Sunday, May 26, 2013

Some thoughts....( I know it's late, I'm going to sleep)

What do you do to get spiritually fed? I asked myself this question, as I was laying with Leah tonight.
As a child I was always raised Catholic, and to believe that if I did good things now, then later I would get the reward of heaven. I can't say I always felt like this was true, but I followed it because it was what I was always taught, especially once I started catholic school in 4th grade. However, I was also taught by my mother that we are all part of nature and we are connected to all livings things on this earth, that we should take care of our planet, as its our home, and the home of our future generations. I always felt an affinity towards animals (neighborhood squirrels, specifically) and felt that I could communicate with them, and not in the Dr. Doolittle sense where I knew what they were thinking, but more in a intuitive way, where I  felt some sort of connection with them. And exploring nature was always a fun game that my mom would have us play, especially when we'd go on random road trips along the coast of California. I never felt the peace in church that I would feel while being around nature. Begin stuck in a room listening to things I didn't understand or care about, was always boring to me, or when I did pay attention, I always felt like God was this person who had his own set of rules and if you didn't obey, you'd be punished. I didn't like that too much, nature didn't give me that; it just allowed you to be present, in that moment with the earth, and connect to the life around you, in the trees, in the earth, in the insects. 
Moving to Peru and being immersed even deeper into Catholicism, I couldn't escape it, I had to believe those teachings and it was drilled into my mind as often as possible. God loves me, and if I follow what he has asked me to do, I will be not just a good person in this life, but in the afterlife, I will be rewarded with heaven, instead of hell. 
 I never really thought about my relationship with god until tragedy hit my life in the form of Leah's illness. At that point, all I thought about was what I could have done wrong to make god do this to me, to my child and to my family. How can someone who is supposed to love me unconditionally hurt me and my child and my husband this way? What kind of God is so cruel that they would harm an innocent 2 month old baby? And then I felt anger. Angry that a god, any god would do this to a child. Angry that my life was changing and that my hopes for this child were crushed in a matter of days, weeks and months. Even though I tried to convince myself that Leah was here for a reason, god put her here so that she could teach the world something, I was still angry that it was MY daughter who was tasked to do gods teaching. Why not someone else's child? Why my child, hadn't I suffered enough in my life? Hadn't my husband, and my mother suffered enough tragedy that this too, was now being taken away from them? I would cry so much, asking god, the force, the universe, whatever to cure my daughter and make her better, to end her pain and struggles. 
Over the past year, I've come to realize that I was wrong. God wasn't punishing me, or Leah or my husband or my family. We punish ourselves, We get hung up on what our expectations are for the future and when they don't match what we thought they would be, we get angry and frustrated and we blame ourselves and  God but we don't see the world as it is. We don't appreciate this moment in time, the gift of just today; the fact that every moment with her is a gift and it's not a curse. Every day we're changing and she's changing, she's growing; even though they told us that she wouldn't grow, she still growing. Now, when I need to find solace in my spirituality I don't feel the need to go to the temple or church or any place of worship and I only need to go to be with her.
I feel her heartbeat, her breathing, the way her skin feels against mine, the soft touch of her hair and that gives me peace. Being completely absorbed in this moment with her feeds my soul and refuels my spirit. I feel this also when I go outside and meditate in nature. Being in that environment and just reconnecting to nature and our roots as living beings, put my mind and my soul at ease. But I feel it most intensely when I lay with Leah, and sing to her or caress her hair and her face. Whenever I stretch out her muscles and move her arms and legs around, I feel like I am connected to her. 
I remember when I was pregnant and I would do yoga and meditate and I always sensed that I could feel her spirit, inside of me. When she was born being so close to her and feeling that skin to skin contact that is encouraged when babies are newborns, I felt it then as well. A calmness and serenity that just obliviated any concern or unease from my mind. I don't believe many parents have a chance to do this with their toddlers. Most toddlers are too hyper to want to snuggle with their parents, or by the time they are tired enough to do so, the parents are so exhausted they just want to sleep themselves. I'm sure there are many who can, but i don't think its very common. I feel blessed that I do, despite so many things that I can't do with her, I am lucky that I can still lay quietly and peacefully with her and feel overwhelming joy for the fact that she is alive,and that she was once me. Her whole self is a physical representation of the love that my spouse and I have for each other. And regardless of how daunting all the doctors told us her future would be, she's still here with me 27 months later. 
Many people have told me that they are in awe of that fact that I've been able to deal with all these difficulties with a smile still on my face, pretty much 24/7, but for me it's quite simple. I've stopped thinking too much about tomorrow. And because I've done this, I can enjoy myself today and in every moment I spend with her and my loved ones. I've realized that no matter what the future may bring, I don't know what it will be, I can't predict what will happen tomorrow, and more than anything, there is NOTHING I'll be able to do to stop it. I can prepare for it, mentally and emotionally, but I cannot stop it from happening; the same way I can't stop an earthquake from hitting or a volcano from erupting or a meteor from crashing into the planet and destroying us all. I can try to do as much as I can for my daughter, to try to get her the best care, and research any possible treatments, and make sure that she is comfortable and her quality of life is good. But can I stop her from passing? No, and no one will be able to when that time comes, it will happen when she's ready and she probably isn't ready yet. The same way I can't stop my mom or my spouse or myself from passing or my friends and loved ones. We'll all pass someday and fade away back into the cosmos where we came from. But I don't believe that heaven is something that we are rewarded with in the afterlife, I think our chance at finding true happiness and peace is here, during our lifetime. Finding the beauty and joy in each day, which is a gift. Sharing love, compassion, feeling empathy, and understanding others, who may be suffering from their own problems that you don't even know; this is what feeds our souls, and it makes us grow. Not just as humans but as living beings.
I know now that no one is punishing me or my daughter, but she is here to teach a lesson. But now I know that lesson  is for each person who knows her. For me, I have become a much better person, a happier person, a healthier person, a less selfish person and a much more spiritually fulfilled person because she is in my life. All she knows is love, and everyday I get to bask in all this love that we both create together, and I will enjoy each day as it comes, whether it be easy or difficult.
So, what is it that feeds your spirit? ( that's not a rhetorical question, I actually am curious) 
Good night, and peace

