Coffee and God

Life is relatively simple for me. I start my day with coffee and God and consult both throughout the day. It's a concoction that works wonders and can tackle all of life's burning questions with an elevated alertness and acuity. God and the coffee will have me on the ready for the curve ball that will inevitably come.  Life, once again, is thrown off kilter for our family. There are no firm answers and there are usually many questions that outweigh the reality of true answers. It is at that juncture where you go down swinging or you give it all you got and safely reach the bag.

So here I find myself, again. Who would have thought that during our (nearly) 15 years of marriage three of our children would find AI Dupont Children's hospital a temporary "home".  Seemingly we are on a 6 year interval of visits that require a visit to the PICU.  Thankfully the hospital has been redesigned and it doesn't look the same from our prior admissions. The change of scenery helped the girls and, in all honesty, Allan and me.  Yet, it's not enough to shake the weight that there were two special people in our family that died in this facility. Not to have to walk down the same hallowed halls was a gift for all of us- even our family and friends who, I'm sure, are getting pretty tired of ramping up the prayer chains, storming the gates and supplying me with coffee.  I know I'm tired of asking for that support.  The cynic in me thinks "well, at least in the next six year cycle the Bugs will be 15 and nearly 18 so we won't have be legally responsible much longer if we don't want to cope with it anymore." Probably not my most brilliant in my parenting coping skills. 

Life is full of choices, perspective, and cheap quippy advice on how to navigate the day to day quagmire of crap.  I  get tired of the hackneyed Christian responses "let go and let God", "He knows", "He is there and has this all planned out", etc etc Amen.  While I can not deny the deeply seated truths in these kinds of remarks, they still fall short in conveying the depth of understanding, trust and faith that it takes to get to be able to simultaneously rest in their wisdom and feel the emptiness that there are no "answers this side of Heaven".

So where do we go when words can't provide the answers and you know that God holds the answers you seek? Where do we search when we know the answers are not to be found and your heart is crying, "I've been intentionally hit by another pitch!" ? Well, I just do not have the answer. I find that to be anti-climatic, don't you?

When Emily was showing signs that something was up,  I had to go on this journey of self talk and parental scrutiny. I was watching her like a hawk and not wanting to believe that there was something "wrong". I consulted my posse of people to no avail. Honestly, I just wanted someone to tell me what to do. I wanted someone to say, "This is the way walk in it." I was not ready to relinquish all of my fears, concerns, field research and Google searches to God.  I grabbed a cup of coffee and some quiet time and begged that He would blaze our trail. He would protect our child and He would provide for her needs. 

This weekend, when the name "diabetes" had not yet entered our lives with the force that "mitochondrial" did so long ago, we prayed as a family for Emily. I don't know about you, but when I close my eyes to pray all I see is dark. That morning at the breakfast table the dam I saw was in the form of a tunnel and there was a pinprick hole at the end with a bright light. I actually had to cover my eyes with my hands to make sure they were still closed. "Amens" were said and breakfast was served. I downed my coffee as the knot in my stomach grew. I busied myself with the day and tried to steal time with each of the Bugs not in question to hear their thoughts, feelings and concerns. It wasn't until a car ride that I remembered my experience while praying. Put on the field research hat and polled the posse. Yup. Everyone else in my sample set only saw dark when praying. I went with it and decided that there was a visible light at the end of this unexpected tunnel. We dove in head first and took Emily to the place we all fear the most, because it would be the best place for HER.

The whimper she made when we pulled on to the campus and she saw that tower that has been breaking her heart since the day her sister died. I clutched my cup of coffee and told God that I am not a fan of our current situation. She bravely walked into that ED. She did all she was supposed to do. I tried to mentally check my attitude at the door with the years of mistrust and memories of bad treatment from past experiences. After a separate, private and short go around with the ED Resident (who was really pretty awesome) I made it clear that this is not mitochondrial,  and that I thought we should start with  a urine and a glucose check. I said, "I think it's diabetes." Not too long thereafter with a prick of a finger, my daughter was diagnosed. Just. Like. That. Allan was the first to recognize that we came in and got a diagnosis. Hallelujah. I am so tired of advocating and fighting for our kids in this place. There is great comfort and peace in a disease managed by a well researched order set.

