I wonder if I’ll ever fully develop a good sense of self or ability to function.
If any of you have followed me for a while you know that I am incredibly hard on myself. Literally no matter what I do I’m always over analyzing what it is that I’ve done and if I made the correct choice, and also if what I’m doing at that current time is the correct thing. I honestly never know if I’m doing the right thing or if BEING ME is enough. Hell I think the only time I felt semi secure was when I was in therapy over the last six months or so, and my therapist has since quit and I haven’t been able to see her in the last few months, so I don’t have her anymore/a therapist at all. Right now though for the first time in my life I feel happy but so scared. I have plans but I’m SO NERVOUS. I am on the brink of so many things that I have wanted for so long but I initiated so many changes directly before all those things. It’s mildly terrifying.
I am placing an enormous amount of trust in the people around me. Some have absolutely earned it. Others have not. I have so much legal work to do it is legitimately overwhelming me and I don’t even know where to start. I’m watching everything happen and time is running away from me. It’s all happening so fast and I just hope and pray I can keep up with everything. Even thinking of it all gives me the feeling I get when I’m around too many people and I want to explode and disappear at the same time.
I know this. I need to reach out for help more now that I have that. I am so used to taking everything on my shoulders that I forget I can lighten my load. It really is as simple as just asking. I have always had to be the one in control. I don’t need to do that at all. Quite frankly I’m better off if I don’t. I have a partner who shares responsibilities with me. I forget about the strong girl inside of me. When my body is full of weakness, it’s easy to lose sight of the strength I do posses.
I really feel like in some respects I’ve spent the last three years alone. So it’s a shock, albeit a wonderful one, to have someone to lean on regularly, and a partner to count on. The last few months have been wonderful, but also tiring. I’m glad for some events to have passed. I would say my life is beginning, but that’s not true. My life is a wonderful and amazing tapestry of positive and negative choices I’ve made and experiences I’ve had that have brought me to this point in my life. Despite it all, pain, hardship, damage to my self worth, and divorce, I still wouldn’t change a thing as always. I learned a lot and it has brought me to this moment in my life.
Expect more blogs, and possibly more Vlogs as well. I’d really like to start doing that again. I want to look into getting a good digital camera if anyone has any suggestions feel free to chime in.
So much has changed for me as usual, yet somehow through the dizzying nonsense I’m okay.
Divorce is not a word I thought I’d ever find on my lips yet here I am, and it’s okay. I think I numbed myself to the incoming blow so long ago that the pain wasn’t painful. It was releasing. Calming, REFRESHING even, not so much pain but an utter release of emotion that allowed me to let go of so much I’d been holding in for so long. Animosity, upset, hurt, not even pain but utter hurt that hardened over time. It all came flooding out and away, like floating away from it all on a beautiful wave, washing me into the shore, finally on dry land after crashing about in this horrific ocean of turbulence for so long trying to grab any solid object I could. Praying I could stay a float. I finally let myself speak out that I couldn’t do it anymore. My strength wasn’t enough. Strength and Love do not make people compatible or dreams the same. Force of will does not make force of nature.
So Zane and I parted. Now we’re heading to the court date that will begin to finalize the divorce. I’m proud of us both for knowing that we were spent, and knowing that it wasn’t best for us to stay together, despite a few hiccups in that process along the road. It’s been a long time coming. For those who don’t understand how that’s possible given the happy you see everywhere, I don’t believe in airing dirty laundry in public. The glimpses social media get into my life are positive. Who wants to hear that my husband and I were arguing pretty much non stop. Yeah, that’s not the kind of thing you share outside of personal friends. There were some who knew the extent of the damage in the fractures and foundations and I’m glad for the support they gave. I’m also so very glad I found my faith in all this.
What can I say about Matt?
Jeez, where do I even start.
Psycic, Dashie, my companion through so many things, and the man who gave me away at my wedding oddly enough. Most importantly though, the fiercest and strongest friend I’ve ever had in my life. No matter what I’ve done or how far we’ve gone from each other in life, we alway find each other. He’s hidden from the world. I’ve strayed because of stupid choices, in life, in love, and in general. No matter what he’s always been there, the boy on the other end of the camera. I want to say he was around Twenty Two or so when we met. Which means I would have been pretty much the same age as we are only a year apart, almost exactly. I can still remember meeting him. Having am immediate and instant bond with him, and finding spending time with him easy. We have played games, we have watched shows, youtube, and so many other things. Sometimes we would just sit idly and talk about whatever was on our minds. It never really mattered. It still doesn’t. I have no words for the home that I feel around him. I’m not sure I ever will. I just hope that the feeling stays exactly as it feels right now. I also hope that he feels the same.
