I need help!

we all do actually.

I heard on the radio recently that there are three kinds of people. People who are going through hard time, people who have just come out of a hard time, and people who are headed into a hard time. Now more than ever before I feel connected to humanity through suffering. Before this year I knew about rough patches, dry seasons, and sadness... but never had I known first hand how the heart can hurt.

I do believe that the people who are not currently the ones who are suffering have a big responsibilty to care for those who are.

Even though of course I wish I could rewrite the story of this past year I do appreciate that I feel more connected to humanity now more than ever.
In Maya Angelou's words:

"Each one of us has lived through some devastation, some loneliness, some weather superstorm or spiritual superstorm, when we look at each other we must say, I understand. I understand how you feel because I have been there myself. We must support each other and empathize with each other because each of us is more alike than we are unalike."


So many times people have asked what they could do to help us and I have continually said whatever is on your heart. We had so many people bring meals, healthy snacks, bags of groceries, babysitters, financial gifts, housecleaners, prayer warriors, listening ears, comforting shoulders, sustained hugs. If you feel like you are "in a good place." If you feel happy with your life... pour into those around you who are not.
I have only recently opened my eyes to how I was not there for my sister when she was going through chemotherapy. I couldn't see past my own struggles of the time to imagine how I could be of help to her, specifically when she was not asking for help. Here's the deal. Most people DON'T ASK, whether they realize it or not they are begging internally. Perhaps they don't ask because they are too prideful. You know it's true. We all have pride. We don't want to break down and let people see us at our most vulnerable. Perhaps they don't feel worthy enough. Like they have always had to be the one helping someone else and don't know what it is like to even be on the recieving end. Fortunately in my case, I like telling people I need help. I blame it on being the youngest in my family and marrying the oldest in his family. I have spent a lot of years being babied and expecting people to help me. Thankfully my children have stripped me of a lot of my selfishness so I know how to work for others 24/7.
The best way to know how to help someone is to just imagine it was you. In what ways do you feel loved? In what ways do you become easily overwhelmed? Those are the ways that you can show your support and care for someone in need.
 I personally love handwritten notes. I have ever since I could write. Too many people have told me they were thinking about me during particular times only they didn't come to tell me until after the fact.. you should tell them right then. send a note in the mail, leave them a long loving voicemail. Scripture, poems, tips that have helped you through a similar struggle. It is wrong to keep quiet.

Just like with babies, there is no such thing as being spoiled with too much love. Wouldn't it be better to not have enough room in the deep freeze for all the meals, to have to ask visitors to come back, catch up on the texts of encouragement at the end of the day, versus struggling to get dinner made at a decent hour, have no one at your door to hug you, no one sending you messages of love. In this case it ISN'T the thought that counts. When something difficult happens to someone in your life regardless of how close you are to them or how well you know the details you should do something.

I often have topics on my heart that I stir around for weeks before hashing it all out on here but I felt the need to finally publish this because roles have been reversed. I was just starting to feel the Light shining from within again. Feeling like I have had a reason to sing a song while shopping, or run up the stairs, skip around with the kids. That feeling like I can say I am happy without a tag on the end like "except for...".
The day of the tragedy in Newtown I came to the realization that if that had been me I wouldn't want people to get angry and talk about the sick people in the world or immediately talk about politics I would want people to cry. Weep with me, I would say. Don't say this could have happened to anyone so we are lucky it wasn't us. whew, close one. I can't imagine. No, don't hug your kids extra tight because you slipped through the clutches of this horror. Hug them because I can't hug mine, I'd say.
You know, it is truly the difference between sympathy and empathy. Raise your hand if you like sympathy? Oh poor you, you have cancer. Bummer, your dog just died. That sucks you can't get pregnant.
hmmm seems to me that sentiment almost provokes a slap.
Here is another tidbit, when you tell someone to their face that you appreciate something about your life more because of their suffering, it hurts. So don't do that. By all means think it if you wish. But telling me that you appreciate your baby and the things they can do because my son has not done them yet is inappropriate. It would be like walking up to a parapalegic and saying I am so thankful I can walk. This probably sounds like something you wouldn't do but it slips out much more often than you think.

