What’s in a name?

I had my first seizure when I was 8 weeks pregnant with Naomi. I had terrible morning sickness which caused an underlying condition to bring on seizures without warning. After seeing several neurologists I had no choice but to give up my drivers license until they could get the problem under control.

I was overwhelmed with the notion of having an unexpected pregnancy, caring for a house, a husband and 3 little girls who needed me, all while being sick and under house arrest.
There were some very low moments during that time, and during one of the more notable ones my mom and my Aunt stopped by to help. I will always remember my aunt taking me into her arms, and while she hugged me close I finally let the sobs out.
What she did next would alter how I chose to live out the following 10 years of my life.
She calmly whispered the name of Jesus into my ear, over and over again.

That might sound crazy to many people, but you don’t know my Aunt BettyAnn; she is full of grace and Godliness, she is meek and gentle and truly loves her Lord.
That day, standing in my kitchen, the overwhelming fear and despair turned to peace that surpassed all understanding and I was from that moment on, armed with a name so powerful that it would shatter the barrier between two worlds.

“What’s in a name? That which we call a rose by any other name would still smell as sweet”.  I loved that line from Romeo and Juliet when I was in High School—but over the years I have come to realize that those words are false on many levels. There is incredible power attached to every single person’s name; what people think of you, your reputation, your good deeds as well as your bad, are all wrapped around your name. Every time your name is spoken the essence of who you are perceived to be swirls around the room and lands on each person who hears it.  Your name has the ability to bring anger, fear, judgement, humiliation, or calm, security, pride, joy…maybe even insight war or peace . Facebook has proven that to be true in the last few months alone.

A friend sent me a link to a song this morning; I don’t know if she realized how much emotion that song held for me, but when I opened it, not knowing what it was, I was immediately taken back to a time long ago, when one name meant the difference between life and death for me:

I was sitting in my reclining chair,  I had my back against the cushions and one leg draped over the arm,  I twisted myself into a position that would mold Naomi’s body into the most comfortable place she could find. Both of her hips were dislocated, her shoulders slid in and out of their socket and she was unable to hold her head up by herself… but when my husband lay her onto my contorted body in that chair I could instantly feel her body relax. We would sit there for hours—my house work didn’t matter, no cooking was necessary; my sole job was to ease her pain and make her know that I was there and everything was going to be okay. Sometimes I would read to her, sometimes we would watch animal planet or the Ellen show, but when the pain would find a way to break through, the only way I found to comfort her was to sing. I would lay my cheek against the top of her head and sing: “Jesus, Jesus, Jesus… there’s just something about that name. Master, Savior, Jesus, like a fragrance after the rain…”  The same name that my aunt whispered in my ear when I was pregnant with Naomi, became the song I sang to ease her pain and fears.

After 5 weeks in the hospital the doctors let us bring her home. The EMT’s took her out of the back of the ambulance on the stretcher and brought her directly into our family room. They waited patiently while I settled into that recliner and found just the perfect position, and Leon gently picked her up and layed her into my arms for one last time. I didn’t wait long at all before I began singing: “Jesus, Jesus, Jesus… there’s just something about that name… Master, Savior, Jesus, like a fragrance after the rain…” We had many hours with her that night, sharing stories, singing, crying, laughing, but the sweetest of those moments for me was spent snuggled up holding my daughter and whispering the name of Jesus into her ear.
At midnight a smile crept onto her face and I knew that she had seen Him at last.
What does that mean to me now, after she’s gone? It’s a great illustration and reminder to me of how God has given us little gifts to help us get through this world that is filled with pain and fear and confusion. One of those gifts is the Bible; in it He tells us how to live in love, and reminds us that in this world we will have tribulation, but not to lose heart because He sent Jesus to be the bridge that  closes the gap between this world and heaven. He did all the work; we just have to believe and accept that gift.
So, What’s in a name? Oh, pretty much everything.