“All that I am
All that I ever was
Is here in your perfect eyes, they’re all I can see
I don’t know where
Confused about how as well
Just know that these things will never change for us at all”
I had a dream last night, and I’ve always put faith in my dreams because it’s my sleeping mind working out what my waking mind cannot, and I think it also has foresight that I simply don’t. Matt took me to a house that wasn’t quite right. It was falling apart and missing windows. Asked me to reserve judgement till we got inside. So I did so. We made our way inside the house and it had some of the most beautiful rooms I had ever seen. Some were really well put together, others not so much. It was as if a graceful hand had started the work but never finished. As he led me from room to room there were good and bad things all around us. The structure was all good, but each place needed something. At the end he stopped me to tell me how much it reminded him of us. How we both needed repairs but that we could do it, and face anything together. That each room that needed work, needed us both. Then he kissed my cheek and walked away from me. I explored the house and took in everything he had to say. Then I worried about where he was. I found the front door and found him standing there on the porch. Waiting. With a smile. He looked at me and said “I’m right here love”. Then I woke up. I hope he’s always standing right there with that smile. Scared though I may be. That is the home I always want to see.
In the Tanakh I have this passage appears a bit differently. Either way, Esther 4:14 is where it comes from, and it resonates more deeply with me than I could ever say, and I think it will hold fast to my heart for many years to come.
Those who have been following my journey, a great day has come.
Sunday night I took a bath, trimmed my nails, made sure no barriers were upon me. I was told it was easier to prep most things the night before. Zane and I had already given Alexandr a good scrub earlier that night after he had a nice play in the muck and mud outside. I prepared my clothes to wear, and my clothing to change into, a towel, and the things I’d need after my immersion, and put them all in a small carry on style bag my husband uses at times.
Monday morning we awoke early. My husband and I, who really didn’t sleep much the night before in the anticipation, set more alarms than I can count. Between the two on the night table, my phone, and his, I think we got the message lol. Not that it was really needed. The nervous excitement coursing through me was really making any restful sleep impossible. After getting everyone ready and gathering in the living room. I sat Alex in my lap to explain to him one last time where we were going and what we were doing. I wore the same shirt I did when I started this process, and the same Star of David I wore every day. That day would be my very last day wearing it.
“This, is about how I came to find a start in my life, a path that I must walk to see where it leads, and where I believe it will lead. I say this, because for some reason I can’t help but feel that my feet already know the steps. I just need the hand to reach out and help guide me. I felt lost, yet not scared, I feel adrift, needing knowledge, yet I know that it will come, when it is time. For the first time in my life, ever, I feel like I have found solid footing in a world that has always felt so uncertain in my mind. Everything around me feels firm and planted.” – July 31 2017
“When I began this process I knew that Judaism fit well as an ideal set to my life, and the spiritual idealism was what needed exploring for me. What I found in it was so much more than I ever could have imagined. God found me, and I found God. There were seeds in my spirituality well before I started the structured process of conversion to be sure, but this last year brought out the blooms. I have endeavored to live a life that cares for myself but takes the parts of myself that can be useful, and gives them to others.” – June 18 2018
Before I even began to learn I knew where I wanted to be. I knew I wanted and needed to find out more about this connection I felt. This sense of presence around me that I couldn’t ignore. It was getting louder and louder. So that’s exactly what I had done. When we reached the place that houses the Mikvah we were to use here in Kansas City I found one of the Rabbi’s from my Beit din waiting for us. It had begun raining that morning and it took some time for the other two to make their way to us with the weather. We did our best to keep Alexandr occupied. All of them were familiar faces. My pursuit of knowledge and the amazing classes set up by our Rabbinic association had taught me much, but it does not exactly prepare you for what comes on this day. I feel like your heart and soul is what does.
Finally the time came to sit down with them all. The things they ask you are personal, not so much factual, though there is some of that. I am sure this is different from experience to experience (and keep in mind I converted reform), but this is in line with many things I read from others.
