Is the Bible relevant?

I am not going to get all theological or philosophical on you. This post is about three instances this year that I have gone through that repeatedly amazed me with how closely related they were to Scripture. This is just about me personally. This isn't me trying to prove anything other than the fact that an ancient book has a way of making me feel completely and totally NOT alone anymore.


Whenever I process something I have to get out it, usually multiple times. So if it was a bad day, I have to tell my husband, if it was really bad I tell my husband and my best friend. When I am processing something emotionally or trying to wrap my head around a new perspective I tell lots of people. People that care, mind you. People that know they are on my "I-process-things-through-opening-up-to-you" list. I don't even do this intentionally but apparently the need to hear myself say something over and over again convinces me of it's truth. This has happened a lot over the last year and half, as you can imagine, with all these shiny life lessons I get to learn through suffering (can you tell I am gritting my teeth through that sentence.. still smiling!).
One of my more recent thoughts that I kept repeating was "I can think of a lot more people better equipped for this than myself." no REALLY. Did you want a list God because I have a good one. I mean I have friends that are so good at being selfless and accepting, and at the same time they are the best researchers--- they will find an answer to every mystery. They would be awesome "special" parents. Instead of myself, whom hates trying to find answers, doesn't trust medicine, gets really frustrated by uncoordinated people, plus let's add in that I am super emotional and sentimental about everything! I had such little exposure to people who lived differently, who's bodies worked differently. This is uncharted territory for me--- and I am not comfortable! (Fist shaking upward). Eh hem... composure. So in this repetitive phrase of "I am not cut out for this/there are better people for the job" my friend asked me....

"Didn't Moses say that?"

maybe.
yes.
He WAS waaaay underqualified. Oh stuttering Moses. I get you. What a big HUGE thing God asked of you that you were not comfortable with. (If you don't know what I am talking about this is where you go read yourself some Bible)

Once I had this reminder, that God does this all.the.time. I realized why. Remember how it brings Him Glory to choose people who it is obviously not by their own merit that anything good happens? If God gave John Michael to a Physical Therapist/alternative medicine guru, we could all look at her and say wow she is awesome! Look at how good she is at that and all the amazing things her son can do because she is so cut out for that! God always brings us to depend on him. Just like our babies depend on us, it is only fitting. He equips us in the moment with the wisdom and strength we need, not usually ahead of time.



The second instance is from way back earlier this year before I was pregnant and I actually did some hard core running. Hard core for me. Which meant running for five minutes without stopping for a break (there is a reason I am a dancer). Whenever my nervous system had to release all this pent up emotion I would go for a run and somehow feel like if I ran really fast all my problems would be solved. I could imagine I was running to get out of the dark cloud or sometimes I would imagine I was running towards John Michael, choosing him. This particular time I was running, I was in prayer. I do believe that God seeks to be Glorified in all things. Because if everything that is good is of Him, and if the only way for us to know anything good is to know Him then of course He wants to point us to... Him. As I was praying I was being convicted of this, that He sought to be glorified through John Michael. And I cried out ,

"BUT IF THERE WAS ANY OTHER WAY!!!!!!!"

Who said that? hmmmm someone did. Yes that is definately in the Bible. You probably already know but I think it took me a minute. Let me tell you, my Jesus, knowing the suffering that was coming, cried out to God and said "If there was any other way." If you, God, would be more glorified in an overnight healing of John Michael-- do that! If more people would look to the heavens giving thanks to you for seeing him make steady progress, or how about this... when he grows up he can be a speaker like Gianna Jessen? Or a singer like Andrea Bocelli? Do those things, choose those God. They bring glory right?
I actually wrote this to my breast cancer warrior recently. We like to think that we know the best outcome is her healing. But just for a moment what if it is not? How can I know? I don't have eternal vision. I can't even picture my life 10 years from now. I wish so much that there was another way, but what if this IS the best way? What if I will be blessed the most by his not-healing? I don't know the answer, and I won't. But I do know that Jesus ended that prayer by saying "Not my will but YOURS."

Give that a minute before we go to the last one...