You know when Jesus said it is better to give than to recieve? It actually feels better. I would rather have so much breastmilk that I had to give it away than have to be the one receiving hundreds of feedings worth of liquid gold. It's humbling. What do you say for something so priceless... thanks?
There are times in our lives when we can't see beyond the walls of our own home, beyond our own sorrows. And I think that is appropriate. It is too much to take on the cares of the world. But when the tables turn, grab the opportunity to be generous in spirit. In gifts of love and time.

I have a new friend who has lost a precious little love this week. I have decided the  best thing I can do for her is to write her letter. A letter filled with ideas of how to still take care of herself. A letter reminding her that she will be happy again. That good times are still ahead. " I don't know what to say" as so many of us don't when something tragic happens. But I am going to try. I am going to tell her what I wish someone had told me. Even though our pain is different. I don't claim to know what it feels like to lose a child. But I know loss. And I know that any kind of suffering is suffering. If only the people who have been hurt the exact same way could help each other we would all be very lonely.

So please if you are hurting, ask for help. Tell people what to do. Value yourself.
If you are loving life, help someone. Don't wait till they ask. Just decide how you want to be a blessing. That is why you are in the loving life place right now.

After all "you will reap, what you sow."

My new birthmark

So yes, I did get a tattoo, and all controversary of ink aside, it is very meaningful to me. 
A friend told me that people get tattoos for all sorts of reasons. I think people should also get tattoos for healing. Hear me out...

Let's start with mine. 
People say the best thing special needs children give is the idea of living in the moment. Being grateful for what you have right now. Everyone tells me "take it one day at a time." uhhh sometimes I can only take it fifteen minutes at a time. Literally. I stop looking any further than just fifteen minutes. 
The Greeks had two words for time: Chronos and Kairos. Chronos (chronological) time is schedules, beginning, middle, end. It's THE CLOCK!  Kairos is this present moment. Divine Opportunity. We can't go back in time or skip a chapter ahead. In a sense there is no yesterday, there is no tomorrow. Our reality could change at anytime. THIS is all you have. This moment. It is easy to lose sight of this when we end up doing the same thing moment after moment, day after day, week after to week. Yes diapers do need to be change AGAIN. Yes your children are hungry AGAIN ( I swear my best days are the days my children are willing to eat anything, better yet get it for themselves :). But there are realities where all that is gone in a matter of moments. Houses burn up, children are kidnapped, people get in accidents. I am not trying to be miss doomsday but just reminding myself of how quickly our lives can change. 
I have repeatedly said that the hardest part of our situation is having such an unknown future. The spectrum is so huge for what the possibilities could be. I often told myself in the early days after John Michael's diagnosis that if he turns out doing and being so much more than we imagined I would have wished I didn't worry so much when he was baby. Same as IF our future is much more trying in the future than it is right now.... I would have wished I enjoyed the baby stage without the worry. So there is the lesson. Enjoy the moment, it is all you have.
I am living a life I never planned on living. I honestly can't remember what I thought about special needs babies or what it must be like for their parents before being in this place myself. I probably didn't think about it on purpose. It was just too much. I don't really understand how there are still people who haven't fathomed what this is doing to my heart who are confused at why I feel like darkness is trying to close in on me. This IS MY SON. He means more to me than my own life. He may appear to have always been this way to you. But he was in my body when he was invisible to your eyes. We were one person effected by life together. So what happens to him happens to me. We are going through this as one. He is probably on the better side of it though since he has never known life to be different. He is having a blast right now actually as his sister holds him in her arms. 
Since my life has thrust me into a different person, one I didn't know existed. I have a new birthmark. I have several actual birthmarks in unusual places when I was born as Michelle Marie Earle. Now as mother to John Michael, a new one has appeared. Behind my knee it says kairos (it looks more like KAIPOS actually for the greek letters). I am not posting a picture because again it wasn't about what it looked like. I want to be branded with this presenet moment. Anytime I wish I could go back or forward or change to a completely different life (the life I thought I could choose to make happen) I look at my birthmark.
I am not worried about not liking in when my skin is old and saggy because I don't believe I chose it. I was born into it. (humor me I know I ACTUALLY did choose to get it and suffer through the 3 minutes... I hate needles. give me all my crazy long births, it was better than having a knife jab to my bone!) I am not worried about the way it will look when I am dressed nice anymore than I would think about what my dress looks like with a scar. It's a part of you. It isn't an accessory.
My friends that went with me decided we should invent a spa like tattoo parlor where you have to go through a few sessions of embracing the changes that have happened in your life before getting your tattoo of symbolism. Maybe you survived cancer, lost a loved one etc. I was actually bawling on the way because of what it meant for me. Then you embrace the person you are now, whether you are there by choice or not.