I told my husband yesterday that all of this reminded me of our wedding. It was all so fast, and such a blur. The term escapes me now but there’s a even a medical ideal to this, it happens in positive and negative moments, say in a car accident, time seems to stand still or go in slow motion, and in pivotal moments such as this, it’s like everything is going to so fast you simply can’t grasp the moments around you no matter how hard you try. The bearings fail you. I remember a lot of things about our wedding very vividly. Smells, things we said to each other. I couldn’t tell you half of the words that came out of the mouth of the officiant today. Everything has this beautiful hazy glow. Time began to run ahead of me.
At the Mikvah, time began to run ahead of me. I very vividly recall standing in front of the mirror and checking things like my nails, my eyes, my hair, and a few other places one last time. Taking out and off all my jewelry, such as my necklace, for the very last time. How heavy a symbol that was to me. I recall hearing “Naked as We Came” in my head by Iron and Wine and thinking, this is it, from here, it all changes. I also very vividly recall the walk down the stairs and into the waters. From there it moved faster than ever. The immersions, the blessings, the words flowing from my mouth and resonating in the walls around me. I will also never forget fumbling over the Shema, something I say every night before I sleep, because I began sobbing into the water. Part of the reason for this is that my Rabbi said from the other room “Now you shall recite the Shema for the very first time as a Jew”, and all I could think was that, it kept playing in my ears as I stumbled over the words. I can’t even recall what I said or what was coming out of me. Just words and sobs. I was Jewish now, I am a Jew, now and forever more. I remember my husband bringing my son in and the bright smile on his face after his immersion, and how badly he wanted to stay in the water, and letting him float on his back for a while to just enjoy the moment, as well as telling him how proud of him I was.
I think it’s still sinking in for me but it certainly was then. That evening we had a party with many friends, we enjoyed wonderful food grilled outside, and some that Zane and I had spent the last few days prepping, Israeli salad, Mediterranean grilled veggies, fruit salad that we cut little stars of david into, lots of Sangria (thankfully the weather broke!) and good company.
We gave Alexandr the name Yehudah/Judah – יהודה
We did this for a few reasons. I found this beautiful picture of a stained glass window in the sanctuary surrounding the ark in YINW in New York. It’s absolutely stunning. They have a whole wall of them if you click on it. I think they gave a wonderful start to why we chose it in the description of the window. “Yehudah’s courage and attitude towards life was equal to that of a Lion” We chose it not only for the legacy of the very first Judah, but also for Judah Macabee. Who, through his forward thinking, cunning, bravery, resolve, and perseverance against the odds allowed him to accomplish great things. All things we see in Alexandr, even now as young as he is. Our main Mezuzah when you enter our home has the lion of Judah on it to honor him as our son, and Zane (Ya’akov) as his father and I adore it. We got it when we decided on his name from someone who bought it at a bazaar in Israel and from my understanding it’s from about 1950.
I chose Hadassah – הדסה for many reasons. I could write a very long story about why I chose it, and perhaps I will another time. For now I shall say the Myrtle has a very dear and close significance in my family as I have a myrtle tree planted for me in particular. It was planted when I was born. I also feel a very close connection to Queen Esther and the kind of person she was, as well as what she represents. Learning about her spoke to me. Reading the book of Esther for the very first time was like reading about things I had gone through at times. It felt so very close to my heart.
On Erev Shabbat this week I got myself together and headed to my home away from home at synagogue. Alex was all a flutter of course. Everything was lovely as usual and I knew that they were going to honor me and welcome me officially in some way. My Rabbi stopped me and asked if I was capable of holding a Torah for very long, and if so how long? I walk with a cane and have difficulty standing for a long time both because of joint and heart issues now. Determined though, I told him I would be fine. There is a point where we celebrate individuals accomplishments for the week. I chose not to walk up as I knew there would be something different for me. After everyone said their good news or special moment (after which we usually sing shehecheyanu) he asked that we hold, as someone had a something to celebrate that did not happen very often and he invited me up. We have two Rabbis at our congregation, one male and one female, both that I adore and consider some of the most inspiring people I have ever met. They were both at the Bimah with me.
Then they did something I never expected at all. They presented me with my very first Tallit. Not just any either. A Women of the Wall Tallit. Some words were spoken about the strong women of Judaism wrapping their arms around me. Our female Rabbi wrapped my Tallit around me and the wave of sobs came all over again. Then we walked to the Ark, opened it, and they handed me a Torah scroll, which, if you’ve never picked one up, are decently heavy. I wrapped my arms around it as though I was hugging it into myself, trying to take in the moment. Remember everything. We recited the Shema again. This time I did not mess it up haha. Both Rabbis said blessings for me and I returned the scroll to the Ark. I gave even more hugs and the congregation gave me a hearty welcome. I was presented our certificates and returned to my spot.