Stuffing down the feelings of "this is not fair", "why her", "are you freaking serious, God," and "can't we just live a normal life", I tried to focus on my daughter with critical labs that are correct able. These thoughts seep out of my wet eyes. We focused on getting all Bugs on the same page, walking through the process and letting out all the feelings that were and still are being felt. They were catapulted into a myriad of memories they have yet to understand. When they put the pule ox on Emmy's finger, without explanation, as they whisked her to the PICU I watched my daughter begin to unravel. I did too. The one thing that my girls still talk about was how Ava's toe glowed with the pulse ox monitor.  It was just too much to bear. In that moment God mad His presence known and instead of crumbling, we followed Emmy to the place we never wanted to go (again).

There is so much to learn and our lives have just changed in the blink of an eye. I could easily get lost  in the words and the emotions and the questions. But they have no answers. They serve a purpose to help deal with the enormity of our current circumstance. But they do not explain the why's. The employees here are at the ready to help us understand "why" and that is so great of them.  Yet I feel like it's a surreal process. I've been living, a long hard time, not knowing "why" and accepting that they"why" is  not important. I could become so cynical right now. The coffee sucks, I can't leave the floor, I'm tired and I don't want my daughter to have diabetes. But there is no purpose in that. Of course it will happen, and it needs to, I just can't live like that. 

I realize that I spend a lot of time searching for the "how" now. What are the nuts and bolts of this diagnosis, how do I relinquish my child to the medical world of labs, injections, appointments and lack of control? How do I face this process I've so desperately tried to avoid? How do I help all my children understand and not to be scared? How do I know the right thing to do? How the hell do I know how many carbs I put in all the recipes I make up on the fly? How do we still do all that we do? How do we pay for all of this? How will I get through the day with no sleep? How will I know the way?

I will pad down the hall to the crappy coffee machine (which is WAY better than 6 years ago) get my earthly sustenance and I will Be Still and Know that He is Lord. He is the way the truth and the light and He will wipe all the tears I'm so tired of shedding. He will show me the way that I am to walk. He will teach me how to love and care for my Bugs and my Allan. He will point the direction for all the financial details and decisions.  When we are thrown those curve balls and want to know all the details, all we really need to do is grab some coffee (really because it's just so yummy) and tell God that you are done and can't do "it" anymore.  I see that He is helping my sweet sweet twirly girl, I know He's carrying all of us. That is enough "why" I need. 

Tough Milestones

The day I've been dreading is here. I have no idea why I've been dreading this so much, but I have. Ten years is a long time to live without your son. While I know that there will be many more years without him, this milestone just seems so heavy to me. I haven't been sleeping well. My dreams are interrupted with snipets of his hospitalization. I don't get it.

In a way, Allan and I should be celebrating that we made it this far. Ten long and hard years. Instead, I am hunkering down so that the date on the calendar will change. Then I can breath again, for a day. The day after I will just want that calendar date to change so that Ava's 4th Anniversary will pass. .

After the passing of their Anniversaries I try to feel Christmassy. They anticipation, the excitement, the Holly Jolly. But it's never the same. Yet, it's not devoid of joy. It can't be. That would defeat the purpose of the birth of Christ. I do feel joy. I am just without the jolly. It's nice to no longer be swaddled in grief every minute. Now my grief is different than that. My perspective is different. I love to give gifts, yet at the same time I don't really care. Not out of a pity party that I don't have two of my children here, but because it's not what makes happiness stick.

There is anticipation and excitement to unwrap the pretty packages under the tree. To see if you get what you wish for. What you may even long for.  Those gifts, while fun and exciting, are temporal. I'm not saying that we shouldn't give gifts at Christmas. It's just that for, me I need to remember WHY I give the gifts. I give them out of the love I have for my family and friends. I give them to celebrate that fact that Jesus' birth was God's gift to us. Had that not happened, I would have spent this last decade of my life down trodden and empty. I would be without hope.

I think of so many of our Joy-Hope families who are new on this journey through grief. They are trying desperately to assimilate the weight of the emptiness around their Christmas Tree with their external need to feel "jolly". That just winds up ugly and in a pile of tears. You feel like you are doing something wrong, because you don't feel like celebrating, or shopping, or wrapping, or mailing out cards. Each year I try to handle only what won't put me over the edge. Sometimes I run out of steam sooner than others. I pray and ask God to fill my tank and help me face those traditions I dread. Then I ask for a little courage and a little time to just cry as much as I need to.