https://www.bing.com/videos/search?q=youtube+there+is+something+about+that+name&qs=SC&cvid=d4d25bc0b9784eb9825dcaad2c020f62&pq=you+tube+there+is+something&cc=US&setlang=en-US&nclid=1E1D68D91CB695B4FCDC8DC3485A2ECD&ts=1507150838096&ru=%2fsearch%3fq%3dyoutube%2bthere%2bis%2bsomething%2babout%2bthat%2bname%26form%3dWNSGPH%26qs%3dSC%26cvid%3dd4d25bc0b9784eb9825dcaad2c020f62%26pq%3dyou%2btube%2bthere%2bis%2bsomething%26cc%3dUS%26setlang%3den-US%26nclid%3d1E1D68D91CB695B4FCDC8DC3485A2ECD%26ts%3d1507150838096%26nclidts%3d1507150838%26tsms%3d096&view=detail&mmscn=vwrc&mid=416FD960D154039634DB416FD960D154039634DB&FORM=WRVORC

 

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Time and Time Again

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This time I know what’s happening;  unlike the past 4 times, I can see it and recognize it for what it is. But it doesn’t make it any easier to navigate through.
I just got off the phone with the local car wash; making an appointment to detail my car. This morning I went through my refrigerator throwing out things that I don’t want in there anymore.   Last night I layed in bed and stared at my curtains deciding that I need to change them, to what I don’t know; ANY other color, design, texture than they are right now.    I’m tearing apart my house room by room deciding what I can change, how I can make it look better, smell better, feel better.      And that’s it…. I remember now:  I want to feel better.             In between doing all these things around my home and car, I go and sit in the cemetery staring at the stone that holds my daughters picture. I don’t even cry while I sit there, I just stare and think about nothing, but her.   Sometimes about her last days, sometimes about what it felt like to hold her, sometimes scrutinizing things I wish I had done to allow me a few more days or hours with her. But it all ends the same: me getting in my empty car and driving away without her.
It’s not even July yet, and these feelings of anguish have already gotten ahold of me, nestled under my skin and made me itch to climb out of it. How do you describe grief to someone who has not yet felt it? You can’t. And to those who have felt it? I don’t even need words. Just a look into my eyes and they probably can put their finger directly on the place where it hurts the most.
Last night I was on facebook looking at the pictures another momma with a broken heart posted of her precious daughter as she prepared to say goodbye to her. When I looked at the picture I know I was supposed to be looking at the face of the beautiful young girl lying in the hospital bed, but instead my eyes were drawn to the face that was drawing in every possible second she had left with her child.   I stared at her and I felt her pain. I remembered every feeling that I had swirling around my heart as I sat in the same position soaking in my own child.     There is no way to describe it– and yet, here I sit trying to use words where they will always be empty, needlessly trying to make sense of something that will always be my exhausting companion.
Her face; Rebecca’s face, holds the expression to what words cannot explain—the feelings that a grieving mom carry’s on the day her child left her, and which will return with the same vengeance at the approach of every anniversary and milestone. Each passing day that I move closer to that date in July brings me a step further away from Naomi as I wish she was. Here.
And so I flail about in this sea of sadness; trying to grab onto anything that will give me a moment of relief.   The distraction of redecorating,   the superficial thrill of a shiny new bauble that I say I will buy in her memory,  cleaning out the dust in my house which remind me how cluttered and discombobulated my life feels with one of my children missing from it.
And when I need to stop fighting it, I’ll take a break. I will get into my newly cleaned car and once again drive to the place where I can sit and fight no longer. I’ll water the flowers, and pick the occasional weed from her garden—I’ll brush the pollen off her stone and clean the glass that covers her sweet little face and then, at last, I’ll just be still with my memories.
And Tomorrow? Well, tomorrow I’ll start fresh.

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Christmas in Connecticut

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(Throw back photo of the Christmas we spent in the ICU–surprisingly one of the kids favorite memories of all time)

I just finished writing a blog about how grateful I was for the gift of laughter this Christmas. I had a few good days and started thinking that maybe the 4th Christmas without Naomi was going to be a little less dreadful than the first ones, and I got comfortable with that thought.

I had the flu when I was 16; I have never been so sick in my whole life. For almost a full week I was in bed barely able to lift my head; so when my friends asked me if I wanted to go to a basketball game with them the day after my fever broke I was itching to go. I thought I felt better, but suffice it to say I wasn’t ready. I was so tired of feeling miserable that I pushed my body to do something it wasn’t ready to and ended up making myself feel worse. I got home from the game and climbed back in bed completely set back and frustrated.

