How It Feels to Be A Sibling to Lillian

**THROWBACK POST**

February 19 2013:

One of our sweet Chromosome 18 friends is doing a research project on Chromosome 18 affected individuals and their family for school and asked us to participate.

Here’s Thomas‘ contribution … being interviewed regarding how it feels to be a sibling to Lillian! Go Courtney MacMasters¬†Go! Courtney is sibling to one of our C18 affected friends!

BE the Change and Know Who You Are

November 9 2016:

I wrote this message after taking these pictures. We just got back from Lillian’s OT appointment and I was drawn to these two trees. Lillian and I laughed, and smiled, and took wonderful, inspiring pictures. A message inspired by nature …

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This afternoon from 1-3:45 I get to speak on a parent panel at UNR to students in the medical field. The class is titled Serving Individuals with Disabilities and their Families.

I may falter at times, yet I will continue to do this. I will continue to live from my heart. I will continue to meet anything that is the opposite of love with love and peace. I will continue to spread love, compassion, and non-judgment as that’s the only way I know how to BE anymore.

Even when I encounter others who have everything but kindness to share with me, I will leave my ego and mind and be in my heart. I will see past that person’s ego and see who they truly are. I will not argue. I will not go there.

I have two kids who watch how I react and how I show up in the world. I know that my words are meaningless without the living of those words by myself.

In the “Peace Lesson” I gave on Monday to a group of 4th-6th grade students, the first question I asked them after we defined peace was this: “Where do you think we find peace?” … Only two students offered to answer. One said, “In a sanctuary”. I agreed with him that a sanctuary could certainly be a peaceful place. The other. The other. She knew. Her answer … “In our heart.” That wonderful girl read my heart …

Peace does not begin with “the other”. “BE the change we wish to see in this world” is not an empty meaningless quote for me. BEing the change does not start only after another person changes. We cannot force others to be peaceful.

One other suggestion I shared with the kids: When someone wraps a beautiful package and offers to give it to you as a gift, and you decline to accept that gift; who is the owner of that gift? The gift remains with the person who tried to give it to you.

What if you considered unkind comments from others as a gift they were attempting to give you? And you decided not to accept that gift? The gift would remain with that person. I have taught Thomas and Lillian to respond to unkind comments with silence, or “Is that so?”, or “Okay” and to walk away. It truly, truly does not matter if that person thinks they are right. What matters is what you know in your heart and how you live and BE.

I gave an example from my own life. A couple of years ago, I was sitting next to someone who had been an everyday part of my life for ten years, someone I trusted and loved. That person chose to say over and over many unkind comments to me.

I finally turned to the person and said, “You know what? You are right about that. And you know what else? I have nothing but love to share with others and I will not argue. And, I am so deeply sorry that you feel so unloved.”

Obviously, I didn’t and don’t agree that this person was right. I simply let him relax into the feeling that his ego so desperately needed. After that the “conversation” ended.

I do not mean to say that we ignore when we feel worry, anxiety, and fear. Absolutely NOT. FEEL those feelings, physically feel them. This does mean to dwell on the reason for the feelings. That will not have the desired affect. Focus on how it physically feels. Sit with them. No matter how painful. Cry a river of tears if that’s needed.

For when we let ourselves physically feel these emotions, we then, and only then, will release them. Go stand barefoot in the grass, dirt, sand, or rocks and let Nature help you with this. It is truly magical. Oceans of love and hugs to everyone … xoxoxo

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Wednesday, November 9, 2016, was so incredibly strange as I was going through an internal shift all day and it was simply overflowed into my presentation

In the past I would have been bothered for at least 2 weeks by the way I presented myself. I feel it’s time to retire the facade and BE who we are … vulnerable, real people whose only true want is love, joy, and kindness … And it’s only a “want” because we haven’t realized we already have all that within us … Love you! xoxo

This afternoon from 1-3:45 I spoke on a parent panel at UNR (with 6 other Moms) to students getting a degree serving individuals with disabilities in one capacity or another. The class is titled Serving Individuals with Disabilities and their Families.

It was not my best “speaking”. My voice wavered, I was on the verge of tears, and wept at times. I’ve spoken so many times over the years about this topic and not presented in the same way as today. I’m usually firm and confident. Yet, I do not judge myself thinking I have done poorly. I was authentic.

When these students graduate, get their first job, and they have a parent(s) sitting across from them, there will be days when that parent will not be their best. They may be experiencing illness in the family, a marriage that’s crumbling, had a negative experience in the grocery store before the meeting, or experienced something world shifting that has caused them to know who they truly are at a deeper level.

Today I was authentic in a huge room full of people I do not know. On the drive home I cried so hard and deep I could hardly get my breath. A strange mixture of tears of sadness and joy all at the same time. Knowing a chasm had just opened in my heart to an even deeper level to let love flow in and out. A chasm of connection with all.

May we all let ourselves know who we truly are .. not what the mind or ego would have us believe. What we truly are ….. LOVE …. xoxo

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On the drive home I had an experience unlike anything I’ve ever experienced before. A true shift. A deepening of knowing. My heart was opened. Opened for more love to flow in and more love, compassion, and empathy to flow out.

I was crying hysterically and singing at the top of my lungs to this ….https://www.youtube.com/watch?v=Da69-pu_pqc ….. and then a Stevie Nicks song. Since then everything seems so clear and pure. When I listen to songs, I’m hearing them like I’ve never heard them before. I’m singing and dancing and the love is overflowing within me.

I realized that I have an opportunity here. A golden opportunity to confront shadows still lurking within and have this be the catalyst to walk the talk and BE LOVE, to do what I came here to do .. And that is to share love in my own unique way ….

It was beautiful and authentic. Good thing the hysterical enlightenment and awakening waited until I was in the car and didn’t happen in front of those students. They only got a little taste of it!

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