Will you pray for us? Will you pray for our Joy-Hope families? Will you pray for those in your life who are facing this time of year with heavy hearts? I would love to change focus from the "have to be" to "get to be" joyous. Having to be joyous at Christmas really is external. Getting to be Joyous is Eternal. When you think about and realize why Jesus was born, you can't help to feel a tiny bubble of joy in the recesses of your soul no matter how dark and heavy your burden. God came to earth as Man so we could relate. So He could die. So we, who believe, can live with Him in Heaven.

That's a tough pill to swallow for those whose hopes and dreams have been crushed by a God whom we think owes us good things and all our hearts desires. God wants good things for us, however Christianity is not a "get out of trouble" free card. We still live in a world of brokenness, sin and hurt. We live in a world where we sound the gong for peace and living in harmony. We live in a world where it seems to be a good person is enough. We dangerously live in a world where Jesus is not the root of all these ideas. Yet, although we don't recognize it, He is. Living in this world with peace in my soul comes from listening and talking with God. He is the reason that some of you think I'm brave. He's the reason I have gotten out of bed each day over the past 10 years without my son. He is the reason for you to have joy and hope in our hurtful and broken world.

A Decade of Discovery

Ten years ago today, my life long dream came true when my baby boy was born. He was 5 weeks early and had the most amazing eyes. I was in love. No better feeling in the world. I was finally a Mom. Such a crazy notion to wrap my head around. It didn't matter, I was all in.

When we first learned that something was "wrong" with our beautiful, blue eyed boy our little family utopia began to unravel. This was not what I thought parenting was while I was playing Barbie as a child! How could this be? I would just hold Eric and sing to him. He couldn't hear but he'd face me and stare at my mouth with those piercing blue eyes. Then he would slowly put his head on my chest to feel the vibrations of my voice. When I stopped, he would pick his head up and look at me like -umm where's the song? Naturally, I'd continue.

Just after three months old we learned that Eric was not "just" deaf. Things happened so fast from there and on December 16, 2003 Eric died, in our arms.

I remember leaving the hospital, shell shocked, exhausted and lost. Allan sat beside me and I have no idea what he was thinking- I couldn't even comprehend my own thoughts let alone reflect on his grief.

The next morning I wondered- "Am I a Mom?" and "What do I do now?"

Being Eric's mom was the most amazing feeling. He was who I was waiting for to enter my life. It's so hard to remember that feeling without him here. But he is the only one who gets to hold the title of "making" me a Mom.

This birthday is just so tough. They all are in some ways- watching the days slip away and the distance between then in now is just so vast. But 10. That's a big one. I remember when I couldn't WAIT to be two full hands old! I see Eric's contemporaries playing sports and celebrating the big 1-0. I can't believe that he is not here and that in 4 too short months this grief, while it waxes and wanes, can be so heavy still.

Mothering a child who has died is tricky business. He's no longer with us, but our love for him is just as poignant as if I were scrambling to make a special breakfast, and buy  birthday balloons today.

I've been a mom for 10 years. A decade, one 1/4 of my life. This milestone is squelched by the need to speak about it in hushed tones for fear that someone will become uncomfortable with the unfortunate stories of my life. Even though he is not here and I am not after him for picking up his shoes, toys and not putting his dirty clothes in the laundry I am still Eric's Mom. I am proud of that fact, because frankly, he was one heck of an awesome kid. He had an old soul and an easy going nature. He was bubbling over with personality so much that it makes me wonder what a handful he would have been if he could actually produce energy.

I wish like you would not believe that I was too busy with birthday prep and lots of crazy kids running around this morning. But that was not the plan for my sweet boy's big ten-oh day.  I know that God is keeping us together as we walk though these milestones empty handed. At the same time I know that I would want no other plan for Eric's life (he wouldn't have been him if the plan were different).

These ten years have been tough. I suppose that would be quite the understatement, actually. I remember seeing a patient soon after Eric died. She was telling me about her children. As she was telling me about them, she paused and went for it. She has a son who was a "blue baby in those days" and just like that she was right there with him, her eyes brimming with love and sadness 53 years later. It gave me permission to feel "that sad" missing my boy.

I am not talking about the "stay in bed, don't move past it" grief. I am talking about "that sad because I love" grief. The "God will carry us but it still hurts grief". The "sometimes I don't want to be brave" grief. Grief will always be a part of my  life. When Eric died I never ever wanted that event to define me. But over the past decade it has. The experiences in your life morph into how you view the world, how you shape your actions.

