Good Things

It's late and I'm staring at my computer screen as though I am looking at a blank piece of water color paper. What words can I paint for you? What image do I want to leave for you tonight?

I've had all sorts of thoughts swirling around in my head...but life is busy and messy, so I haven't had the time (ok, fine, I haven't made the time) to sit and write out any of them.

I have made time for my art. I have worked every day to be a little better, do a little more. The efforts of that work are currently up at Happy Creek Coffee and Tea, where some of my favorite pieces are up and for sale. I have sold two paintings that I know of. I am humbled and excited and in awe of this. I am an Artist. It has taken me 27 years to truly believe that in my heart. It gives me so much hope for my future.

My three year old calls me an artist. She pulls her chair up to my desk and says "Mama can I work with you?" She loves to paint too. She still doesn't remember purple is purple and mostly wants to use pink or blue. She mashes my paint brushes and she gets very intense. I love everything about creating with her. My son likes to take my paint brushes and "pretends" to paint the walls. Sometimes he finds crayons and colors on the walls...I am in a constant state of fear of what he will do with his colors. Magic erasers give me life fam. (That was ironic millennial talk for I seriously love those things).

I have been supported from the get go by an amazing husband. Who has put with so many Micheals runs that it's ridiculous. He also knows that many of the packages we get/got from Amazon are more than likely more supplies that I want to check out. I stay up late and get distracted all to often by what I'm working on. He comes and peeks at what I'm doing and says "Please come to bed by 10:30"...and I try, I really do. But it doesn't always happen that way.

He has been such a source of encouragement. He has a good eye too, he can look at a piece I'm working on and he can tell me "I don't think this one is quite there yet" and he's usually right. I have an artists heart. And he loves every inch of my messy, distracted, paint stained hands.

I have made time for playing in the floor with my babies. We roll and laugh and giggle and smile. My son walks now. He walks. And he is learning more and more how to communicate with me. He tries to run now...he will throw his arms up and shuffle his feet across the floor. He loves necklaces and almost all his teeth are in, but I can't be sure because he doesn't like me to look.

Every now and again I'm reminded that we aren't done with all his medical care. When people ask me when his third surgery is (I don't know, and I don't mind being asked!) or when he gets cold and his hands and feet turn blue. When we go to the pediatricians office and simple, small procedures throw him into hysterics. The last time that happened we got home and I had a panic attack. I had to call my mom, her voice reminding me that right NOW my children are healthy and safe and here.

I read stories of toddlers who are going through the Fontain. Anxiety and PICU stays and effusions. I have heard stories of families who have had to transfer to Children's Hospital of Philadelphia and I am comforted knowing we have close family near there. I read stories about week long stays, month long stays, and complications that lead to heart transplants. I worry that I'm not checking his O2 levels enough but then I think, would that help me or cause me to worry even more?

Either way, it's a long way off. So I have my moments, then I usually hear Dean screaming at Ellie because she took something from him and I move on.

These are small snippets of what make up my life. My messy hard wonderful life. A life that I live as well as I can, rooted in the love I have from the Lord, His strength keeping me going. His Joy on the days when I desperately want a nap or when I look at the pile of dishes that I just don't want to do. Remembering who I am in Him has helped me let go of all the other things that used to make me feel guilty.

And I am making time. Stealing moments. Writing when I can, painting pictures with my hands and hopefully my words to let you know there are good things about this world. I know because I look for them. You should too.

Two Voices. One Choice.

The list in my head starts very early in the morning.

Do the dishes. 
Pick up the toys. 
Make breakfast. 
Clean up from breakfast.
Play.
Keep the TV off. 

The exhaustion creeps into my bones.

Pay the bills. 
Remember the bills due today that you forgot about. 
Frantically search to see if you can pay them online. 
Find out you can't. 
Decide to pack the kids up to go pay bill. 
Stand in line with two tired, hungry cranky kids. 
Realize you left the house without your wallet. 
Decide to leave. 