The most recent story is a dance studio one! Sometimes I feel like doing an expose on the life of a dance teacher. It should be all sparkly and happy and little girls giggling right? That would be awesome. That is why I do this after all. For my students. Thankfully the mama drama that comes out isn't as bad as Abby Lee Dance Co. (SIGH) but it is still there. When I was thinking about this in bed this morning I realized this is a normal part of life. I mean everyone has a riff with co-workers or clients? Isn't that routine for working with people? I don't handle it very well. I want every to LIKE me. I want us all to be friends. I don't like the smell of burning bridges. Something happened this year and it basically boils down to I am not being forgiven for something I didn't do. (That is not a typo.)This was earlier in the year, and I am still thinking about it. I seem to have trouble letting go of something that isn't even in my control. I was thinking about how desperately I want to be forgiven, how it hurts to take the blame for something when your intentions are good, when I saw again Jesus, only this time on the cross. I never really thought about his emotional pain. The physical would have been enough, but the pain of being hated by people you love, the pain of people being ungrateful for your gift, the pain of blamed while you are innocent. Jesus was only ever LOVE. If someone must take the blame for this person's hurt, I will take it. If you choose to not forgive me when I only ever gave Love, I will try to be like Him who suffered much more than I. Now that I think of it this applies to a lot of people. This situation is not unique to me. I am sure you have people in your life that misunderstood you and because of such treated you harshly. I am not saying we are all innocent. I am sure more often than not we are wrong in our actions and should be sorry, we are selfish.


So this whole idea that the Bible is outdated doesn't even make sense to me. There are feelings and experiences that every human naturally goes through and that hasn't changed.
And you CAN find comfort in an ancient book.

The Latest Mantra

Have I mentioned how much I love mantras? I think it keeps my head from spinning.. or sinking rather.
Here is my latest and I gathered it from something my midwife said this week.

"Celebrate Life as it IS"

Not how it should be. Not how you thought it was going to be. Not even how it looks like it will soon be. But just today the way that it is. I love driving anywhere this time of year in Kansas. (Don't get me started on how much I will miss it if this is our last real fall for a few years!) How do you decide which jewel toned leaf is your favorite? I think in general my heart calms the most when I look at the trees that are golden, but that is usually just when they are standing next to a tree clad in red or orange. That is why it is so enticing to look down every street, they look so different because of who they are standing next to.

In front of my midwife's house is a small sugar maple that is red like fire. It is magnificent but mostly because it is next to an almost identical tree that is still all green. Everyone stops and stares. You want to take a picture. You point it out to your kids. We actually discussed the beauty of the tree in my appointment (that is why midwives are awesome). She encouraged me to work on celebrating my life the way that it is and focusing on things like the glory of that tree.

My first reaction to something like this is often one of offense. No matter how beautiful that tree is it doesn't compare to the pain I have carried. How does it do any good to look at it and be thankful that I got to see it?

I was convicted very strongly last week when I read in "Calm my Anxious Heart" that if you don't find a way to come to acceptance with your current circumstances you will ALWAYS have a spirit of discontent. It smacked me in the face. I have been really been struggling with accepting my reality, thought God knows how hard I am trying to. Mentally, I have been resisting it. But if I don't find a way to accept this I never will. I could live to be 50 years old and never come to terms with this. I HAVE TO CHOOSE to accept and embrace it and claim it as my reality.

So by looking at this tree and choosing to be thankful and to enjoy the pleasure it gives just to look at it and nothing else is a way of finding beauty, peace, and goodness. To recognize that I am still surrounded by good things even if it doesn't feel like it makes up for the bad. Even if the best part of my day is a red tree, or one quiet cup of coffee in the morning. It's okay. It's okay that it doesn't make up for the rest of the stress that comes. Or that it won't heal what hurts. But my only other option is to say no I can't enjoy that one small thing because I am sad and everything is sad. Which seems rational. Man, I would be miserable.
Maybe if we relish those little tiny things we won't focus so much on the big things that we can't change and wish we could. More money, cleaner house, calmer kids, more time with friends etc. Try repeating over and over "I am going to celebrate my life as it is."