a sacred act

pumping sucks. quite literally.
John Michael's feeding journey has been just that, a journey. One that we are no where near the end of.

Since my son was three pounds smaller than my first two children he was much sleepier and for the first two weeks of his life would hardly nurse and never very well. He kept losing weight and by the time we were admitted to the hospital he was under five pounds. Looking back, I think he was eating just enough to not starve himself. I used to look at small babies and think why didn't your mother eat more protein when she carried you. Why isn't she letting you live at the breast? Let me tell you, small babies are hard to nurse. They are hard to hold; hard to smoosh up against a full breast. Right away the attending physicians in the hospital encouraged us to put in the NG tube which if you are as unfamiliar as I was at the time, it is the tube that runs down the nose to the stomach. They kept telling me it was the best option for getting him to start gaining weight and I could still nurse him as much as he wanted and we wouldn't have to go through nipple confusion. At this point we had tried feeding him by syringe and bottles in addition to nursing but it was still a very small amount that we were able to give him before he would tire out. I kept putting it off because I hated the thought of a tube going down his nose unless it was a last resort. Keep in mind this was all before we had any idea about the virus or brain injury so I had no reason to suspect he wouldn't just catch on to nurse in no time. As they continued to run tests to find out why his platelets were low we kept stalling in hopes that he would magically nurse. One of my most treasured memories is when we went down for the CT scan, he had latched on and nursed for a straight HOUR. I wasn't about to take him off for anything, so we walked through the hospital attached to the iv and I kept saying how wonderful he was doing. I could tell the staff was like " uhh babies don't nurse for an hour he is probably just sucking" but I knew otherwise.... my babies can nurse for an hour! I will never forget how it felt when they weighed him the next day and he had gained an ounce. A FREAKING OUNCE! One ounce had never been such a big deal. but it was SUCH A BIG DEAL. However he was still hardly nursing when the flood of doctors came in to tell us the results of the CT that afternoon. Right before they spoke I told them we should go ahead with the NG tube. Of course then the walls came tumbling down and I cried an ocean for the next few days (but that is worth another post of it's own). When they told us that he may never be able to eat I just cried and cried and told Clay "I HAVE to be able to breastfeed him,.... I. HAVE. TO." He gained an ounce per day for the next several weeks, until after three weeks of the tube feedings he started just screaming all the time and I knew something was wrong. After church one Sunday he pulled the tube out of his nose completely and stopped crying instantly. I suspect it was giving him heartburn since that is what adults complain of when they have to use one. I couldn't bear to put it back in again so I thought I would do anything if he could just take a bottle. So we very carefully made the decision to leave it out and see if he gained over the next three days. 

