I belong to a group called “micro preemie moms.” It's one of my titles 😊.
Sarina is a micro preemie.
A micro baby is a baby born before 26 weeks gestation.
Sarina was born at 24 weeks.
Today a mother in the group asked to send the last picture of being pregnant with our micro baby.
I have this pic in my favorites. Sarina often asks to see it. It was
I know to the second what I felt and thought and of course where I was taken eight days before Sarian was born. On my second anniversary.
🌕 Full of WELTVERTRAUEN, a perfect German word for trust and confidence into the universe.
It took me many years to gain the last one back.
Because I am the mother of this extraordinary young woman called Sarina and an advocate for living a mindful life I cannot let this sit here without answering this questions:
💎 How did I do it?
Which brings forward the question:
💎 Do you know who my most significant teacher was?
💎 Who was picking me up each time I crushed?
My soul's companion and best friend is called Yoga.
💡 Yoga taught me that the obstacles on our path are the path.
Boy does that hit home when I fight against yet another obstacle I have to overcome.
Everything I need I learn on and off my mat by seeking an authentic life with huge pockets of joy and adventure and silence and acceptance embedded within.
It’s written in the Yamas and Niyamas, my Yoga friends you know what they are. And for you my friends who don’t, they are the ten guidelines every Yoga practice should be built upon. Well, every life should:
⭐️The five Yamas teach us:
How to behave in the world. Nonviolence. Truthfulness. Nonstealing. Moderation. Nonpossessiveness.
⭐️The five Niyamas teach us:
How to act with ourselves. Purity. Contentment. Self-discipline. Self-Study. Surrender.
They are my mirror at night when I reflect on how well I have participated in my life no matter how stuck I felt.
🙏🏼I bow my head to this one.
Today my micro preemie is 27 years + a few months old.
No matter how challenging it is at times, I take action every day and choose to be:
🌕 Full of WELTVERTRAUEN, a perfect German word for trust and confidence into the universe.
This week marks the end of Sarina's first semester at Santa Rosa Junior College! She is in her finals. Today is the last day of tests. She will do a verbal presentation of her portfolio. She spent hours and hours polishing it to make it shine. And sleepless nights worrying it might still not be good enough.
Last night she presented it to us. No, not on the fly. That's not a quality Sarina owns. Everything takes a tremendous amount of time.
I am with her on every leg of this ride. My husband and I are both, of course, rooting for her.
She did a fantastic job! She managed college life to the dot. It's her world. It's genuinely her dream come true.
Having Sarina move back home was the only way she could do what she loves: to learn about the world and to use her knowledge to advocate for others.
We had to face incredible hard circumstances as a family. I had to give up my empty nest. I had to put my dream on hold. Our family of three turned my married life upside down. Sarina is exhausting.
She is not your typical young adult. She needs support in all corners of life. I often feel like I am supporting ten people at once. All ten in the body of one person.
⭐️ a young child I need to hold space for so she is safe.
⭐️ a teenager that pushes boundaries and fights her limitations
⭐️ a bright young adult living up to her dream by going to college, deserving every inch of support I can master.
Add a good dose of:
Auditory and Visual Processing delays
Executive Function issues
and the conviction that she can do it all alone
and you might get a glimpse into the struggles we have.
Not to forget the incredibly charismatic and soul aligned young women she is. She moves hearts. She offers to help every step she takes. She adds love to the world.
Almost all human emotions are showing up on a daily basis. The harder ones are when Sarina is not living up to a skill she already owns. When she has mastered her schedule for three days, but it might fall apart on the fourth. When I have started to trust, but things fall apart again. That's when I get undone. That's when my humanness becomes real. I have been into this for 27 years.
I bite the hook when this happens. I lose it. I crush.
And then I stand up again and remember what I know is the only way to be and survive. I practice:
To breathe! To not bite the hook which takes a tremendous amount of learning and self-reflection. But it is possible. My work brings this skill to my life and the world. And then, I forgive myself. I move on and fail better next time.