After Kiddush and Motzi I stopped by to thank both Rabbis for such a beautiful gesture and for everything they’ve done for me.
I don’t have a picture of myself wearing this well yet, but what these women do. The bravery, the strength, I admire them, and the symbols of our four mothers, who are now my mother’s. They could not have selected a better tallit to wrap me in at all.
I am blessed, I am proud, I am humbled, I am shaken, I am loved. I am a Jewish woman and mother with a wonderful family, community, and a life ahead of me I never ever saw coming, and I couldn’t be any happier. This process has been both the hardest and the most rewarding thing I have ever undertaken in this life. I have faltered, I have excelled, I have fallen down and even been in the hospital in this last year. Nothing stopped me because I had God with me and he knew that even though my parents were not Jewish, I was born with a Jewish soul. Shavua Tov, and Shalom to you all. I’m just getting started, up next? I’m singing for Erev Rosh Hashanah and N’ilah this year! See you all soon.
“There are times that walk from you like some passing afternoon Summer warmed the open window of her honeymoon And she chose a yard to burn but the ground remembers her Wooden spoons, her children stir her Bougainvillea blooms
There are things that drift away like our endless, numbered days Autumn blew the quilt right off the perfect bed she made And she’s chosen to believe in the hymns her mother sings Sunday pulls its children from their piles of fallen leaves
There are sailing ships that pass all our bodies in the grass Springtime calls her children ’till she let’s them go at last And she’s chosen where to be, though she’s lost her wedding ring Somewhere near her misplaced jar of Bougainvillea seeds
There are things we can’t recall, blind as night that finds us all Winter tucks her children in, her fragile china dolls But my hands remember hers, rolling ’round the shaded ferns Naked arms, her secrets still like songs I’d never learned
There are names across the sea, only now I do believe Sometimes, with the windows closed, she’ll sit and think of me But she’ll mend his tattered clothes and they’ll kiss as if they know A baby sleeps in all our bones, so scared to be alone”
I cannot get over the symbolism and beautiful undertones in this mans music. I have listened for so many years. A friend introduced me to his music when I was much younger. As I have aged, so has my understanding of things of course. As life continues so to does our knowledge and acquisition of it. I like to believe we become smarter as we age, though I’m not sure that’s true for all people. I have always strived to keep my mind sharper over time, seeking more to feed it. I am seeing every single song of his in a brand new light.
Granted I’m probably the last horse to cross the finish line on this one, though that may be, I’m fascinated. There is so much more substance than I ever knew in some of these songs. Of course “Jezebel” has always been easy to identify.
“Who’s seen Jezebel? She was born to be the woman I would know And hold like the breeze Half as tight as both our eyes closed
Who’s seen Jezebel? She went walking where the cedars line the road Her blouse on the ground Where the dogs were hungry, roaming
Saying, “Wait, we swear We’ll love you more and wholly Jezebel, it’s we, we that you are for Only”
Who’s seen Jezebel? She was born to be the woman we could blame Make me a beast half as brave I’d be the same
Who’s seen Jezebel? She was gone before I ever got to say “Lay here my love You’re the only shape I’ll pray to, jezebel”
Who’s seen Jezebel? Will the mountain last as long as i can wait Wait like the dawn How it aches to meet the day
Who’s seen Jezebel? She was certainly the spark for all i’ve done The window was wide She could see the dogs come running
Saying, “Wait, we swear We’ll love you more and wholly Jezebel, it’s we, we that you are for Only”
That said, it’s somewhat easy to identify that all of his music has ties to theology in some way (from what I read he is formerly Christian, and labels himself Agnostic currently). Thus of course not all of this resonates with me personally story wise being Jewish, but seeing the beauty in the artform is no less amazing. Knowing that a fair few of his songs were based in biblical reference was one thing. Seeing him weave this in such a way that songs I used to believe were simply about a man, woman, and a dress are not so, is quite incredible.
If any of you are unfamiliar with his work (Iron & Wine being the band name, though he does all the instrumentation and vocals) if you have ever seen movies such as Twilight, Garden State, or In Good Company, you’ve likely heard his songs. “Flightless Bird, American Mouth” was used in the Twilight series so it’s pretty familiar to most.