This is when the Voice starts to whisper into my heart, "You are not enough"

Make it home.
Change diapers.
Hurriedly make lunch.
Feed the kids lunch on the floor.
Worry that you didn't feed them enough.
Realize that you have a drainer full of dishes to be put away...and another sink full to wash.
Again.
Look around. See the toys. Realize you need to pick up.
Again. 

The Voice says in a sinister way "You are failing."
A still smaller voice whispers into my heart "I Am enough for you."

That second voice is so very hard to hear.

Turn n a movie. 
Toddler cries because its not the right movie. 
Get impatient. 
Yell, spank out of anger. 
Cry when she cries. 

That menacing voice says "You are a bad Mother."
That tiny voice insists "I have give you a gift, treasure them."

Realize your toddler has been begging you all day to play with her.
Realize you haven't played in the floor with your children.
Realize that you haven't read your Bible or prayed.
Waves of guilt and shame wash over you.
Cry silently while you hold your children. 

The harsh voice starts to say "What a horrible person you are-"

And that still quiet voice becomes a roar in my ears, crashing into my heart, drowning me in Grace screaming, yelling, willing itself to be heard

"I. Love. You. Right now. Right here. I love you. I love you when you forget bills and yell at your kids and forget your wallet when you leave the house. I love you at 3 AM when your son is not sleeping and you are angry. I love you when you lose patience. I love you when you worry and stress. I love you. Right here. Right now. Right where you are." 

And I let the list go. And I sit quietly with my girl. And I tell that first voice that is has. no. power. here. And I listen to that still small voice that tells me Grace is new every minute. That tells me that I am Enough in Him. And I let that voice seep into my bones and heart.

And I am thankful for it.

Only Love

Motherhood finds me in the strangest places.

The cries of a son who doesn't sleep well. Groans as I force myself out of my bed to his crib. He stands there now and the tears fall from his face and the exhaustion is so real and potent that the compassion I should feel is evaporated. I hold him, and rock him, remind him that I am indeed there for him.

At least once a night now I hear the smallest pitter patter of feet, the slightest creaking of my door. My daughter crawls into my bed with her baby elephant and her green worn blanket. She snuggles into my arms and I can feel her breathing get calmer, slower. I close my eyes and turn my face away from her wispy hair. I can feel her become more and more peaceful. Until she crawls back into her bed, snuggled up with her animals, quiet, still.

I alternate between hating and loving these routines. Smiling at the power I have to help calm their little worlds. Crying in anguish over the messes and lack of sleep. The deep desire for everything to run smoothly, to have time to do EVERY THING I want to do. The list in my head grows and grows, constantly present. It is often put on pause.

Little hands pull at my pants legs. Little feet run back and forth in our tiny house between her room and the kitchen. I encourage the running. She has so. much. energy. Selfishness creeps into my heart, I want to sit and create. I want to make messes on paper with colors and shapes. I want to practice more and more. I want studio time. I long for quiet. I love for time alone. Joy is stolen by selfish desire.

My children Need Me. Constantly Need Me. My arms scoop them up when they are hurt, my kisses ease their pain. In the deepest black of night they long for me and only me.

There is a power in that. Quiet and strong. Of all the people in the world, and people who truly love them, my children long for and need...me.

As inadequate and selfish as I am, they need me. All my insecurities and hurts and failings fade when I hold them in the dead of night. I rock my son, his head tucked under my chin and I feel important. I snuggle my daughter close to me, my hand on her chest, her heart beating slowing from its erratic pace and I know I am loved.

Motherhood has taught me more than I will ever be able to explain. And yes, I write about it a lot. Why wouldn't I? We all have our jobs and passions. I am passionate about the job I have been given. These hard days with my children. These beautiful moments where they teach me about the self I want to be.

They don't know what time it is, they don't know about financial stresses, they don't know that I am completely and utterly exhausted two thirds of the time. They don't know what time we have to get up, they don't know what appointments we have. They only know Love.

And that I know I can give freely.