The sacred is everywhere, but you have to look for it....

the place between acceptance and hope

I am tired of hoping.
All I want to do now is to be here and accept that I am here. I have been trying to drill this into my brain and I have been repeating mantras like "this is my life" over and over just so I can get to the point of acceptance. Living in this battle between acceptance and hope is relentless, it has worn me down and I am done.
This is actually a really huge step for me.
I have been fortunate to become phone friends with someone who is an similar situation only her sweet boy is three years older than mine. I want so much to be where she is. I love that she can hear the things I have to say and identify 100% with me but say that is where she WAS. Yes it's still hard, probably really hard but it has become her new normal at long last. I want to stop missing normal. I want to stop feeling jipped and forgotten when people speak in generalities that leave out my son and me.
This last week John Michael's intense spasms that have left me sobbing have taught me to let go of the death grip I had on a fistful of things I was not willing to see happen. Such as the inevitability of seizures, a feeding tube, a wheel chair etc. These are all things that initial doctors gave as a prognosis and I refuted it all. I wasn't in denial I just thought enough aspiration and perspiration and faith could get you where ever you wanted to go and you are allowed to just down right refuse possible outcomes and because of that refusal they won't happen.

Let me put it this way;
Whenever we have a new mom join our CMV Facebook group everyone gives the advice "don't have any expectations, just love them and let them show you who they are going to be."I feel like the truth is had I done that more maybe I wouldn't have been tormented so. That is why I cry at the thought of breastfeeding. Because I tried so hard for so long, with every ounce of hope and belief in miracles I had in me. I had an expectation. And it didn't happen. Just like when he was a few months old I had an expectation that surely when he turned one he would hold up his head. I was desperate for ANY signs of progress. So desperate that the hours and hours he has spent having "tummy time" it felt like a blade to my heart to see him just lay there content to be listening to music but not interested in going anywhere or looking around. I felt so helpless... I couldn't make him lift his head, I couldn't show him the way. But when HEALTH is on the line it teaches you to be grateful. Since John Michael has had these spasms and I realize their seriousness, that they could dammage his brain more or cause regression, I have been able to lay him down on the floor and just be happy that he is happy and not hurting or scared. I can't fix him. It hurts to say it, but I can't. I don't have many ideas left on why this happened or what I am supposed to do but I am tired of trying to change it.

I feel like I can breathe a little better. Hopefully this is a good direction for me and not just a more cynical one...

Something's coming...

So remember that part about me having to explain everything about myself? Yeah about that... this is me trying really hard not to explain myself.




Something has happened. Dreams are taking shape. little nubs for legs, the rhythmic beat of a life, the meaningful size of a grain of rice.

We have come such a long way in this last year. And yet in so many ways I still feel stuck at diagnosis day. Like my psyche hasn't moved on. Well I am working on that part, but a huge journey we have traveled is the thought of more babies after a special baby. When we brought John Michael home after his diagnosis I had a strong desire in my heart to have another baby... SOMEDAY, even if it was far far away. Even though that is what I hoped would be the truth I wept that it might not be a choice. Was it a universal rule that if you have a child who needs extra care there is no way you can add more members to your family? How would I even make it through pregnancy while taking care of a special child let alone have a newborn?!? The thought that if John Michael never learned to nurse and I would never get to be so intimately close and bonded through breastfeeding with another baby ripped my heart. I wasn't ready to say goodbye so unexpectedly to such a special part of my life--my identity!

I was surrounded by nursing mothers whose babies were held skin to skin, and got that drunk look. All the while the only time I saw that look on my own baby was his first NG tube feeding when he had, for the first time in his life, a full tummy and could relax. Then as the babies grew they gazed in their momma's eyes like she was a magical lady. They reached for her face like she was a flower. It was these little moments of connection that I missed more than anything. I did have it with sound though. I was blessed to know from the very beginning without a doubt. My baby knew my voice. He knew if I had left the room. He lit up when I started singing. I was so glad to have that! And the things John Michael hasn't been able to have made me stand, eyes wide open jaw hanging at all the other babies and children in my life. I love seeing my kids reach for a toy and make the sound that goes with it. That little thing seems miraculous. I love how I just show my young dancers a new step and they follow behind me. Just like that! It is the "life is a miracle" eyes that John Michael has gifted me that put an even stronger desire to grow another baby in my heart. I want to have those eyes with my own baby that I can see them for the miracle they are.

