there are rules that simply do not apply to you and who you are. Now, I don’t mean rules concerning moral behavior or that you are exempt from the law. By all means, follow those rules! But sometimes the rules typically given to moms (of neuro-typical or special-needs children alike) do not make sense to your particular situation.

This is a lesson I continue to learn.

*Much of this post was written six years ago and modified recently.

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People Need to See You without the Kids

WITHOUT THE KIDS CANVA

Believe me, I know how hard it is to go anywhere without the kids! You don’t have to tell me how difficult it is to find babysitting for two special needs children. But people need to see you without your kids once in a while. You will forever be the poster child for autism if you don’t.

One place that we regularly go to as a family is church. During the service, Dan crawls all over me as I try to prevent Micah’s tantrums. By the time I get home, the day is a blur; I don’t know what the pastor preached about and could not have one conversation after the service, if anyone dared come near me at all.

If anyone does approach me at church it’s usually to tell me about a movie they saw about autism, or that they have a friend whose son/daughter just got diagnosed and ask whether I have any advice for them. Then there are the times when well-meaning parishioners gain a wee bit of knowledge about autism and begin to dole out chunks of advice, book recommendations, and places I should go to help the kids. I used to blame them but then it hit me; why wouldn’t they talk to me about autism? It’s all they see when they see me dealing with my kids and their antics! I had inadvertently become a walking poster mom for the cause with my kids in tow.

If people see you all the time with your kids as they act up and crawl all over you, that is the image they have of you and that is all they will see, and most likely, all they will talk to you about. They can’t see the full view of who you are with the kids in the way!

I realized that this needed to change and told my hubby I had to go to church at least twice a month without the kids. It worked. At first glance, people asked me where the kids were but after that was taken care of, they commented on how great I looked in my outfit, how good my hair looked, inquired about my fashion business, aspects of my life that were not kid related. It was amazing. People saw ME for the first time in a long time. You need that and people need that. People WANT to see you.

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* This was written five years ago but I felt it was valid to leave as is and not update. Since then, we have moved to a new church where, after facing chalIenges, we have found a way to attend church, consistently, as a family.

Find your own Mothering Style

MOTHERING STYLE CANVA

Mother can’t you see I’ve got to live my life the way I feel is right for me. Might not be right for you, but it’s right for me                   

 -Sarah Mclachlan, Elsewhere

Mothering style. When I first encountered this term, I thought it was weird. What is a mothering style? I thought. You simply have a child and you mother it. For me, that just meant following my mother’s mothering style. It’s all I knew and it seemed great to me.

I grew up with a father who was an alcoholic. I don’t always like saying that out loud and less so in print. Just as I don’t want to be the poster child for autism, I also know that this was not all my father was, an alcoholic. He was a man of great passion and creativity; a poet, actor, and a lover of books. He also had a great interest in real estate and business. Now that I think of it, I am very much like him. Nevertheless, he had a drinking problem and it brought great unrest and instability to our home immensely affecting my sisters and I while we were growing up.

My mom, like my father, was born in Puerto Rico. She came to the U.S. when she was nineteen for what was supposed to be a summer vacation. My mom met my father, who arrived earlier, fell in love, and never went back. The story is quite dramatic, involving my grandfather hauling my mom back to Puerto Rico and then my father going after her, pleading for her hand in marriage. I am not sure how much of this is true but it is quite romantic and I love the fact that there was so much passion between them.

My mother was the total opposite of my father. Where my father liked to go out, network and socialize, my mom was a homebody. She enjoyed decorating, cooking, and beautifying the home any way she could. She sewed curtains, bed cushions, appliqued on towels, and eventually steered all of this creativity towards my sisters and I by making us amazing dresses. My mom had many friends but she did not go out with them, she solely entertained at home. She liked the privacy that New York, particularly the Bronx offered, where you lived behind locked doors, in apartment buildings, everyone in their own file cabinet of a box. She often complained about her home in Puerto Rico where there was no privacy with open door policies, and anyone walking in whenever they wanted, whether they were related or not.

In actuality, I am very grateful to my mom for this. My mom’s love of the home, provided a balance to the chaos that arose when my father would come home drunk, break dishes, curse at her and us, and leave in a huff, sometimes for days.