Christmas eve I was ahead of schedule. I’m usually running around doing last minute shopping and wrapping, or baking just one more thing—so when I had the extra time on my hands I wasn’t quite sure what to do with it. I could feel myself getting desperate to get out, so Mary and I decided to go grab a cup of coffee. As we pulled into the parking lot the song “I’ll be home for Christmas” came on the radio. I felt a lump form in my throat, so I quickly turned off the radio and shook it off. Mary noticed my mood shift and thoughtfully said: “ya know what? Let’s go get our nails done; that will make you feel better”. I perked up; I had been asking her to go with me for the past few hours, but she didn’t want to. She was tossing me a bone, but I wasn’t too proud to accept it!

When we walked into the nail salon there was no one else there. The 2 ladies who worked there hopped up and told us to pick a color. They sat us next to each other and started to work on our nails. Mary was right, this was good. A few minutes later I heard the salon door open and a very well dressed woman walked in with her daughter and announced that she was there for a manicure. The woman was obviously wealthy; her appearance was impressive and she carried herself with excessive confidence. The lady working on my nails initially looked torn, but quickly made her decision; she stood up and told me that someone else would be along shortly to finish my nails but she was going to take care of this customer instead. I was shocked; not just that the employee was choosing to walk away from me, but that the lady who walked in was actually going to let this happen. She shrugged off her expensive coat without hesitation, took her large sparkling rings off without so much as glancing over at me and handed over her nails to be polished. I looked at Mary with my mouth hanging open; I was mad and not about to keep it a secret, but my daughter looked back at me pleading with her eyes not to make a scene. I felt small, insignificant, and suddenly very ashamed of my appearance. Up until that point I was comfortable in my baggy jeans and oversized red sweater. My boots didn’t have too many scuffs and my messy curls were just the look of a lazy Saturday afternoon. Now that I was held up to the woman beside me, I was left lacking and I became aware of my every flaw.

Just like that, my anger turned to sadness. I no longer felt righteous indignation; I felt shame and sorrow. I sat quietly beside Mary as she finished having her nails painted and then quickly stood up to leave. “She must wait to dry her nails” the small lady advised me, “they can dry in the car” I replied while snatching up my and her belongings. We barely made it out of the salon before the tears came. Poor Mary sat next to me as we drove home not sure of how to console me. She wasn’t even sure which part of the day I was crying about, and to be honest, neither did I. The tears started because of the salon experience, but after the first 30 minutes they became about having yet another Christmas without my daughter.
I cried all night, and every time I thought I had pulled myself together, the tears would come again. They were slow and steady. They only came faster when I sat in the church pew and listened to the speaker talk about missing loved ones on this special time of year.
After midnight mass Leon and I drove home in silence. It was cold and rainy and I kept my head pressed against the window; I noticed our street sign as the car drove past it and instantly knew where he was taking me.

As we approached the cemetery I finally stopped fighting it. Once I let it, the anguish bubbled up and out of me like a bottle of soda that had been well shaken before opened. I walked quickly to the stone and stared at the picture of my beautiful little girl; the sadness that I had been trying to outrun for the last 4 weeks finally caught up with me. I choked out a sob and bent in half, holding my stomach. I was standing in the bitter cold on Christmas eve, in front of the headstone of a 9 year old little girl who should be home in her bed dreaming of the fun things she’d find under the Christmas tree in the morning. This felt wrong, so very wrong. I stood up and looked around me at all of the other stones, many with Christmas tree’s and lights glowing in the silent dark expanse of land. How many other people were trying to outrun their pain on this Christmas night?

The next morning I woke up ready to enjoy Christmas with the rest of my family. I was still hurting, but I also felt cleansed. I realized that I had been putting a lot of pressure on myself to be “better”. I loved how it felt to get a taste of normalcy a few weeks ago and I longed for that lightness again, but it was just that, a taste; it wasn’t meant to be every day.

I usually like to wrap up my blogs with some positive spin or reflection on what I’m learning through this journey, but all I can come up with this time is the expression: “It is what it is”. I want something I can’t have, not just my daughter back, but the ease of living that came with having a complete family. I have been told so many times that it will get easier that for a minute I believed it to be true. Truth is, “easier” is not a word that should be used when forecasting what grief will turn into, it’s not a word that should be used in conjunction with the word grief at all. It will be different—mostly cloudy but with a chance of sun. In Connecticut, they say if you don’t like the weather, just wait a minute.