I can't speak for everyone on this, but it seems that anyone who has had anything happen to their child through loss or trauma either has a strong desire to get pregnant again right away or they can't fathom taking the risk and going through it again. I felt that there was mentally no way I would survive a pregnancy. Even though John Michael's pregnancy was amazing and the birth itself was not traumatic the thought of forming a baby was terrifying. I thought I should probably recover for many years until I was emotionally stable. Then my language changed. Instead of "IF we ever have another baby" it became "when." Then all of a sudden a huge transformation happened in both my husband and I. The details are too close to my heart to just put out there in cyber space but there were two instances where God made it VERY clear to me that not only would we have another child, but that it was HIS way of healing the pain my heart had been through. My husband and I talked and where six months ago we would have said "no way, no how, see ya" we were both on board for what seemed to be our hearts screaming at us even if it didn't seem logical.

I know I still have a baby. If you think about it even when a woman gets pregnant weeks after giving birth, her baby is usually mobile by the time the newborn comes along. I am not guaranteed this. So it is like choosing to have twins, only one big one little. People have twins right?!? not the end of the world. With the possibility of us moving within a few years time we knew we wanted to have the baby while we still lived here surrounded by our support system who knew firsthand what we have been through and the extra struggles that come with it.

The amazing thing is it was one of those beautiful one time "okay God if you really are saying we need another baby to heal we are giving you ONE shot." we didn't try for months (or even days) and we knew that timing wise looking ahead in the next year if it didn't happen this one time it would have to wait till we knew our plans for seminary. Re-reading that I realize it sounds like it was a spur of the moment all of a sudden I have a hankering for having a baby. Even though it was sudden it wasn't. It had taken us many miles to get there.

...and so 7 weeks later, sick as a dog and miserable as ever I have finally come to terms with the fact that the overall the formation of this baby is out of my hands as was John Michael's. So much guilt I carried has been lifted. I really did do the best that I could, as I will this time. When I pray over this baby I say "God protect it..." and I can't help but add "just like you did John Michael." It seems strange, but I recognize even with the severity of the damage He really did protect him. His presence is a daily reminder that God protected him, and still does every day.
I have already had THE conversation with God about placing my order for a typical child who nurses with no problems and go ahead and make it a girl for Juliah! I am sure he gets a good chuckle out of my demands. In my heart I know I am not exempt from more heartache just because I feel like I have gotten my share. I can't hold up the "I already have a special needs child" sign. There are people that have multiple special kids. I can't expect perfect. Though God knows what we need and what kind of child this needs to be. So I leave that up to him. (But I am telling you now if he sees me fit to go through something similar again I will beg to differ).

The amazing thing is the instant transformation that occurred after finding out about this baby. I automatically started seeing John Michael differently. Like all the things that I had lost with him this last year are now put onto someone else. I am sure he is relieved :). Having this baby is stepping out with tremendous faith and courage. It is making a statement that our dreams live on. That what we wanted for us as a family doesn't have to be taken away, we just have to work harder than some to make it happen.

No matter what, this baby has already become our Rainbow Child. The child that brings signs of hope and new dreams after lots and lots of rain.

Yes it is crazy. completely. And I am totally NOT in the mood to be pregnant. But I couldn't ignore my heart.
When Kelle Hampton found out that her daughter had Down Syndrome she looked at her doctor and said,

I am going to do this like you have never seen before... and it is going to be amazing."

That is how I feel about this choice. I don't know have anyone close to me that has done this, nor have I. So instead of predicting how hard it will be we are just going to pave our own way. And it will be awesome.

I am reading "Nurturing the Soul of Your Family" by Renee Trudeau, and this rings true in this season of life;

"It takes tremendous courage and desire to live an awakened life: a life where your actions are in alignment with your deepest values, where you're making decisions that support your family's emotional and spiritual well-being. Is there anything more important? Is there ever a better time than now?"

This baby will be good for each of us in a different way, and we all want it so badly.

To be understood

Deep breath. It has taken me the longest time to formulate this post. It is something I am still trying so hard to work through. Loneliness and Isolation are evil twins that only bring pain. Let's back up...


I have a strong desire to be understood. I think that is why if you ask me how I am, you might find yourself getting a really long answer. Maybe if I tell you everything I know about me you will get me. Far fetched?

When we were kids no one in the house was allowed to use the word "weird," no matter what it was you were talking about. I was very sensitive about the word because it was used about me one too many a time. Even though it was meant in jest I didn't like the idea of being unusual. I really didn't like the idea of people talking about me out of ignorance and assuming things without really knowing me. I was desperate to wear glasses or retainers or break a leg because I thought that was normal.