But like many parents born outside of the United States and raising their children in what they thought was a foreign land, my mom’s mothering style was infused with fear. My two sisters and myself were absolutely sheltered and not allowed to do much that did not involve being in front of the house where my mother could watch us. The freedom that we did have came from being part of a church community and being allowed to go on trips with the youth.

This was okay when we were little girls but as we got older, my sisters and I often struggled for a morsel of freedom. We would joke that my mother’s act of rebellion, coming to the United States at nineteen and then staying for a boy, was more dramatic than anything else we ever fought for: wanting the right to go to school in Manhattan, wanting to date at 16 (that battle we lost quickly), or spending a semester abroad.

When I had children, I naturally tried to emulate my mom’s example. It was the only mothering style I knew. With my first born, I had various freelance jobs so I still had a semblance of a working life but with Dan, and his challenges, this was not possible. I needed to be home. I thought it would be easy because I saw my mom do it and she was so happy. But it wasn’t at all for me. I like to go out, I like to socialize, people energize me! This had not changed because I had children. My husband had (still does) a hectic job and was often not available to watch the children so that I could plan time with friends, and it was difficult to find a babysitter who understood Dan’s needs. I was lonely, miserable, and sad. I would question myself and always had mother guilt because I had this need to go hang out with friends. Why couldn’t I be content like my mom? My mom sacrificed so much for us and I was falling short. What was wrong with me? Should I have ever had kids?

I finally had to come to terms with the fact that my mom’s mothering style was not my own. Yes, my mom is an amazing woman, and she continues to be my role model in many respects. She is a great example to me of courage and resilience. She came to the Bronx at 19 years old, by herself, to live with a family friend from her hometown. This was indeed a great act of rebellion and liberation that allowed her to live the life she desired, here in the States. I don’t know if I could have done that. She put up with my father’s alcoholism, finally breaking free by leaving him. We had to live with family and friends for a while but we finally settled down and began to heal. My mom’s fierceness is what I tapped into when I finally made the decision to honor who I was as a mother. I recognized that, although we had different stories, we possessed the same tenacity and persistence.

That doesn’t mean that there are no sacrifices to be made when you become a mother. These sacrifices, however, are different for each of us. I didn’t have to sacrifice my gregarious self because I have two special needs kids. Now the work began as to how I could honor the social person I was while still being fully present for my children. It’s more complicated when you have special needs children but complicated is not impossible. I finally applied for respite services and got help. I also joined a support group that allowed me access to an array of special needs parents; fearless, warrior moms and dads who also held me accountable in this self care journey.

What is your mothering style? How can you begin to tap into what makes you you, regardless of having kids or not. How can you find a mothering style that honors who you are as a person? How can you honor yourself by creating a mothering style that serves you?

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Have the Conversation with the Right Person

CONVO WITH THE RIGHT PERSON

There have been times when, in my moments of darkness, I have shared my raw, honest feelings about mothering special needs children and they have come back to bite me in the ass. I had the conversation with the wrong person.

The person in question manifests that they are indeed the wrong person when he/she responds with a blank stare, waves away your feelings and tells you not to feel that way, or blatantly judges you. Unfortunately, sometimes the wrong person is rather close to you; your significant other, your mom, and yes, other special needs parents. That is probably why you chose them, because they were literally close by and you needed to talk to someone, anyone.

You have to find people that can handle your honesty. I remember being in church and people telling me; “wow, you are so patient, so good with your kids”, “you’re a saint.” If they only knew how I sometimes felt inside, that I sometimes questioned my decision to have children, that I sometimes felt I caved into pressure to have a second child when I was totally content with one, that I often wondered if I should have had children at all.

I have wondered what my life would have been like without kids, or without Dan. These are real, raw, honest feelings that need to be voiced. When you have these feelings, you are in the moment. Your feelings aren’t you, you are reacting to a situation and you say the weirdest things. You need people around you that can ride you through these moments and see you to the other side.

I thank God for my sisters. We are at a point in our lives where I can tell them anything and know that I will get nothing but love in return.

But if you don’t have biological sisters you can talk to, there are sisters out there that can handle your honesty. I promise you! Keep looking until you find them.