On a daily basis.
It's a full life.
But, it wouldn't be full if I forget one more important thing to add. It's a skill that stands for healthy parenting besides all the support and unconditional love we share.
Mothers of special needs children more so then others need to look deeply within themselves to discover what they are burning for. "Who are you besides being the mother of this child?" is a question we must ask.
I am on that journey with you. I know how difficult it is. I see the sacrifices. Over the 27 years, I have supported my daughter I have learned to ask again and again: "What is my mission besides raising this extraordinary child? What do I want to bring into the world?"
I show Sarina what it means to be a mother. The bright side as well as the dark moments. And at the same time, I let her witness how I built my dream.
By doing so, she learns to understand where she ends and I begin. I show her the passion I have for my work. She knows me on the yoga mat as much as she knows me in the kitchen. I let her be part of the calling I feel to share the tools I gather from my life with other parents who are in a similar boat.
And most of all she witnesses me get ready, not giving up while still being the wholehearted parent I am. We just need a little more time. We will master that next step. She will have her nest while I will be the proud owner of:
MY EMPTY NEST.
We are both waiting for the very moment Sarina gets a chance to move on. We as a family deserve this. And if you are in our boat, you do too!
A note about us:
If you don't know us personally or have not met Sarina but you live with circumstances like ours, this is my way of telling you how I choose to be. This journey of raising a child with particular challenges might take longer, is harder, is heartbreakingly challenging and often soul-crushing sad. And yet it is profoundly gratifying and 100% worth it if you celebrate the little steps and keep holding your dream in front of your eyes. You must realize your own worth apart from your child.
All things I have put on hold are still there. I am grooming and cherishing them. Also, for now, my daughter comes first.
Don't let anyone tell you different. Don't let anyone compare your very special job with theirs unless they are doing what you do.
I struggle. I leap. I fail. I succeed.
I can help you do the same.
Drop me a note below or send me an email or sign up for my newsletter. I'd love to be in touch with you!
DEAR FRIENDS OF SARINA, I WROTE THIS LETTER TODAY BECAUSE MY HOPES NEEDED A VOICE.
I know you know this young woman. She is your daughter as much as she is mine.
I have some questions for you.
"Can you hear me? This week I feel I am using the wrong frequency to get in touch with you."
"Of course I hear you. I see you right now looking out of the window marveling at the beauty of the land."
"Oh, great. You know I see everything. I hug my trees. I, not for ones have I driven by Adam without saluting to him. I am on my mat most mornings. And if I'm not it's because I am journaling. I seek support from my angel deck. I honor my crystals, carrying one in my bra right now. Nature is my sanctuary. But, don't distract me with that now."
"Oh, wow... slow down. What's burning?"
"See, that's precisely it. I have asked you as nicely as I could to empty my nest. What did I overlook to make this happen?"
"Everything takes time."
"You hit the spot. Listen, I am fed up. I am suffocating. And so is my daughter. I bargained for six months to have her move back home. Knowing darn well what sacrifices that will bring. I did it wholeheartedly. You know that. I put my dream on hold. So I can help her create hers. That's my job. No regrets. She is living up it. Even in the mids of our city being on fire, she studied her books. Thank you. But... just to update you - it has been 9 months and 7 days today."
"Breathe. Mschen breathe."
"Ha, you're doing it again. You are giving me advice like the rest of the world. I hate you."
"ups, no I don't hate you, sorry. But from my point of view, you're not stepping up to the plate. You are leaving me hanging. Mulberry did not get licensed. In case you were too busy to pay attention. I moved Sarina's belongings yesterday. Said goodbye to the beautiful place she should be living in by now. I did let it go."
"Sorry, that's not good enough. I keep my to-do list in the dust. I will be out hugging Adam as soon as I push send. I breathe. I pray. I ask for help. What else do I need to do?"
"I hear you."
"Why are you not answering? All I need is a phone call from that one place within our reach that has an opening for her. What's so damn hard for you to arrange this for us? Sarina is ready. We are."