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His Mercies are new every Morning.

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My story is old news at this point. Three and a half years later I can walk into a room of people and know that the first thing they see about me is not my grief, not because it’s not there, but because my body has adjusted to functioning without the tell tale signs of the sadness I carry. A grieving parent will go through their every day with reminders of their loved one every where they look.
When I wake up in the morning I pass a little girls empty bed. I walk into the kitchen and see her chair at the breakfast table still vacant. Retrieving my coat from the closet I feel a stab of pain because her tiny pink North Face hangs exactly where I left it years ago. I turn my head to back down my driveway and always notice the empty car seat where she once sat. This is all before lunch time; there are a hundred other reminders that continue to poke at me as I go about my day. To say my story is old news is accurate, to say my grief is old news would be grossly incorrect.

Last week I decided that it was time that I put Naomi’s clothes away. It was a painful process of picking each article of clothing out of the hamper and moving it into the soapy water. I was wrong in thinking that was the hard part. The hard part came next when all of the items were dried and it was time to sort and fold them. The final step was putting the cleaned out basket back in the corner of her room, and that was the hardest part of all because it too was now empty.

I wonder if the other grieving moms and dads find it hard to breath as often as I do? At times I’ll find myself holding my breath as if I’m under water. Other times I need to draw it in deeply as if I’ve been holding my breath too long. Once I exhale I usually say the words: “Lord Have Mercy”. What was once an expression of frustration, has now become a genuine prayer because I need God’s merciful strength to keep moving.

I recently discovered how much I appreciate the verse in Lamentations: “His Mercies are new every Morning“. It is packed with promises for me. God’s mercy is full of a Father’s Love, and with that comes so many rich blessings that are laid out fresh for me each morning. His strength, His comfort, His peace, His patience, His kindness, His understanding.
Even years after losing my daughter every move I make is weighed down by missing her. Most parents who have lost children will confirm that there is rarely a minute that goes by when their child’s absence is not a pressing pain on their heart. We go through daily routines like everyone else, and it would take a pointed question for us to reveal how exhausting it is to do two things at once; work and grieve, clean and grieve, shop and grieve, worship and grieve, even laugh and grieve. Every morning I need a fresh supply of mercy.

I have long ago stopped asking God why? I realized it doesn’t really matter why; would there ever be any reason that could cause a mothers grief to be extinguished? So, all that is left for me to do is rest in His merciful assurance that I will one day be in Heaven with her, where there is no more sadness, no more sickness, no more pain, and certainly no more emptiness.

Yet I still dare to Hope
When I remember this:
The faithful love of the Lord never ends!
His Mercies never cease.
Great Is His faithfulness;
His mercies begin afresh every morning.
I say to myself: the Lord is my inheritance;
Therefore I will hope in Him.
Lamentations 3:21-24

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The backpack

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I can hardly believe it’s been 3 days since I was sitting in a another country having dinner with the families and teammates of the United States Women’s National Soccer Team, directly after their win over Germany in the World Cup. As each player trickled in, the entire room would erupt into applause, regardless of what their role was on the team, that night the sound was the same. I felt full of pride as my favorite player made her way through the tables and plopped her backpack on the chair next to mine. I couldn’t help but notice the oversized goalkeeper gloves sticking out of the mouth of her bag, her name stitched across the Velcro: “Naeher”, and I wondered what else she had in there.

I thought I was going to Canada to support my cousin who was living out her dream of playing soccer on the national team, but what ended up happening was a very different thing. She reminded me about perseverance.

What many people don’t know about Alyssa and I, is that it was she and I together who came up with the word: “Persevere” and chose it to be the mantra of our family as we battled against my youngest daughters illness.
Shortly after that we had wrist bands with that word embossed across them, and we all wore them in solidarity. Because you aren’t allowed to wear jewelry on the field, Alyssa would often stuff her wrist band in her shoe or hide it somewhere else on her body, refusing to take any kind of break from her support of Naomi. Occasionally, when I would see a close up of her on tv, I would be so encouraged to see that word peeking out from under her gloves, written in sharpy across her wrist.
Alyssa became my hero when on one visit home she lifted her shirt slightly to the side and with a smile showed me her first and only tattoo: our word Persevere, permanently printed on her body.