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Forget Who you Were on this Special Needs Journey

FORGET WHO YOU YOU WERE - IMAGE

I know, I know, I just told you (in the previous post)  to remember who you were but there is definitely a balance to be had. Remembering who I was really helped me to connect to interests, parts of me, that I erroneously thought needed to be automatically sacrificed to make a life with my husband and children; art, music, going out with friends, these did not need to be sacrificed. However, other aspects of my life needed to change in order to make way for a new reality with my kids.

Before kids, I was on a fast track to becoming the next Latin American curator (at least in my head). I graduated with a BA in art history and Latin American studies and landed in the best spot I could be, El Museo del Barrio, the only Latin American museum in New York City. I was already an intern there and when I graduated, I was quickly hired. I subsequently worked in an art college, various other museums, and became an art teacher in a public middle school. All of this to say, that I had amassed a vast art book collection ranging in subjects such as art history, art education, and art making. I also accumulated art journals and various catalogue raissones.

When I decided to take my sewing business seriously, I opened a shop on Etsy.com and rapidly began building my fashion, craft and sewing book collection. At the same time, book collections belonging to my husband and sons were also rapidly growing. Our small two-bedroom Bronx apartment could hardly contain all the bookshelves, toys, and special equipment that filled our house. My home was becoming cluttered, overcrowded, and disorganized. There were times that I just didn’t want to be in the house because it was so overwhelming with the piles of stuff we had all around; the art books, the piles of unread New York Times, fashion magazines, art supplies, etc. Dan, who has impulse control issues, would knock down the piles, crumble papers, and break books, and I would constantly, over and over again, pick these items back up, try to fix them, and move them elsewhere. Then it dawned on me. These items no longer spoke to who I have become and the point that I am in my life right now. Dan was giving me a sure fire sign, in his non-verbalness, to get the hell rid of all this stuff cluttering the home that has nothing to do with the mother I am, the mother I have become.

It was a big wake up call and I decided to make the very difficult decision to sell part of my art book collection. As I prepared the list, I cried. Perhaps, I was mourning my life pre-kids, pre-autism, pre special-needs, pre-tantrums, when I could lay around and read art history books at will without fear of them being destroyed. I tearfully typed each title of the book knowing that it was the best thing to do for our family. Maybe if I had a bigger home, it would not have been an issue, but for us, in our tiny Bronx apartment, it was the right thing to do for our kids. They needed space. We shouldn’t clutter the house with our dreams deferred when there are new dreams to be made, new memories to store. I found comfort in knowing that there was another door opening for me, only me. This de-cluttering wasn’t only about the kids. I was embarking on an exciting journey starting Nelesc Designs (now Nelarte), a screen printed/ reconstructed clothing line of unique garments.

I didn’t sell all my books, though. I kept some of my favorite art books, some slides, and my old-fashioned slide projector. Occasionally, I gave my oldest a mini art history lesson, or worked on a craft project with him. Although I wasn’t practicing at that time, art history was very much a part of my life and I still cracked a book open for enjoyment once in while.

*I am glad I didn’t sell all my art books because seven years later, I returned to my museum practice and am once again building my art history book collection in a bigger home.

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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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Artist Lessons Billy Joel Taught Me

 

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Happy New Year!

I took my son to see Billy Joel courtesy of my husband’s amazing Christmas present to us. It was MAGICAL and a testament to to the timelessness of good art which is the music of Billy Joel. I saw people  (and I am guessing here, but I think it’s pretty accurate)  from about 4 years old to 80, all bopping, dancing, what’s the current word for grooving? to songs (really stories) by this Piano Man. It was an unforgettable night!

In addition to the joy I felt sharing this moment with my son, I also learned artist lessons from this concert experience that I would like to share with you.

1. Billy Joel creates art that is timeless.

Billy Joel’s songs are about humanity. They are stories about everyday life. Allison Vesterfelt says about writers (although it can be applied to all artists) that “what often sets timeless writers apart from those who quickly fade into oblivion is their ability to use writing as a vehicle to bare their own humanity. That’s the kind of writing  we connect to and cling to. The kind the ultimately stands the test of time. ” It’s this kind of timelessness that allows Micah, in his adolescence, to identify with songs like My Life and Moving Out  ( although he better not talk to me with that fresh mouth) songs that as a woman I continue to love (Always a Woman, Just the Way You Are) songs that remind me of my husband  and his craziness (You May be Right). Billy Joel sings about stuff we say all the time only in rhyme and accompanied by music.