You must be chuckling a little right?

My life has been pretty unusual by todays standards.
TO start: My parents have stayed married, even through really hard years.
My spouse and I had not only never dated anyone else, we were virgins when we got married.
I was married 3 months after high school graduation, the only married dancer I knew in college.
Stayed in college while pregnant and took my baby with me to school for a year.
on and on...

As the Leading Actor in our own movie we usually feel like all eyes are on us but I felt that at times I really was a different color than everyone else. Though it wasn't until I opened the dance studio that I really realized I was going to have to be okay with being criticized, very likely misunderstood, talked about. It's only natural. I am sure it happens to all teachers of different kinds. You are being evaluated for better or worse. I was thinking this last week that someday if I am not a dance teacher (wwaaa don't even go there) maybe someday I will just be another person again. And then it hit me, my husband is going to be a priest... we will always be talked about. Likely to be misunderstood.
Not everyone has to know my every thought.
I have verbalized almost every feeling I have had to some close friend or another and yet it isn't enough, even with My Love as much as he tries he cannot truly understand my feelings or take away this heavy weight I carry.
There is only One who has felt this pain and joy, who knows all of my tears and wipes them away.

I have been thinking about this part of my favorite prayer (attributed to St Francis)

"...May I not seek to be understood as to understand..."

I have to get used to being misunderstood. I can't tell every stranger John Michael's life story. I have to settle that desire and turn that passion outward and try to see into the hearts of those around me.

I just happen to be listening to Les Miserables and just heard
 "To love another person is to see the face of God."

Often times I feel completely alone in my grief. Although I always know where to find someone who will listen. I can rarely find someone who understands. Maybe since I don't understand myself. I can't explain this pain or why it torments me so. I wish I could just be completely grace filled and content. But part of praying for a miracle leaves me in a place where I don't want to accept the present or past. If I really believe things will change, which I do, maybe if I just keep floating on the surface this nightmare will pass and I will wake up to the life you all live in. Where you worry about your kids grades or if they are eating the right foods, or what you will do this summer, or how you will sleep train them, or if they will get into college etc. When you think the most stressful part of the day is not having a moment alone in the bathroom, I wish my son could follow me into the bathroom and pull on me. I wish he was draining me of my energy because I was chasing him and cleaning after him as most toddlers are. But my worries aren't like yours. I worry I will outlive him. I worry he will never tell me loves me with his mouth. I worry I will never be able to teach him how to do a Plie as I have my other kids. I worry people will always see us as "different" or "heavy burdened". And I since I am not really the "worrying" type, it is more that I grieve these things. I grieve just the fact that they are a possibility. When a bereaved mother is hurting because not all of her children are there to give her a mother's day card I cry that maybe my son will never be able to color me a picture either, even if he is here right now. I am sure to a person who cannot understand this probably thinks "look at the bright side" but that doesn't acknowledge the hurt. the hole. 
I suppose THIS is why I haven't published this post yet. Because I am still not really in the place to know how to end it. I know the things I should focus on and pray through and for. I am sure there will be some delightful words of wisdom I should be ending this with but I don't have any yet. 
I am just tired of feeling like I am in the world with you, but not in your world.

Sacrifice

Sometimes I have an AHA! moment that feels profound and like a radical shift in perspective and then I think well maybe this is just me growing up. After all it was only a second ago that I was slipping my fingertips under my parents door in the middle of the night just to be near them.

Back in November when I had, what shall we say... cracked? I stopped everything and took John Michael to the Rivendell Motherhouse located in Amish country Missouri. Rivendell is a recognized Christian Community of the Episcopal Church, where people come from all over the world for their own spiritual retreat spent in prayer and solitude. They give you a place to sleep in their large cozy farmhouse and feed you. I just wanted 24 hours.  24 hours to pray, to meditate, to ponder, to question, to come clean with God. It wasn't spent in complete silence since I had an adorable snuggle bud vying for my attention. I prayed with the companions in their beautiful chapel services held throughout the day. Best of all, we walked the nature path that surrounds the farm. There was a little tiny dog that lived with the community that showed me the way, I didn't care where we went. The air was so clean and fresh (that kind of oxygen that we miss so much living in the city). Every few yards there was a bench placed under the beautiful trees. We stopped every time. It matched very well with where the prayers were leading me. I started out confessing and confused.