Limbo

I want to think I am over things. I want to stop having nightmares and getting angry about things that happened.

Recently, the trauma that we experienced came back full force. It hurt like mad to think about it all and what was worse, Blair was gone. I feel like such a broken record, talking about these things now that we're doing so well. Not that Dean is doing so well. I feel like people will get tired of hearing it or be frustrated with me for not getting over it. I had all these pent up emotions last weekend, didn't know who to talk to, cried a lot around four in the morning, and wished like mad that Blair was hear to listen to me.

Last year around this time we were blind sighted with another hospital stay, one that ended with him having his second surgery. The ER trips are always rough. They fit so many procedures into a tiny amount of time to make sure that your kiddo is ok. It's invasive and it's rough.

I still mourn the loss of my time with my son as my baby. I still miss cuddling this tin little squishy bundle and being home and having every one tell me how cute he is instead of asking how he's doing. I still wish I had gotten to take him home when he was a day old instead of sending him for a surgery when he was three days old. I still have nightmares and panic attacks about medical procedures. I still cringe and panic when I hear the sound of a helicopter.

The wounds are healing, but they are itching.

I still have a hard time when any one else has a healthy baby. I struggle with my own heart and the things we have gone through. I remind myself often that I'm being a petty jerk and I need to move on. I do. It just hurts for a second before I can.

And. I am angry. I didn't realize how much until recently. I am. I just am angry that my son had to go through it, that I had to go through and I'm angry that now that things are so calm and stable that I can't flip the switch in my brain that tells me I can stop panicking. And his third surgery may not be for months and years, but it feels like we are just waiting and waiting and waiting for it. Waiting to see how it goes for him. Waiting to see if he's one of the ones who it kills, waiting to see how long we will be in the hospital. Our whole lives based off of "we will see how the third surgery goes". It's always there. Always in the back of my mind.

It is a frustrating time for me. And I just feel a little lost.

And, Not Just

I worry about the word "just".

Am I just a mom?
Am I just a wife?
Am I just a workhorse?
Am I just stuck here?

I want to be more than "just". I want to be a Wife AND a Mom. I want to be a Home keeper AND my children's play mate. I want to be a Mom AND an Artist.

I know too many moms who stop doing the things they love. I'm not basking them for this, look, being a Mom is a 24/7 all the time job. We don't get a lot of breaks, we don't get time off, and vacations are nice, but still work. We signed up for it and we know it and it's ok. But I've never wanted to give up the things that I love. The things that make me so deeply who I am.

I have always loved to draw. I have always loved to color. I love to dig in clay and make misshapen things. I love to have paint on my hands and clothes. I love when people ask me about it.

For the first in my life I feel like I can call myself an Artist. Other people always have. They introduce me that way "This is Maddie, she's an artist". But I would never introduce myself that way. It just didn't feel right. I liked art, sure, I was always making something, but yet...never did I feel in my heart I was an artist.

When Dean was born and we started his life long battle with his little gimpy heart I experienced for the first time true pain. We all think we go through these things that are the hardest things, and then we go through something so much harder and long for the things that were "less" hard. I'd much rather move in the middle of sophomore and junior year than watch my son struggle the way I had to. I had to figure out a way to take all that pain and get it out of me. For my Husband, for my kids, for me.

And I turned to Art.

I have created more this year than I think I ever have in my life. I have filled notebooks and watched tutorials and made countless trips for art supplies that I "needed". I have stepped out of my comfort zone and for the first time in my life I'm truly exploring and trying new things. I have seen improvement in my work. I have seen the nameless emotions I've felt come out of me onto a page. And I have shared my work.

From this deep pain I have found out who I am as an Artist and guys, it's freaking awesome.

It cracks me up that I have two kids, a house to keep track of, a husband to keep encouraged and I have suddenly found ("made") the time to sit and work on my art. Early mornings, late nights, small spinets of time hunched at my art desk, furiously working out an idea.  My husband being the one to tell me "It's late you need to go to bed" and I'm the one saying "One more minute babe".