He knows this and continues to sing the same timeless songs from 20 and 30  years ago to a fresh new audience, and he’s making a fortune! So yes, make art that is timeless and part two of this lesson is, don’t underestimate your content written one or 20 years ago. There are still people who have never heard nor read anything you have created. There is a new generation you can market to with your timeless content!

2. He gives the people what they want while remaining true to himself.

At a certain point in the concert, he said. “this next song, was not a hit, it was actually on the other side of the 45 with We Didn’t Start the Fire…” I was like, “who wants to hear that?! Gimme the fire song!!!” But he clearly wanted to perform this other song, this song  the world knew nothing about, but obviously meant something to him.

Was it the song everyone when to the bathroom on, got food, or checked their phone messages? YES. But this taught me that all you do as an artist will not be a hit, not all of your “songs” will command everyone to their feet. But these “songs are still part of you,  you created them, and they get to be performed. You can give the people what they want but you can also be true to yourself and create and perform/make what you feel strongly about, even if it’s not popular.

3. He offers the spotlight to others

At another point in the concert we noticed someone else singing a solo. Who was this guy that was not Billy Joel? I thought. It was Mike DelGuidice and he performed the opera classic, Nessun Dorma . He had played 15 years as a Billy Joel cover artist and later invited by Joel to join his band  in 2013.

DelGuidice was awesome. His voice velvet yet strong as he belted out this song. I know who he is now because Joel shed some light on him and introduced him to his audience of over 18,000 people. I say this all the time, true artists don’t compete, they collaborate and share the spotlight.

4. He creates an urgency with his limitations.

Joel  plays one or two sold out shows a month. With the amount of energy I witnessed this man exert at 69 years old, he could probably do more but he doesn’t have to. And he probably doesn’t want to. He knows his limits and because of this he creates an urgency.

It worked with us. When I was on the fence about shelling out the money for the concert,  my husband said, “we better get the tickets this year, we don’t know how much longer he is going to perform.”

Sometimes our limitations as creators create an urgency and people who are on the fence about buying our products are forced to make a decision. I have seen this happen with my own work for sale. As a mom, I was very transparent about times I wouldn’t be making or shipping products because of  the boys’ school schedules.  It motivated people to buy when I could ship. Allow you limitations to create an urgency.

5. He is ultimately  about artist community.

During the concert, Joel covered the Eagles’ song, Take it Easy. Micah was shocked! He was like “Mommy, this is not a Billy Joel song, this is an Eagles song! Why is he singing this?” I was surprised too but had a realization.

Take It Easy is a song written by Jackson Browne and Glenn Frey, and recorded by the Eagles with Frey singing lead vocals. It was the band’s first single and the opening track on the band’s debut album. It also became one of the Eagles’ signature songs, included on all of their live and compilation albums and listed as one of The Rock and Roll Hall of Fame’s 500 Songs that Shaped Rock and Roll.

Why would Billy Joel sing a song intrinsically tied to another artist? It’s because of artist community! He recognized genius and artistry in others even when the spotlight was on him.

Thank you Billy Joel!

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billy joel spotlight

“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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How Mark Rothko Made it all Better at the Psychologist’s Office

Rothko and Dan

Dan and Mark Rothko’s Untitled (Yellow and Blue), 1954

Dan had a psychological evaluation the other day.

I used to leave these feeling defeated, concentrating on everything he couldn’t do, milestones he should have met years ago, still un-met. But I didn’t feel that way today. I know what he can do, I know what I can continue doing, and I know what God has done and will do. And when I have this “can do ” attitude, my emotions are protected, my spirit remains intact, I am held together.

I don’t think it was a coincidence that Dan ran,and sat underneath this Mark Rothko reproduction as we arrived in the psychologist’s office. I have learned to really appreciate his work in recent years, his paintings held together by color and light. He says about his own work, “the people who weep before my paintings are having the same religious experience as when I painted them.” Upon seeing this work, I didn’t cry but I felt a calm presence. Rothko also says that he “paints the finite and the infinite.” Where my finite, futile efforts end, God’s infinite power, in Dan’s life,  continues.

 

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