In the Christian tradition we believe that we are called to a life of sacrifice. I have always been drawn to Romans 12:1 " Therefore I urge you, brothers and sisters, by the mercies of God to present your bodies as a living and holy sacrifice, pleasing and acceptable to God. This is your spiritual act of worship."

I remember talking with my friends about this in high school. Thinking about the practice of human sacrifice. Laying the body on the altar. In this case we are not physically taking a sword to our bodies but we are A LIVING SACRIFICE. We offer up everything in our lives right down to all the decisions we make big and small.

At the first bench, I had come to the realization I needed to RE-let go of my life. I needed to let go of my bucket list. I had been dealing with feelings of having ALL my dreams for the future being shattered. Even though the truth is with an uncertain future it doesn't mean that I will no longer be able to do anything I had once hoped. I do believe God puts desires in our hearts for a reason. But it hit me that Christ didn't come to this earth to visit Scotland. Let me rephrase that He didn't put ME on this earth to visit Scotland, write a book, become fluent in sign language, live on my dream farm nice and quiet without a care in the world except for milking my cow twice a day and gathering the daily dose of freshly laid eggs. I don't mean that we shouldn't strive to live a fulfilled life. BUT that it is NOT OUR PURPOSE. That would be too selfish. And that is the exact opposite of what Jesus demonstrated for us. His was a life of complete sacrifice, always giving. I do believe that is the purpose for every single person. Live to Give. No one can make it alone. We thrive in community and support and shared love. From romance to childbirth and Anam Cara (soul friends). In that moment I saw that I needed to sacrifice my life... and here was the kicker.... even IF it meant only for ONE person. Just one. IF I had to spend the rest of my life caring for someone who couldn't care for himself. Many people have to give up their life for lots of lives. My mom lives for the work she does in Egypt touching thousands of people. A firefighter goes to work ready to give up his life to save any number of people. Some are more glorious and heroic than others. But what about that quiet mother somewhere who is solely taking care of her grown child who will never leave the home? She feeds him, still changes his diapers, gives him his medication, bathes him, moves him from one position to another. I don't know her name. Neither do you. She has given up all of her life, for this one person. And maybe no one will recognize her sacrifice. And maybe no one will give her an award, or name a hospital after her. Maybe no one will even know to be inspired by her.

What if I was called to give up my life for one soul? Thankfully I know that I am not that lone woman right now. I have other children to spend my time blessing. I know that my life has been more than the sum of one person.... but what does the future hold? I must let go. I must let go of Africa, Europe, farmland, dancing, teaching, horses, writing, learning, retiring. Because only in letting go will I ever really be free. So many times in my life after I let go, that is when I see God bring it to fruition but the thing about letting go means you are okay even if it doesn't happen.

That was only profound (for me ) thought one.

By the time I came out of the woods and stopped at all the benches, John Michael and I were walking around the barn with the sun shining down on us. God spoke to me. We not only get to sacrifice our own lives.... we must give up that of our children. GASP! NNNNNNOOOOOOOOOO!!!!! I really don't want to! No, please no! Please let me be the one to control and protect them. I can't even fathom the thought of releasing them into the world someday let alone losing the reigns of their purpose in life. This is the reality even for people who don't believe in God. We know our time with our kids is borrowed and therefore precious. They will be their own persons, they will make their own choices and go their own ways. Even now I desperately wish I could force feed my son to eat only healthy foods, instead he chooses to go to bed hungry. I wish I could force my introverted daughter to tell me everything she is thinking, instead of waiting a week before I hear about her day. I wish I could make my son WAKE up to the body he has been put in, to force him to be curious of his world, instead he is happy to observe. But I knew when God spoke this to me, he was right. I hadn't let go of John Michael's future (or any of my babies). And I needed to. I need to everyday. I have been blessed that their life has been passed through me. God used me as a place to create their physical bodies and they will move on past where I can go.

Thankfully I am reminded God's intentions are beautiful. and good.... even when things seem bad.

Only God can follow my teenage daughter on all her dates. Only God can guide my children in their steps. Only God watches my children every second that they sleep. Only God. It is a horse pill to swallow, but it is good. And really it feels better once you let go. Even if you do have to do it everyday.