Ps : I just want you to know that I respect all belief systems and I encourage everyone to find spirituality in whatever religious philosophy speaks to you. Just want to make sure people aren't offended by my remarks about Catholicism, as this is just my observation, and I know everyone interprets things differently 


  1. Thank you for your transparency. My spirit is fed by my faith in Jesus Christ and the hope of spending eternity with Him. I too was raised in a mainline "denomination" ... Lutheran-Missouri Synod. I sensed the legalism as well ... follow the rules or "Whack" from the punisher in the sky. It wasn't until I dusted off a bible and was shown what God really says and His "true" nature ... which is love and forgiveness. Do I have all the answers ? ... Nah ... I don't because the older I get ... the less I actually know with the exception of my faith. I have an affinity for nature too and much of my free time is spent photographing it. Thank you for sharing and for allowing me to share :)

  2. I personally connect with many of the things that you are saying here. I believe that irregardless of who anyones god is or where they believe we are going in the after life, there is one irrefutable fact to life.

    We are here.

    We are here on this planet together. We are all in this journey of life with each other. This journey of life is an almost impossible task to handle by ones self, so we MUST work together.

    What feeds my spirit? Reaching out, connecting to, and helping the people that I am on this journey with. I've heard numerous reasons as to why we are here or where we are going, but those do not matter to me. What matters to me is the connection that we all can make to each other regardless of any of the "constraints" we as humans have built in our minds to separate us.

    I would like to help you and Leah. Please contact me.

    Jason -

  3. Plenty Gentle Comforts & Hugs to you Leah. Keep Strong Brave Baby Girl.. you help conquer this earthly world with LOVE... <3 fills spirituality.