"Your promise for my empty nest is three months late. Every day is a challenge. I master it most days, and I blow up on others. I am rooting for you."
"Yes. I'll put my foot down for you now. "
"O.k. I trust. I surrender. Let that phone ring."
"I count on you."
"T O D A Y!"
Brave warrior heart - Chain breaker - Unfuckwithable*
"I want to know what you ache for, and if you dare to dream of your heart's longing."
Oriah Mountain Dreamer
* as mentioned by Vishen Lakhiani
December 6th is St. Nikolaus Tag in Germany.
...and a day my husband and I will remember forever.
I have two reasons to celebrate today.
The first reason is the celebrating of this tradition. Traditions give me guidance in how to support Sarina in her quest to connect with her roots.
Like never before, this year and these last few weeks especially I feel an almost urgent drive to go on the treasure hunt of my past. It's an exciting feeling like I am going on a journey that has been sitting on my bucket list forever. A gentle voice is knocking itself into my consciousness every morning saying: "remember this? Go write it down!"
It's the stories we share with each other that help us to get to know ourselves better. We laugh and cry and argue and heal almost all at the same time. All while hearing someones story.
I have the best time ever when I can share my stories with Sarina. Last night she came to my bedroom: "Mschen can you read Oma Aloisias story again to me?" Of course. I shared it on my FB page yesterday because it was Oma's 140 Birthday! Well after I pushed publish my older sister reminded me to do the math again. Mhhh, she would have been 130☺️.
I did read the story to her and ended up with a heated discussion of why Oma did not understand that a woman's right to speak her truth is a human right. "Did she die believing that we women should not raise our voice?" Unfortunately, I had to say: "yes she did. You have to understand her in the context of the time she lived." A too big of a concept for Sarina at midnight.
🎅🏼 TODAY is Nikolaustag in Germany and the German-speaking part of Europe.
It was a big day for me as a child.
Our Santa Claus does not come through the chimney on Christmas Day. His prime time in Germany is today. Christmas is the day for the Christkindl in my tradition. It secretly shows up and drops the gifts under the tree on Christmas Eve.
Nikolaustag was holding the hope for praise and small gifts from St. Nikolaus but also the fear of being called out by his nasty companion Knecht Rupprecht. He is some lousy and fearsome character, intimidating to a small child. Dressed in a dark robe with a hood covering most of his face he scared the shit out of us.
I checked with Wikipedia, and his role supposedly survived the Middle Ages. A period that saw parents employing fear as a means of scaring kids into good behavior. He would secretly arrive at the homes of children and ask parents about their kids performance. Depending on the response he would give switches to the ones that needed it. I am a witness of this; it was very scary to watch.
The opposite character graced St. Nikolaus. He was sweet, looked like a beautiful Santa Claus, kind and forgiving. He handed small gifts to the "good" children.
I mostly lucked out; I remember being mentioned ones. Knecht Rupprecht told me to start listening better to my parents. But - he didn't spank me. I was surprised because they put me in time out most of the time. At least that's how it felt to me. But I remember my brother crying when Knecht Rupprecht called him out. He did get spanked.
As I sit here, I am amazed how my body is holding this memory of not being good enough in his bones. We spend a lifetime to get rid of the punishments we should never have received in the first place.
In later years and up until today we put our freshly polished boots, let's highlight "freshly polished boots" outside the front door. Dirty boots have no chance! When the sky turns dark, it will get quiet in the homes. A loud knock will announce a surprise.
I already run an argument with Sarina today. Her boots are not in a shiny shape, and when I pointed it out, I got to hear: "Mschen, you are so old-fashioned. Nobody is polishing their shoes anymore." But she does look forward to tonight!
If the shoes shine and stand outside, we find nuts and small sweets and treats inside of them.
As I type this, it's starting to get dark outside. I have a few moments left to finish here.