What a sticky situation. You are hurt, because living just hurts sometimes. You expect that God will provide all the answers and you will ride off into the sunset. You think "those things just don happen to ME". I know you do. I did too. Sometimes I revert back to the idea that it shouldn't have happened to me. So now in the crisis- what is left? A life changing event, grief and a God who knows best.

HOLD. THE. PHONE.

God knows best? He has MY best interest at heart? (Helloooooo? Where the heck are my babies???) YUP. It's true. I have these awful gut wrenching events that occurred in the last 10 years. I can EASILY decide that I am going to take the reigns of my ship and glibly move forward feeling wronged and entitled, letting those feelings as a result of our tragedy reign supreme and define me.

That's not what God wanted for us or for Eric and Ava. They were not mistakes. They were gifts. Yes, it's absolutely stinky and crappy that they are gone. Some may even think that it's unfair. (Although I try not to focus on that, it does crop up during some world class pity parties I admit.) But I stand before you today, 10 years later, saying that it was God's plan. Our family would not be who we are today if we didn't step out onto the plank of grief and jump- trusting that God would catch us and move us to safety.

That is Eric's story. He made me a Mom. I learned to love in a whole new way. I learned to hurt at a whole new depth. I am learning that God, even when you don't love the choices He's made, molds me and is the one who defines me. Not through my sorrow and despair (and oh yes those feeling still are present) but through Joy and Hope.

Join me through tear filled eyes as I wish my sweet sweet boy a "Happy Birthday." Oh my goodness, how I miss him.

ADVENTURES WITH AVA.

TODAY IS AVA'S BIRTHDAY WE MIGHT GO PUT FLOWERS AT HER GRAVE. WE HAD SO MUCH FUN WITH AVA.  SHE CAME TO PRESCHOOL WITH ME. SHE HELPED GIVE OUT CANDY AT HALLOWEEN. I GOT TO FEED HER AND HOLD HER.  I LOVE HER SO MUCH. ~ LOVE, ALEXA

I love ava .

AVA, I AM GLAD YOU ARE MY SISTER. I REALLY MISS YOU. YOU MADE IT THE BEST. WE ARE SAD THAT YOU HAD TO GO. HAPPY BIRTHDAY, AVA. I REALLY LOVE YOU. LOVE EMILY.

Ava's Birthday

ELAINA  AVA    EMILY   ALEXA    MOMMY   DADDY

ERIC    JOY-HOPE   FOUNDATION  

AVA'S FAVORITE COLOR IS YELLOW.

NOW AVA IS WITH  JESUS. SHE DIED ON   12/18/09.

WHEN SHE DIED WE WERE VERY SAD.

                                   AVA

                                       ELAINA

                                            I LOVE HER.

Just keep Swiming?

 In my daily wanderings if am told  "I don't know how you do it"- in reference to working, homeschooling, Mommying, wifeing and running Joy-Hope Foundation. Well, here's the tip. I don't, remotely "do it" all. No way, no how. Not a chance. You should see my house, but I won't let you because it's THAT disgusting. Seriously, I wish I was blessed with the ability to not see the grime. Alas, that would be too easy. I see it. It torments me. It eats me and makes it hard to focus on the stuff I have to do.

This weekend was the first weekend we had "off" in months. By "off" I mean we had nothing on the calendar, at least for Saturday.So here we are, a free Saturday. Guess what kids? Want a fun family weekend??? Let's clean! (Oh they were just SO excited!) Clean we did, and I don't mean the cursory "someone is coming over in 20 minutes clean sweep" clean. I mean, let's start under the kitchen sink- (oh look at the science project.) We should  investigate said project. We are now proud owners of a new garbage disposal. (Not a leaky connection. A HOLE in the wall of the dispenser.)

Here's the kicker. When you deep clean, and you are one who tends to be ultra hard on herself, and you find one of Ava's old wipe dispensers (with wipes) behind the front load washing machine- cleaning becomes way more than making the house gleam. Just when you think all they lurking Eric Ava memories are in their proper places, bam! There is a baby hat that you gave to the girls for their dolls.

It's depressing and frustrating. Makes you want to scream, "Hey God, I'm trying to CLEAN here. You know, so I don't hate my house and myself. You know, so I can step into the shoes YOU asked me to wear. Thanks for the breakdown in front of my 8 year old. Thanks a ton."