Monday, July 6, will mark 3 years since Naomi lost her fight to Niemann-Pick Disease and left us. It has not gotten any easier for me, and I can feel my body fighting despair as the date quite literally closes in on me. There was something cathartic about sitting with Alyssa after her game and taking a few quiet moments to talk about her journey. As I sat across from her, and remembered the young girl who helped me define Perseverance, I was able to see how far she had come, probably easier than she could because she is walking in it right now. She was driven and highly motivated, she sacrificed time away from her family and friends, she missed countless Thanksgivings and skyped in on many Christmases. She trained through pain, and played through injuries. She did not come to this place in her career without a very keen sense of where she wanted to go and pushing herself to move forward at all cost.

Since losing Naomi I have had the opportunity to meet countless other moms who have lost their children, it’s just what happens when you have something so unusual in common with other people. What surprises me however, is that there is nothing unusual about grief in general. Along with connecting to the moms, I have also found myself chatting with women who have suffered the biggest betrayal imaginable, families with broken relationships who desperately want to be mended, young girls who battle demons and fight depression, grandparents who sit in nursing homes waiting for their loved ones to visit, husbands taking care of wives with debilitating illness, people who have been confined to wheelchairs, children who feel abandoned by their parents, the list goes on. Everyone is on their own journey, and every single journey is full of blessings and disappointments, turmoil and happiness, losses and victories, ups and downs, backwards and forwards. My favorite verse right now is Hebrews 12:1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us. We’re all running the race a race together, it just looks different for each one of us.

Part of the flaw in my running pattern is that I tend to look over my shoulder a lot. I take a lot of steps forward, but then I look back to see what’s been left along my path. When I was forced to lay down Naomi, I found a very large rock and placed it in a backpack, and strapped it on my back. I don’t go anywhere without that backpack. I hold on to it like a child holds a security blanket, it is exhausting to run in a long distance marathon with a boulder strapped across my body. Occasionally, but not very often, I let a friend who might happen to come alongside me, hold the backpack for a few miles, just long enough for me to catch my breath, then I snatch it back and keep moving.
I believe there will come a day when I can lay that burden down, maybe it will be just a few miles from here, maybe it won’t be until I cross the finish line, I’m not sure, but it‘s my decision to make, and it‘s not now.
What I am sure of is that I am determined to press on, to stick to it, to be stubborn and refuse to give up, to hold on and to persevere in this journey, running alongside all of you.

PS: I know Alyssa, and all of American soccer fans passionately wants the US to take the gold medal in the finals next week, and I want that too. But win or lose Alyssa Naeher is already my hero. Thanks for running with me ‘Lyss.

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My (sometimes) grateful heart

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I’m sorry to admit that in the last 2 years I have not found it very natural to be thankful. As a matter of fact I feel sorry for myself more than I care to admit.

This morning as the alarm went off at 5 am, on thanksgiving, I was definitely NOT thankful, and I grumbled as I swung my legs over the side of my bed. I was mad that I had to get up so early and put the turkey in– annoyed that I would be up late cleaning up the house after having lots of family over and super disappointed that I would have to get up early the following morning to go to work while everyone else was sleeping in. (Yes, all those emotions in that one minute it took me to sit up, get my bathrobe on and walk towards the kitchen).

Then I flipped the light switch on so I could see my path clearly and I realized… wow, not everyone in the world has electricity. And I went into my refrigerator and pulled out the 25lb. turkey to cook, and I realized that there is enough food in there to feed a large village. I stood in my kitchen and looked around, the fire was burning hot in the wood stove, my children (including my grandson) were sleeping down the hall, and the snow was falling outside while we were all safe and warm inside.

I have very little to grumble about. As a matter of fact the things that I grumble about, are often the things that are the biggest blessings in my life. My job for example. I know for a fact that God pulled some strings to make that happen. I LOVE my job, I love the people I work with– it was literally a slap in Gods face that I would be annoyed to go to a place that I love, do the things I love to do, with the people I love doing them with– just because I had something different in mind. That’s what you call ungrateful.

So where is this all leading? Except to let you all know what a perfectly horrible human I can be?
It’s leading to the place where I had a Grinch size heart make over (most likely temporary) and I prayed, thanking God– actually praising Him– for the blessings in my life.