Sometimes things are not always what we first see, and sometimes, moreover, oftentimes, age gives us wisdom to see beyond what we once saw. Listen to music, listen again, read books once, twice, three times, then read them again.
During our last class we spoke of Ecclesiastes and the main question the younger people in class had was WHY is SUCH a sad book included in our reading for such a joyous occasion (Rosh Hashanah)? Now I’m not sure of everyone’s ages. I do know I’m one of the older individuals, and I do know for certain I am one of the only ones with children, I am still green in my years to be sure, though more seasoned than some. That said I felt it was an important inclusion in the readings. I listened intently as the Rabbi explained that the book is important at this time, so as to show us that we will leave this world the same as we entered it. “As he came forth from his mother’s womb, naked shall he go again as he came, and shall take nothing for his labor, which he may carry away in his hand.” Ecclesiastes (5:15). King Solomon realized too late in his life that all the materialistic items in this world would not matter once he had perished. Thus it leaves a depressing tone to the book to be sure, as there is a lamenting to the time lost. There is also a beauty in the realization of what is truly important. For that is the lesson taught. The bonds, the time we have here, the need not to look forward to work toward “what comes next”, the living here and now for those around us, that is the importance of it during Rosh Hashanah and even more during the reflection time coming into Yom Kippur in my personal opinion. In assessing your shortcomings, and the things you wish to improve upon, it is ever important to recall what truly matters in life.
The point I’m making on it is this, go back and revisit things from the past with new eyes. You never know what your new perspective and the wisdom of age will give you. Fresh ears too. As we move forward in life we grow, and that growth unlocks so many things in us. Push ever harder to be a better version of yourself, more giving, more loving, kinder, harder working. Not just during the times of the year we are told to do so, but all of the time. If we all did the world would be a much better place for it. Recall that life is fleeting, we are small in the place that God has created for us, and we return to Earth once we are no longer here. Marvel at the beauty around you. Drink it in. Live in it, while you can, for as long as you are given.
I am forever surrounded by books! Though I couldn’t be happier about it, we are ABSOLUTELY going to need another bookshelf hahaha. So my journey presses on, and I push forward. Learning Hebrew has been such a treasure. To stop and think of what the letters under my fingers mean as I learn them and recite their sounds aloud. To process in my mind the weight they’ve carried in the past, through generations of Jewish communities. The beautiful and holy words that have been carried in this language that is so utterly complex, but fascinating beyond measure. It will take an immense amount of study to fully speak or understand everything in this language, but I figure if I could do it to learn German, I can do this over time. Beyond that, German was a hobby and interest based partially on my interest in Judaism in the first place.
The more I learn and immerse myself, the more convinced I become that my life has been a series of necessity. I have always been convinced that the horrible atrocities suffered in my life had been just scathing misfortune. Now more than ever I feel that my life was and has always been a preparatory event for multiple things. Just as people in general were not immediately ready to accept covenant with our creator, neither was I. Nor was I ready to accept the things I have experienced, or the reason for most of them. I am slowly beginning to understand the purpose for them. I fully believe my life as it stand is part of that reason. My family, and the life I am living. Without the experiences I went through and the things I endured, I have never believed I would be the person I am, and I have always said that. I am strong, and I do many things well. I would be ignorant to ignore the hand that I believe played a role in my life from time to time.
I took some classes recently at a learning event and the Rabbi from my Congregation made a point. Throughout history there have been times that the Jewish people have been saved, protected even, when they would have otherwise met with great peril. If any of you know me well, you know my life has been more than perilous. There have been so many times, a great many, that my life could, and should have ended. Somehow though, it did not. I was kept safe. Even when all those who were supposed to protect me had left me behind, I had a hand on me from somewhere. I have always been kept safe, and now, I owe it to everyone in my life, myself, my husband, and child to make the most I can out of the life I’ve been given. I will learn all I can. I will help others as much as possible, and I will be as good and kind as I know how to be. That is what I have, and that is what I am called to do.
With the month of Elul upon us, and my class tonight being about Rosh Hashanah, I have begun spending a lot of time on introspection. Shabbat services last week included the sounding of the Shofar, and the start of Sermon-In-Song which was absolutely touching. Every time I attend it’s like observing a living, breathing, captivating work of art. I can’t help but to begin to shed tears. The depths it adds to the feelings in my heart on my own spiritual journey is something I cannot put into words. They outright escape me, but suffice it to say it’s awe inspiring.