The hospital staff had told us that some babies don't have the energy or ability to feed themselves (meaning they need a stomach tube for their whole life, which would have been the path after the NG tube). I had no idea if he was capable of taking a bottle well enough to gain but not spend too much energy in the process. It was stressful to say the least. It would take him an hour and a half to drink two ounces! I just prepared myself that when we weighed him again he would have lost and we'd have to reinsert the tube. But I know it was through intercessory that though it was so much work for him he gained weight!! Glory to GOD! I still thank Him for this true miracle. Think about it logically. It isn't very likely that you could go from not having to work for your food (for we know sucking is true work for a baby) to working for all of it. It is miraculous. Still when I go to the neurologist or the speech therapist looks at him, they are amazed at how well he keeps his weight up. He is the size of a typical 6 month old in his height and weight. I do wish that just someone would recognize he is thriving because I am giving him my milk. Thought I know they all think I am just crazy for going to all this trouble, I know what the research shows! Babies who are breastfed often have as much as 10 IQ points higher than those who are not. To a brain injured child that could be the world of a difference.

pumping sucks. quite literally.

John Michael's "feeding" journey has been just that. A JOURNEY. and I feel the need heavily to process it out on here even though I am so very far from being done with this journey.

I have a love hate relationship with my pump. Mostly hate. But I am so blessed to be able to give him MY milk. It took several weeks of pumping before I had enough supply to give him only my milk. I am beyond grateful for the donated breastmilk of close friends, but I did bawl my eyes out the two times he had to have formula. I knew I had to stop being a purist and realize it was better to give him that than to starve him. It is good for me to know that he never had "nipple confusion" where they just prefer the way of a bottle, but that he truly hasn't had the fine motor skills it takes to latch at the breast.

I have felt for a long time that breastfeeding is really a sacred act. One of the only things left in today's modern times that hasn't changed. At all. Mary breastfed Jesus the same way babies breastfeed today... in momma's loving arms, skin to skin, with milk from one body made just for her baby. 
I had a friend tell me that it was still really special to give John Michael my milk even if it was a roundabout way. She likened it to drinking pure spring water from the earth. That when we drink the earths water we become part of the earth and when our babies drink our milk they are still a part of us. Immediately I thought of the Eucharist or Communion we take at the Lord's Table. When we receive His body and blood we become one with Him.

I still long to hold my baby at my breast and give him that part of me without having to take the long road. It can be painful to watch nursing mothers coddle their nurslings at the breast. I have wept that loss. But that isn't our path. At least not yet. I don't think I will ever be able to let go of the hope that maybe just maybe someday he will magically latch on. I still bring him to the breast when he is already happy and in a playful mood and even in those few seconds or minutes it does wonders for my heart (and hormones I am sure).

pumping still sucks. every day. 5-8 times a day, going on six months now, but I can't imagine any other way. I really don't know how long I will hold out, but I can't stop now. Not just yet. Sometimes when I channel my Kairos time I tell my self there was no yesterday, there is no tomorrow. I have never pumped before, I will never pump again. Just now. Just this once. (sound like birth anyone?)

Living with Intention

The word intention always takes me back to my college ballet days. More specifically, the classes I took from Ms Denise Celestin. (She's divine by the way. She loves purple and teaches Russian technique. Enough said.) She repeatedly reminded us to make every step with intention. Nothing is placed without purpose. Yes, this is incredibly difficult. Mindfullness, vigilance, awareness, eyes always open. You can't have a mindless moment.

Sounds daunting, but actually ever since then I have loved the word. It has been a slow process, but this year more than before I have sought to LIVE WITH INTENTION.

As a  parent with a special needs baby I realize how you have to always be mindful, always vigilant. We are consistently aware of his body positioning in the way we hold him making sure the tight muscles are relaxed that he is physically working on some part of his body (visualization, head control, leg kicks) even at the same time as going about our daily duties, being present with our children, and just enjoying him as a baby.