A different memory is 27 years old! December 6, 1990
I remember it like yesterday. A grey and snowy day in Cincinnati, OH. I was driving home from the grocery store at 3:30 pm. I remember what car I drove and which street I was on. Pam called me: "All is well, but come to the hospital fast." Pam was Sarina's primary nurse in the NICU. (Hello Pam, we still love you!)
Sarina was almost four months old when she finally extubated herself and was able to breathe on her own. And that on St. Nikolas Day! I was harboring this tremendous hope that she would be home for Christmas. Getting rid of the respirator was the first necessary step! It did not work out that way. She didn't come home until February of 1991.
She had tried three times before to pull the nasal cannula out but never made it. Her lungs would not support her desperate wish to get rid of that scratching thing in her nose. Right there in these months when she fought for her life she showed that "I can do it and I can do it alone" attitude, which makes her the extraordinary young woman she is.
The "I can do it alone," is killing me on a daily basis while at the same time makes me extremely happy. None of what Sarina has accomplished would ever happen without this strong will to survive. Today it puts her in the position to keep reaching for her dreams. She is a fighter.
I know I need to be her parachute for a little longer so she can fly!
When I look at this picture, I not only see this moment come alive. I feel the same soul touching excitement and tremendous hope I felt that day. "My daughter will survive!"
Let me dry up my happy tears now and help to fill those boots and
Happy Nikolaus Day!
Love always, Manuela
all ducks in a row...
CREATING A DREAM - SARINA, Five WEEKS INTO COLLEGE
Am I surprised? Yes.
Sarina’s challenges are exhausting and like herself, they don’t fit into a box. Not one diagnosis can describe her. Her strengths and challenges are way of the grid. What is a strength in one person on the autism spectrum can be a weakness for the other. And so on.
Seeing Sarina move through her day, engaging in a conversation with her you might wonder who that special person is.
Living with her and supporting her to move through her day is like the elephant on the tightrope. It’s often a struggle.
The ideal situation would be to have more people engaged, better yet to have the famous “it takes a village” situation. That’s my ultimate goal.
For now, since exactly 6 months and for a couple more I am the main and lonely supporter in her journey. My nest is full again. I’m in the process of working with a young woman to help me. And yes, dad is around and when in town is giving me a much-needed bear hug at night.
Let me bath in her strength. If you know Sarina I know you have been waiting for my story.
The first 5 weeks in college were the best ones for her in a long time.
Here are some highlights:
TIME MANAGEMENT ✅
This is the biggie. When your brain is constantly feeding you stories, time as we know it does not exist. You are always somewhere else.
I did put my foot down. She made a list for every day she goes to college: When to get up, walk, shower, have breakfast, leave and the evening routine. It hangs on the fridge. First she fought it, now she lives by it!
For a young woman who refuses to use lists - this is a win.
The biggest surprise happens every morning. It has to do with her morning walk. With the running quote in our home: “get the ducks in a row!”
Walking outside helps all of us. For a person with attention deficit it’s a survival tool. Sarina finally not only understands this, she feels it!
It’s a WIN WIN 👣
EVERY morning, yes every single morning on the day she goes to college, she gets up and out of the door for her walk!
SELF MOTIVATED.... I have nothing to do with it. 😄.
I summersault at home each time I hear the door shut. And, she times herself and keeps a log of how long it takes her (again self motivated… no not a list). When she started out it took her a bit longer then 10 minutes… look at it now!
This is why I don’t give up. This is why I’m Sarina’s mom.
Now I need to grow some more patience muscles to help with the next step:
not get lost in the shower (she now uses a timer!)
Here is a happy moment for me…found this note on her bathroom mirror!
This organizing in the background is my job. Yes, it’s pushing my limits. Yes, it’s helping. Thank God for Exhales!
No list needed. She is dead serious about it and super concentrated. “I want all A’s and 100% (refers to attendance and engagement in class)”. This is happiness pure! I truly thought we would run into an issue with this one.