It just feels nice to be able to call myself an Artist. And not "just".

I am And. All these things AND.

And it's beautiful, to be in this place. To be a wife AND mom AND artist.

And is so much better than Just.

A New Shape

So I'm gonna step out on a ledge with this one. It's a hard topic for me, I'm not entirely sure I'm excited about writing this, but I know I need to.

Back in February I went to the doctor for myself. It was an incredibly weird experience for me. I'm so used to going for everyone but myself that answering the doctors questions was really hard. We talked about how I don't sleep, how I'm losing hair like it's my job in life, how exhausted I am by the afternoon and how I've gained way way to much weight (and this after making and implementing some big changes in the way our whole family eats). I was convinced something was physically wrong with me, I made them do a blood panel. I had them check my thyroid and make sure I wasn't anemic. I had them check all sorts of things. And it all came back normal. Physically nothing is wrong with me.

So...then the doctor, being a perceptive jerk face, brings up the one thing I was avoiding: depression. We go back and forth talk about a few things and he asked me to come back after a few days with these papers. Apparently if you want to know if you are depressed all you need is to fill out papers.

I come home and talk to Blair about it and tell him how stupid I think it is and how that's not really whats wrong with me and hey I've held it together all freaking year, right? And NOW all the sudden my brain starts to misfire? For real? After talking with the doctor and Blair and some trusted friends I started to realize the truth of what was happening inside my brain. There is, indeed, a misfire.

The problem is, though, that it's not *just* that I'm depressed. It's that there is this awful terrible Anxiety that's messing me up. In the past three months I have had four panic attacks. Two one night while Blair was gone. One while we were on vacation with my family in TN and one this week. I was trying very hard to use homeopathic remedies to see if that helped and for a while it did. But then we got to go out in public, we got to do things as a family. We went from 0-60 in five seconds. And it messed my head all the way up.

I've always been a believer, advocate, champion for mental health. I believe people who tell me that their brains are not functioning the right way. I believed it for everyone but myself. I have spend so much time trying to "be strong" and "brave". I have done a lot of things I never thought I would have to do. And now that things have reached a lull my brain can't stop the "do all the things, be strong, be brave." It's like it's still wired to have to fight, but the fight is at a lull. I know I should be able to relax, but my brain goes nuts and says NO NO NO bad things will happen if you relax.

It makes me feel weak. And crazy.

If you have never had a panic attack, then I'm so happy for you. I wouldn't wish this on anyone. I'm not even sure I can accurately describe what it feels like. How do you explain to someone that you forget how to breathe? How do you explain to someone that things that you know aren't happening have you in fight or flight mode? Look when I hear a helicopter my heart beat picks up and my hands shake. When I had to put the nebulizer mask on my kid this week I started to hyperventilate. Last week when my daughter didn't want to sit and eat a picnic pavilion that was near a parking lot my mind went from "she's being a kid" to "oh crap oh crap oh crap a car is going to hit her". It's not just that I worry about things, it's that I can't stop my mind from full on visualizing it and from there it all goes down hill.

It's incredibly scary. And it's scary when it happens and I'm home with my kids. This week I sat at my art desk hyperventilating because I couldn't remember how to breath and Ellie cried at my side telling me "don't be sad Mama, it's otay, don't be sad." I was texting a friend, because having a coherent conversation seemed impossible, and I kept telling her I was sorry. Because not only does Anxiety make you scared to talk about it, but it tells you that you are being an inconvenience.

Listen I know all the things. I know that I have people who love me and are there for me. I know I have people who I can call any time I need to when I'm panicking and can't stop it. I know that Blair doesn't think I'm less of a mother because some days the best I can do is throw cheerios at our kids until nap time. Please understand that this for me is stupidly hard. Not just to live with this and figure out how to live with it, but to move forward. I feel trapped some days.