As much as I believe in reason for the way things happen to us and why, I also believe in the freedom to make those choices.
Even when I repeatedly ate fast food during my pregnancy I did it by choice. on purpose. sounds awful doesn't it? It wasn't though because it was just what I had to do in the moment. You know what I mean... you spent way too much time in walmart (the ultimate time sucker) and now you are starving... popcorn chicken it is! Whenever I feel like I am struggling to meet everyone's needs and that inevitably someone is falling short I remind myself what my beloved midwife and friend has repeatedly told me "you do what you can with what you have." I accept that I can't be the best chef, maid, therapist, doctor and best friend to my kids all the time.

This brings me to a virus. Something that happened to my family because we don't live in a sterile world. The number one prevention for cmv is handwashing. I had never been an avid handwasher or germaphobe. Every story I have read from parents with cmv babies says the same thing.... "I had never heard of cmv before". There are more babies born with cmv than downs syndrome we just don't know it because 80% of the babies don't show any signs of it and go on to live "normal" lives. The most common transfer of the virus is through fluids (snot, sweat, tears etc ) particularly sexual relations or children's urine. I am a dance teacher to little kids, my husband is a public school teacher, my daughter was in preschool and my toddler was potty learning during my pregnancy. There are a million different ways that I (and my whole family ) would have contracted the virus without even knowing it. There are two things to learn here 1. WASH YOUR HANDS. I don't look back and think why I didn't I wash my hands ALL THE TIME....(actually I often think what if the person I had contracted it from washed their hands too?) just all of us all the time WAAAASHHHH. not just for cmv for everything!! I am still not a germaphobe. I still don't wash my hands every single time I should but this has made me believe in  the rare percentage. Someone could be talking about anything and say "ya but the percentage is so small".... still to that one person it is very real. I haven't spent a lot of time in the "what if" place* and that brings me to number 2. If I went back I wouldn't have done anything differently... intention. I knew letting my son run around our house naked was a sanitary issue but it was also the way we were able to communicate how we as humans eliminate our waste. I wouldn't go back in time and not put my daughter in preschool, which she loved and gave me the much needed naptime with my toddler. I wouldn't go back and refuse every runny nosed child that came to the studio ( I wouldn't have any students! :). I would do everything the same, because I did it with intention.

Making choices with mindfullness and not roaming around in mindlessness...

**by the way the what if place is a wretched dark hole... don't go there. EVER. The second you think WHAT IF even though you want to start thinking about the other possible outcomes just GO SOMEWHERE ELSE!

He is ever before my eyes

I have been clinging to the vision that God gave me at the very beginning of my labor with John Michael. In fact I wasn't even sure what was going on or how it could possibly be labor ( I threw up for the first twelve hours during the contractions). As I sit soaking in the bath I had this image that Christ was kneeling beside me on the bathroom floor pouring water on my back. I immediately knew it wasn't my own thought because I wouldn't picture Jesus the way I had seen Him and I never would have put Him on my bathroom floor! But in that moment I knew what He was showing me; that He was with me for the long hall. It brings tears to my eyes every time I think of it. After a three day labor I thought that was why He had given me that image.... indeed it has served a much bigger purpose since then. The birth was nothing in comparison to the road, the uncommon road, we would have to travel.

I have been blessed by the words from Psalm 108:

"Dont forget His Love...

who forgives all our sins,

who heals all our diseases,

who redeems our life from the pit

and who crowns you with His love."

I have had so many thoughts and not enough time to process them, I wanted to start this blog to help me with that. The events that occurred around John Michael's birth, looking back, had so much purpose, so I will be mentioning it frequently. Instead of one long birth story it will be woven in. 

The future is so uncertain and that I am not so special that I am the only one who can say that. All of our earthly futures are completely uncertain. I repeatedly tell myself not to compare but the only way I have been able to do that is see that we are on our own road. Unlike any of my friends' or their children's. And that doesn't mean I am alone. My family is walking it with me as best they can, although there will always be more heartache for the mother than anyone else will know. This isn't a sob story. This is already a victorious miracle! We have a very good life and we are thankful.

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on a side note: I am usually only able to type one handed and I don't proofread much... so be prepared.