I would rather think of life of as a good book. The further you get into it, the more it begins to come together and make sense.
This quote is credited to Rabbi Harold Kushner, I feel like it could not be more relevant to my life, in general, or right now.
When I think over my life there has been a large amount of pain, turmoil, and hurt, but there has been joy, and love, as well as extreme happiness. I searched from a very young age for more. From Catholicism, to Evangelism, Judaism, to even Buddhism. I have learned a great many things about what those around me had believed.
I have always felt there was more in this place than random design. Weather it be anger, sorrow or stubbornness, I have chided away from this in the past. I have gone to churches, tried to feel welcomed and fit. How could I ever find a home in a place where others were hated? Where a good and loving God would cast aside those who were different, and it was my duty, nay, calling to judge them and cast them away from me, or even worse the love of the creator of us all? There was no part of me that felt at home in those places, though my faith and connection spiritually never disappeared. I suppose you could call it a spark inside of me. A light that shone, even if it was dim at times.
This, is about how I came to find a start in my life, a path that I must walk to see where it leads, and where I believe it will lead. I say this, because for some reason I can’t help but feel that my feet already know the steps. I just need the hand to reach out and help guide me. I felt lost, yet not scared, I feel adrift, needing knowledge, yet I know that it will come, when it is time. For the first time in my life, ever, I feel like I have found solid footing in a world that has always felt so uncertain in my mind. Everything around me feels firm and planted.
I feel just as sure about the choices I am making now as I did choosing Zane, falling in love with Zane, and marrying him. There is nothing but clarity inside me. I feel as steady inside as I did in the NICU with Alexandr, knowing that I was his mother, and somehow, we would make it through. So many nights I sat in my glider or on my knees, holding the number to the NICU unit in my hand in the dead of night, crying, and praying, waiting to call and hoping for the safety of my child. I know he was kept safe. I’ve never lost faith, I’ve just never known where to place it, I’ve never known a home to hold that faith.
Next month I will begin a year long spiritually educational journey. A pilgrimage of my own as it were. I will immerse myself and our family fully to the practice and observance of Judaism. Every day I work to enhance my spiritual relationship with God. I will work very diligently to learn all I can and to live as Jewishly as possible, and raise my family this way. This includes following as many practices as we are able, including my fumbling attempts to convert our household to being Kosher (which has been mildly amusing).
I know I’m going to get this question from some, yes, my husband is Jewish. This however is not my reason for conversion. We have been married for some time now. Two years on Valentine’s day as a matter of fact. That said he has been non practicing for as long as I have known him. We are embarking on this journey of spirituality together, and feel it is a wonderful thing for us all, and is the way we want to conduct our home. The idea to convert was actually my own, it has been something I have considered for years. Starting in my teenage years. Sometimes you are just called from within. I believe Judaism called to me and always has.
If I haven’t told you personally about my conversion know that I told my family only directly and felt that announcing it this way was the best way to go about telling others. If you have any questions you’d like to ask me about it, any curiosities feel free to ask me privately, or comment. I am looking forward to this journey, and hope to share in some of it with you. I would love to hear from any of you who have gone through the conversion process, or talk to any of you who may be considering it.
I feel very much like my spiritual heart has found it’s home.
(The pictures at the top are my Magen David, to commemorate the start of my journey we decided a modest pendant to keep me in touch with my path, and remind me to pray was in order.)
When you’re the mom of a kid with special needs you work in steps. Sections. Small plans. You can’t ever look too far ahead because then everything gets too chaotic, too fragmented, and just too hard to handle. So you work in compartments. In our case it started with Alexandr’s first set of therapy last year. It was a six month compartment, and we set goals. There are always goals, things you hope to reach and see. Little milestones. Small victories. You hope for the best and you try to tune out the children around you, parents too. Not because you’re trying to be mean. You have to, for me when I take in those around me, it’s too much of a reminder of how far we have to climb, and an ever painful truth that we may never get there.
It’s a constant face to the forefront that my beautiful little bear, may never meet the world’s standard of “normal”. I have mourned so much from pregnancy to now, that it has been hard to handle the roller coaster of emotion that comes along with this. When the time came for me to go into the hospital at 30 weeks for the first time, I thought maybe, just maybe, it would all be okay somehow and it was all just a dream. I’d get out and go back to “normal”. Normal. You hear that word so damn often and I hate that word. I wish I could throw it out. What is normal anyway?