  4. Plenty Gentle Comforts to you Leah always and many more blessings for you to come with your family. Keep Strong Brave Baby Girl .. With Lots of <3 to you Leah... You both are awesome parents Fran & Sev.. - plenty caring thoughts for you all... Keep Strong. <3

  5. Reading your journey feeds my spirit and knowing Leah is safe.

  6. As you already knows, Leah had changed my life, my way of seeing and facing life. I always wanted to help others and I didn't know how until I knew about her, about your family. Leah taught me that 'help others' is just a matter of 'start it'. My Goddaughter was diagnosed with autism more or less at the same time when I knew about Leah. These two kids changed my life forever. And since then, my spirit is feed by the help I give to others. I wake up every morning knowing that I'll make the difference in someone's life and this gives me inspiration. My spirit is also feed by my religious path, but this would be so important if I didn't met Leah.
    Thanks for sharing your own experience. And thanks for asking.
    Lot's of love.

  7. Dear Frani and Zev, though I can only help in words and thoughts, I know that sometimes, it is that which means more to a person than physical things. Knowing that someone cares enough to listen, and to give freely of their love is a powerful thing.

    May God be with you now, and give you comfort and strength. <3

  8. I'm glad for you that you came to this place a week or two ago. I hope it's helping now... I cannot imagine being in the position you've been in for the last two years, or are in now. I wish you peace and healing.

    What feeds my spirit? Music. Laughter. Art. Cooking, especially cooking and sharing, triply so if I'm making it from things my friends have grown or harvested. Nature. Messages from the gods hidden in all of those... some subtle, some not.

  9. Frani, just now reading your last post. I found out about Leah last night and was heartbroken. I've followed you all since Leah was just a few mths old, so hearing last night that she passed, well, it felt like a close family member was gone. It truly ripped my heart out. But after reading your post, the hurt is still there, but eased a bit. I always knew that Leah was an angel and felt that she had a great purpose here on Earth. I can't pretend to be smart enough to know all the reasons, but I do feel that one of her greatest gifts was the way she has brought people, all people together. That was a big job for such a little soul, but she certainly did her job fantastically well! I cannot even begin to know what you all are feeling, the pain you're in, but reading your blog on your thoughts has helped. I too was raised a Christian but I have always felt that the teachings I were taught just didn't quite have the story right. I have always been close to nature, I feel the safest, happiest when I am either among the trees or staring at them. I lost my Dad, the most wonderful being ever almost 2yrs ago. I was devastated at first, but now I feel, I know, that his spirt hasn't left, only his body. I feel him in the breeze, the ocean mist, everywhere. With a spirit as big as his, there is no way that could die. That's the way I feel about Leah, her spirit is still around you, a spirit as big as Leah's is still here. I hope that I haven't said the wrong thing or sound as looney as I actually am :) Please know that as much as we all loved Leah, we love you and Zev as well. God knew exactly what he was doing when he placed Leah with the two of you. He knew that her parents would treat her as the princess she truly was. God bless you all and know that her other family around the world is here for you. Love, Jennifer in NC

  10. Dear Ones,

    Lifting you all up to The One who can handle our questions, frustrations, anger, grief...Who is unwavering in His love for us. Understanding how much GOD does love us and learning in time that as much as we love others His love for those same people is still greater...GOD absolutely loves you all and a faith in what He has already done...not what we can do...makes possible that glorious day when we will be reunited. My dear 501st brother & sister, my family experienced a loss two years ago of a sweet little girl named Meagan - she was extended family through Church and we'd walked together through the onset of what turned out to be an incredibly rare disorder (Hashimoto's encephalopathy). Meagan's Mom, Mary, had loss her husband just six years earlier...needless to say that if it weren't for our "hope" in Heaven it would be incredibly difficult to continue on.