Instead,  I composed myself, tried not to let it beat me and kept up the cleaning. It's hard to continue and fight through the grime and the emotions without feeling emotionally spent. (I'm totally beginning to understand why people become hoarders.) Of course becoming emotionally spent then leads to frustration that you can't get anything you start finished. Which leads to "why are we doing what we do?" and "How can we trim the fat, so to speak."

All of this is such a negative cycle. It serves nothing and leads to nowhere. It's not how God wants us to look at ourselves. It certainly is not how HE looks at us. To break up the self loathing, it was off to the store to get a new disposal and a new vacuum cleaner, why wouldn't that be broken, too?

Monday I found myself, still on the fritz. I found out that after 15 months battling with planter's fasciitis and a Hail Mary pass of my PT trying to strengthen and loosen my hip (that's hurt for at least 15 years) we decided it was time to take the plunge and try an expensive treatment on both my feet. Non invasive, same technology as what they use to break up kidney stones. A "you can be on your feet the same day treatment". A "94% are cured" treatment. So off I go today, ready to come home and bake the cookies I promised my Dad for installing the disposal. I'd be more optimistic about it's restorative/curative capabilities, but since when do I get the medical "miracle"? It always gives me pause to see that those experiences with Eric and Ava have trained me to stop and think that it is never "just" (insert run of the mill diagnosis).

This treatment will keep me from running for about 12 weeks. I KNOW how fast 12 weeks can fly (ahem, where the heck did our summer go?), especially with our two biggest fundraisers on the horizon and 6 families that need to get out of dodge in queue.  12 weeks of not being able to pound out the crap in my head, to put distance on my grief and clear the grime in my mind seems like a life sentence. These 12 weeks are a big issue. These 12 weeks are during the bulk of anniversary time that  Eric and Ava were on earth. I guess I can't run away from the smell and reminders this season, no more than I can run from lurking wipes and baby hats.

Yet, I treasure the smells and the lurking momento.  I sometimes relish the sucker punch, the excuse to cry. I desire the physical reminders that they were HERE. In my arms, keeping me up at night doing what babies do best, here. But, I hate them all the same. For the same reasons, actually.

So today, my Dad takes me to my appointment- which is in the same building that my OB used to be in. I come home, sore, numb and tired. Can't walk around, cause I can't feel my feet. So I spend the day on the couch wishing I could be in the kitchen, making cookies for my Dad. (Which I did make the batter, since I felt I had SOMETHING to prove. What that something is remains to be seen).

Like a flood- the frustration of C-section recovery- sitting on the couch, wanting to care for my family came billowing back. In 1 week Ava and Eric's birthday's will pass. Sitting on the couch today just made me wistful for the frustrated, stuck on the couch feeling- but with a baby- whom you love more than you could ever express.

I've played more Candy Crush then I care to today. I can't make my left foot function right yet and I am praying for bedtime to descend upon us. That's when Elaina, who loves animals more than life, comes flying down the stairs. 2 of our 3 fish have succumbed for Ich.

The tears, the sobbing from three kids all at once. Those pitiful puffy eyes, the vacant looks of dread. All back, over fish. They were able to tell us that this reminds the of Ava dying. Emily was sweet and said that maybe Ava died so that they wouldn't be so upset about their fish. So we talked about perspective and how God sometimes uses events in your life to give you a different vantage point on a situation.

We (by we I mean Allan)cleaned the tank, (which if you know us is just a miracle), medicated the water and are hoping that Rebekah the lone fish does not fall to the fate that Ich holds for a fishy. Well, if I be honest I kinda wish we didn't have any fish left- we've had them for about 4 1/2 years and they are a pain. But for my broken hearted girls who are learning a hard perspective tonight, for their sake, I will rally around Rebekah the fish.

Who would have thought that fish would live longer than your baby? You would think that the death of a pet would prepare you for loss you are sure to face. I can tell you nothing can prepare you, on either side of the coin. Nor can you be prepared for the intrusive reminders, smells and thoughts whether you clean or not. They will still come. Why? Because God is giving you perspective.

I need to remember that I am His not mine. I need to see myself and this world through His eyes, not mine. I am reminded that this week, in particular, we Benton's apparently need to grieve a bit more and gain some perspective.