I had no idea when I took this picture, alone in my hospital room, that a few short weeks later I would be sitting in an operating room holding the hand of a man named Darrell, my kindly anesthesiologist as he assured me it would all be okay. They were telling me my son wasn’t getting oxygen, and that something was wrong. Dr. Adams, the man who would deliver my son, told me not to worry if I didn’t hear him cry. He probably wouldn’t cry, as they delivered my spinal block and did their best to make sure I was numb prepping me for my c-section as Daniel waited outside.
A short while later Alexandr made his entry into this world and nothing about it has been “Normal” since then. I spent time recovering from my c-section brushing up on infant CPR and learning how to clear his airway in an emergency. Sadly I had to use that once. No one should ever have to see their child turn blue on them. I have.
Alexandr has spent his life fighting but he is here and was released after just under a month in the hospital. When he was almost two years old and could only speak a handful of words, spent more time being entertained by the ceiling fan than his toys, and took no comfort in my embrace. I began to worry. Six months ago right around his second birthday Alexandr was officially pronounced to be delayed by about a year. We truly had an issue. I felt like I had failed him once again. As much as I struggled and felt like I failed standing in that hospital room, standing in my living room after his therapy team left, I felt even more so. That’s when I began to hate the word “normal”.
Alexandr now has glasses as well as Nystagmus which is an uncommon issue where his eyes bounce back and forth, which, he isn’t aware of and cannot control, but can be seen by anyone who looks at it from an outside perspective. Another difficult blow, another thing that cannot be fixed.
After six months of the knock down fight of therapy, Alex has seen good days and bad. We have seen progress but not forward motion. Recently we had a blow to our guts. His therapist came to me and finally said the words that I knew were likely coming but that every parent in my position is so afraid of.
She told me that we should have him screened for Autism Spectrum Disorder. They fully believe him to be on the mid to high functioning end, but ASD none the less.
Compartments, sections, little victories. We struggle every day and we spend our time looking at the smaller parts of our world because we cannot look outside, we cannot compare or big picture.
I took a step back from all of this.
I spent so long blaming myself for all of this and feeling like such a failure for not being able to give him everything, and allow him to have a life free of struggles. I felt as though I had to have done something, anything, to cause this. I know that I am wrong, and nothing I could have done would have made any of this better. I also know that “normal” does not matter. Alexandr is extraordinary.
Alexandr does things in a very special way. Alex sees the world in a way I will never ever see it. I am lucky to be around him. When I finally stopped trying to reach “normal” I found him. I found the beauty in my son just as he is. He shows me every day that he is there, in there, he may not show me in the way that everyone else’s son does, he does in his own way. Alex’s way. Alexandr is a superhero all his own. He hit a small breakthrough recently, and we have seen more progress, he has even found a unique way of communicating.
To other parents, I want to relate to you. I want to relate to parents who have children that carry on conversations with their three year old. My son does not even answer to his name yet. Please never misunderstand me, I cheer for your children, but I do not understand what that is like yet. I wanted to shout from the rooftops because my son who is almost three decided to use a fork for a few bites of his food.
My son still only knows about fifteen words, he often melts down at stores because of the noise, lights, and people, and my daily stories are not the easiest to tell. I spend my days, weeks, and months in small victories, baby steps, and compartments. Please don’t ever misunderstand us, we have to work in these ways to survive. Our time is filled with individual education plans, occupational therapy and speech therapy, and which toys should we buy for the engagement bin. How can we improve our sensory corner? Parenting for me is so very different.
I had a woman stop me during a time where Alex was completely overwhelmed by the grocery store, at the end of a very long trip, he was screeching at the checkout. She leaned over to me and told me I needed to learn to discipline my child.
Our world is different from yours, please please understand we are doing our best, and our world is just not the same as yours. I know at least for Alex, Zane and I, we do everything we can do get through this all together, the best we know how.
We try our best to find joy in our lives, we celebrate Alexandr for exactly who he is.
Besides, what is so great about “normal” anyway? This life is dizzy, it’s hard, and everyone, even people who have children that aren’t special needs may not have it easy, so we celebrate him. He is our superhero, and will always be.
We love you Alexandr, and no matter what, one compartment at a time, we will get through this.