I’m needed and I’m not. Reminds me of a book I once read, can’t remember the correct title… it went something like this: get out of my life but drive me to the movies first…
Boy, I’m walking on the tide rope with that one. My observations are not wanted, only yes or no.
GETTING AROUND CAMPUS ✅
Again, I’m amazed. She now knows where every building is on campus. It’s a really large campus with 22094 students to be exact. I was told that she came to her C2C office a few times and asked for help. Big win-win for her! She wants to find her own solutions when stuck. She texts me every day when I can come pick her up. Happy mama here!
Love this one:
She has to attend one extra curriculum event on campus/week. And write about her experience! I didn't know about that. She attends EVERY event while she is at college. Received an email from one of her teachers, congratulating her! She has forgotten to write about it. But they see her. So, no problem. She is now documenting with the help of an older student.😇
SARINA’S MOST USED WORD✅
A M A Z I N G … accompanied by a huge smile. Every day when I pick her up I see it in the way she stands there. She is finally in the right place. My heart receives an answer to my struggles and to my why’s.
6 BUCKS A DAY💸
To help my overloaded #careforSarina schedule I was looking for relief. The driving back and forth to college didn't add up. After all, Sarina is enrolled in 5 classes. About 10 hours in 4 days. I’m graving time like a smoker a cigaret. Yuck!
So I do what works for me, I sit still and relax.
Friends, only then can we listen to what our soul, our spirit has to say. I finally know that by listening to my intuition, I receive the answers. “How can I earn myself a little more time?” The answer arrived fast:
For 6 bucks/day, I buy myself about 60 minutes of extra time!. And Sarina is in heaven. She eats lunch in the cafeteria and calls it PARADISE!
🌷Documenting Sarina’s journey helps me to see her victories. It’s so easy to get discouraged in the daily grind and the suffocating feeling of “never an empty nester”.
Want to be part of our journey?
I’m creating a new mailing list for her. For now it’s going out through my Yoga with Manuela list. Will get back to you with the new sign up soon!
Sending you lot’s of special moments today!
www.neveranemptynester.com (coming soon)
Sarina has been waiting since High School for this day.
She never had a bigger dream than this:
“I want to go to college!”
Only a few months ago I was heavy with thoughts what else I could do to support her move towards that dream.
If you are new to my story about my daughter, Sarina is special. Born at 24 weeks weighing only 1 pound and a few ounces doesn’t support a strong landing on this earth. It’s a huge challenge that doesn't stop when “growing out of it” doesn't happen.
Sarina is now 27 and waited for that chance for almost 10 years.
Sarina is full of life and wisdom, bright and curious and yes, she is magical. She sees and experiences the world from a different perspective. Her sense of time is not fast paced. It’s gentle, slow and observant. E v e r y t h i n g takes a lot of time.
Sarina lives with challenges typical people don’t have. She is on the Autism Spectrum and has deveopemental delays. Her issues with Sensory Defensiveness are real.
But more then anything else does she have the gift to teach us all something. Things like compassion, honesty and patience are part of her natural being. How to stay curious and be nonjudgemental is something we can learn from her. If you let her into your life, you will never forget her. If she is not seen or looked down at because of her differences, she suffers. Like you and I would.
Today I drove Sarina to Santa Rosa Junior College. Her very first day in college was about to begin. She will be part of the College to Carrier (C2C) program.
C2C is a three year academic and carrier program. It supports the students with challenges to find meaningful education. And work in their community.
I’m on the 4th floor of the college library. In the silent zone! Next to me are young people reading or typing. I’m smiling - I too do belong here - like I’m one of them! I love the quietness. The vibe is high on devotion and showing up. I look around, the average age might be 21. If I keep my own much higher number aside for now 😅.
And - I love the view down to the main campus. “It’s called the quads, mom”, Sarina lectured. It’s a good thing I don’t have enough time to go back home between her two classes. “I do love it here!”
And I L O V E that my daughter is now part of this amazing college life. A bonus she and I deserve!