    Hope = ἐλπίς (elpis), a looking forward to in confident expectation

    Unlike the English word “hope,” the New Testament word contains no uncertainty; it speaks of something that is certain, but not yet realized. The believer’s ultimate destiny is to share in the very glory of God (8:29, 30; John 17:22; 2 Cor. 3:18; Phil. 3:20, 21; 1 John 3:1, 2), and that hope will be realized because Christ Himself secures it (1 Tim. 1:1). Without the clear and certain promises of the Word of God, the believer would have no basis for hope (15:4; Ps. 119:81,114; Eph. 2:12; cf. Jer. 14:8).

    The LORD impressed on me through ministering to Meagan's family that we (the Body of Christ) can't lose hope or the realization of what that hope is. It's not a "wish for, might be good if" - it is rock solid and was made so by The Rock Himself.

    We love you all and are here for you - we want to continue the brave fights that our family members have put up and continue to be there for the others that are still fighting illness & challenges --- I've learned a few things in my 43 years of sojourning through this place.

    - I do want what GOD wants
    - I believe that everything that happens in my life and that of my brothers and sisters in Christ is ultimately meant to bring glory to GOD
    - I /we weren't made for here & now...we were made for eternity

    This last point is why I believe we will on this side of Heaven always feel as though something is missing, not quite right, doesn't really work or fit.

    I presume you might be familiar with Randy Alcorn...I've been blessed by his writings especially his imagery of the dot and line. Our time on earth whether 8 years or 80 is a dot - a period on a page and from that is an infinite line - literally a line that goes on forever. As believers we have to live for the line (eternity, Heaven) not the dot.

    If you or your family need anything now or in the future please call on us.

    Geoff (SL-4315)
    a redeemed Darth Vader who costumes for a cause

  11. I'm crying my eyes out as I write this - you are both so brave and such wonderful parents. Life has struck you a terrible blow but you still find the strength to come and write here and share your thoughts. Leah was lucky to have you both and you her but that wasn't enough and you shared your story with the world every step of the way - a huge extended family. The legacy that Leah leaves is one of bringing people together from all parts of the globe no matter what colour, creed, race or religion. We were all there - donating money, talking about Leah and praying for you in our own ways. The world is a sadder place for Leah's loss but she has given us so much, as have you both and you should be very proud. She will never be forgotten and will live on in the hearts of many – including mine and my family. With much love, James Burns

  12. Me sentí muy identificada con ustedes pues viví una situación similar hace ya casi veinte años y a pesar de tener tanto apoyo a veces eso no se compara con la preocupación e incertidumbre de no saber que le depara a los pequeños, la angustia y la pena de las personas a nuestro alrededor. Sin embargo estos pequeños, son para mi verdaderos seres de luz, que nos brindan su existencia para que nosotros apreciemos y maduremos, para que crezcamos.No les doy un pésame, los felicito y espero que juntos aprendamos esta lección de vida, se que en adelante no temerán y harán las cosas de corazón. Yo no soy de muchos recursos económicos pero trato de tener siempre un pensamiento para Meztli y para todos los bebes que como ella están pasando momentos difíciles con padres de pocos recursos económicos. Ustedes son jóvenes y preparados y la motivación de haber conocido a su hija permanecerá por siempre, así sea

  13. Me sentí muy identificada con ustedes pues viví una situación similar hace ya casi veinte años y a pesar de tener tanto apoyo a veces eso no se compara con la preocupación e incertidumbre de no saber que le depara a los pequeños, la angustia y la pena de las personas a nuestro alrededor. Sin embargo estos pequeños, son para mi verdaderos seres de luz, que nos brindan su existencia para que nosotros apreciemos y maduremos, para que crezcamos.No les doy un pésame, los felicito y espero que juntos aprendamos esta lección de vida, se que en adelante no temerán y harán las cosas de corazón. Yo no soy de muchos recursos económicos pero trato de tener siempre un pensamiento para Meztli y para todos los bebes que como ella están pasando momentos difíciles con padres de pocos recursos económicos.