I walked back to my warm bed, climbed inside and pulled the covers up to my chin smiling that I was snatching another couple of hours of sleep before I had to get up again. I fell asleep thinking about all the things I was grateful for and I began to dream.
Usually when I dream it’s horrible. I can’t tell you how many times a week I dream about losing Naomi. I relive her passing over and over again and wake up with my pillow soaked in tears. I have been pleading with God for a “visit” from her, like so many other people talk about, one where it’s sweet rather than painful; and this morning, I got that.

I was sitting beside someone hazy, I couldn’t see who it was, but strangely I didn’t care. On the other side of me a hand reached and took a hold of mine. I looked to see who was grasping my hand and stroking it and there she was: I saw Naomi’s beautifully healthy face smiling at me. I could see her brown eyes sparkle as clearly as if she had actually been sitting next to my bed. There was no haze, no shadows, nothing hindering my perfect view of her cherub like face. She didn’t say anything to me, but we sat holding hands for several minutes. And then it was over. I woke up and knew this was the visit I had been waiting for. It was a gift, I won’t go as far as to say that God was “rewarding” me for my change in attitude this morning, because I don’t believe He works like that. But I wonder if maybe my sadness plays a big part in what I dream, and then the snow ball effect takes over. Which leads me to believe that the change in my thinking this morning had a snow ball effect all of it’s own.

At any rate, I had the most wonderful visit from my precious baby girl this morning, and regardless of how it came about, I am probably the most grateful woman in the world today. I’ll worry about tomorrow another time.

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Falling Behind

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I haven’t posted many blogs lately, mostly because I have not been true to what I had hoped to accomplish in my writing. In the beginning I wrote to help myself sort through my feelings, to put words to a pain that few people could understand. Then I found that others could relate to my words, and I began to share my experiences with the intention of letting those others know they weren’t alone in the intense, agonizing, and complex feelings that come with missing someone they loved. I wanted my writings to show a journey of healing, the upward steady climb of a steep hill. The goal: to reach the top, victorious over my inner struggles, fully happy, fully healed, fully alive.

For a while I could see it happening; I had moments of genuine, untainted joy, and I was glad that I could report some progress. I thought it might be good to possibly offer hope to the other parents who were in the earlier stages of their loss, that it might actually get a little easier to bare.
But then the season changed, the smell of fall in the air brought back so many memories that I could not stifle. I walk outside and am flooded with pictures in my mind of Naomi in her Halloween costume, or the sound of her infectious giggle when she fell into the leaf pile wrapped in her fathers arms. I had to pull the bounty of colorful spring flowers from Naomi’s gravesite and replant mums and fake pumpkins. The change was a reminder that time continues to march on without my daughter, and I backslid into depression.

Here is what you don’t ever (And I do mean ever) say to someone whose child died and is in a depressed state: “Don’t you think you should just finally accept it and move on?”

Hmmm, what exactly would that look like? I mean I know she’s gone, nothing I can do about that. I am out of bed, I am dressed, I am interacting with other humans in social ways, I am cooking for my family, I am working full time. There is nothing about the change that has come from losing Naomi that I am rebelling against, but it has left a hole in me that will not be filled, it causes fits of sadness, and occasional (private) out bursts of tears. I am yearning for even one more minute with my little girl. Please do not make me apologize for that just because my life, this life I did nothing to earn, makes you uncomfortable.

Pretending to be without this Naomi shaped sadness might make it easier on some, but it makes a hard situation nearly intolerable for me. It has been making me feel more isolated than I felt in the days just after I lost her. It also sends the message to my other daughters that they should internalize the raging waves of pain that come from missing their sister. It lies to the other moms who have lost children and think there is something wrong with them because they haven’t “recovered” from the blow of losing their own precious child. I cannot do it anymore.

I am sorry if I make you feel uncomfortable. I am sorry if you were hoping I would return to “normal” after these last 2 years, 3 months, 2 weeks and 2 days. But I am still hurting. Please don’t add to that by expecting more of me than I can give.

Here is what I ask of you:
Please let me talk about Naomi.
Please don’t be afraid to let me cry
Please don’t shy away from our friendship because I’m different– I need you more now than I did before.
Please don’t try to fix me. It’s something I have to do on my own.

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