I have been standing by the window a few times. I could catch a glimpse of her walking by? I’m in a special place with myself. I don’t quiet yet have the freedom of the personal time I crave. I know it will come. The next step for Sarina is to move into her new supported living dorm. In a few month, I pray.
But I do feel a lightness in my heart like being midway up the mountain. A first rest.
My mind rolls back for a moment. After Sarina moved back home about 6 months ago I was like on remote. My time did not belong to myself. She moved to California from Germany. My husband and I from Texas.
Living with a special needs child is haunting. From the moment you find out that your child is different, everything changes. All your phantasies of raising a family turn into nightmares. Of doctor appointments and tearful nights holding on to her life.
Since Sarina moved back home, the 24/7 skin-to-skin caring has been draining. I knew this would happen. I have lived it before.
I knew early on that I would do anything for Sarina to find a life outside of my protection. I wanted her to be have a place and community of her own. When Sarina was 17 my time as her mentor, advocate, therapist motivator needed to change. All I wanted to be was to be her mother. I was crystal clear about it.
I had practiced letting go. I had felt the pain that comes along with it and the freedom. I had prepared myself. And - I had not given up on my own dream. Teaching and studying Yoga was my survival tool. It gave me the insight and self reflection to notice when the pressure was too high. When the chains of raising a special child woudl start to suffocate me.
I knew Sarina would thrive in an environment that supported her free spirit. Her hunger for knowledge and her zest for life. At the same time she needed help to learn the skills of living as close as possible to an independent life. Not sheltered and alone. And definitely not at home.
We found this possibility for her in Germany. In 2011 we moved from our home of 20 years in California back to were we are from.
When my husbands work brought us back to Texas in 2015 she stayed on. Unfortunately the dream for her did not last. The program changed. It was not supporting her anymore in the best way possible. I knew, she was now left behind.
Sarina still needs support and encouragement to follow the daily basics of a healthy life. She forgets to eat, doesn't move, forgets time and when to go to bed. She gets sucked into reading, her iPhone, TV. She starts to identify with the life she is reading about. She withdraws and in a way she becomes like a homeless person. Alone, negclegted, and weird. She needs reminders for all the daily living skills. If her day structure is sound, she can manage almost all.
I went back to what I did before she moved out. I started the grinding search for a program that would fit. Close enough to us, so we can support her and most important, love her. Love across the ocean and on Skype is not vibrant enough. Well, it's no enough. Period.
The energy I put out into the universe to please come up with a plan was not ignored. This program showed up. The only obstacle? It was in California. The land we love. But, Sarina lived in a different part of the world and we a few thousand of miles away.
Another move was necessary. Obstacles or stepping stones. Right? With the right attitude, they can be over come. This opportunity wouldn’t wait around.
Special young people on the autism spectrum don’t have many chances to live up to their dream. To look at the list of things for them to do hurts. It's painful to see. It is most of the time empty.
We moved to Santa Rosa, California in mid March of 2017. I had lived in the new home for a week when I flew to Germany to help her move back.
She needed to be here for testing. If her disability qualified her for this program, they would offer an interview. Only twenty spaces per year become available. A whole train of musts needed to be checked of the list. We met them all. I put my own life on hold for a while. The interview happened. Two days later she we got the call. Yes! She was a candidate!
E v e r y t h i n g in Santa Rosa was new for us. I missed my tribe, my support system. Since she had no day structure, I became the main motivator in Sarina’s life again. And that’s much more then a full-time job.
But this is what we have been waiting for. It was a conscious decision. Supported by a no-fear-attitude from all three of us. I knew that if we jump, we will not fail.
It was the only way to make this dream possible. My gratefulness is huge. My heart skips a beat. Hope is magic.
My girl is leaning into her new life. I gave my chains a slack, they too will be gone soon.
I gaze down again to the squad. It’s buzzing with people, energy is in the air. Sarina will make it!
I stand in stillness, observing and listening to my breath. No, there is nothing to be nervous about, nothing to fear.
Only to celebrate.
Sarina is on her way!