I am afraid of having more panic attacks. I am afraid of someone seeing me have a panic attack. It's not an easy thing to understand. I never really did until this started happening to me. I'm working SLOWLY on accepting that right now this is where I am and that it's ok.

I am mom with a kid with special needs and a toddler who also just needs me all the time and I have depression and anxiety.

I love my children and my husband. I love what we've been given and how we've been shaped. I know this is just shaping me.

After: In The Flames

Today a rare and exciting thing happened. My kids went to their beds for their naps and I didn't feel the soul crushing exhaustion that I usually do. All the sudden there were multiple things that I could do. The possibilities seem endless.

It's been a while since I've been able to write. It happens. I'm a mom, I get busy. Really busy. Even now I feel guilty taking these moments to write when I look to my right and see the messes that are waiting for me to pick them up. And I hear the dishes calling my name, reminding me that there are still things that need to be done.

I wanted to write when Dean turned one. It was an exciting month for us, February was. We did a lot of things, saw a lot of fantastic people and celebrated with cake (several times) our little dude's birthday. There were presents and cake smashes and staying up way too late and pictures and it was great. It was really everything that I wanted for his birthday.

However I am experiencing this strange conundrum now. It's called After.

After a year of fighting and doctors and shots and medications and emergency air lifts. After a year of saying good bye to Ellie and being away from Blair and nurses. After a year of diagnosis and trips and asking, constantly, for help. After all this, what's left?

We're still a family, but we're not a family on the verge anymore. We aren't constantly worried he's going to go into heart failure (ok, fine, I AM not constantly worried he will go into heart failure). All the sudden the smoke is clearing, the fog is lifting and we get to do something phenomenal.

We get to simply be a family.

And oh man...it's a little hard.

All the sudden we can start to do things, we can go back to Church, we can go to the park and the grocery store. We're going on our first real family vacation. We get to worry about normal bills and cars and doing our taxes. We get to focus on disciplining Ellie and turning off the TV more. We get to paint and talk about our dreams. We made actual real life goals for the year.

All the sudden I'm working on learning ho to be a "normal" mom who doesn't live in a hospital. Who doesn't have to speak medical jargon. Who has time during the day. Who can sign up to do things with the Women's Ministry at Church. Who is learning how to incorporate the Lord into every aspect of my life.

It is not easy though for me. I'm having a hard time talking to my husband. I'm having a hard time remembering that I can go out and DO things. I am having a hard time juggling housework and quiet time and time with my kids, though I promise you, I know which is more important. I all the sudden can leave my son with people other than my parents or my husband. His godmother watched them on our anniversary so we could go out (WE WENT BOWLING AND IT WAS AWESOME) and I wasn't worried I'd get a "call" the whole time we were out. Ok. Maybe I was, but that's because I'm convinced this kid can't survive without me.

Truth is though that he is can. He is tough and smart and quickly learning what NO means. And this requires me to redefine who I am as a wife, mother, sister, daughter, and friend.

I'm dealing with a lot of other things as well. Things I'm not sure I have the courage to write about yet. Things that just are bringing me more and more to my knees. I feel like I have been so "strong" for so long that all the sudden... I can relax ever so slightly. My body knows this, but my mind is having trouble following that line of thinking.

We are still working on lots of things with Dean, we probably always will be. But we're in the sweet spot now, a sweet spot that seems to be TOO sweet to me.

I am still praying for the courage to write about all aspects of my life. I've always been proud of myself for being vulnerable and all the sudden God has taken that pride and shut it down and put me to the flames. When you're put to the flames, you have two choices, let it burn you or refine you.

I am praying that it refines me.

Thanks for tuning in my friends. It felt nice to sit and write this out today.

Take Four

I have officially started and deleted three blog posts, maybe the fourth one will break me out of the weirdness I've been in. Writers block has me hard and I'm not always clear on what I want to write about or how to make it cohesive.

I worry that people will get tired of hearing what I have to say. There are a million and one blogs out there. There are a million and one writers, most are far better than I am. Most are better at conveying their thoughts than I can ever hope to be.

I am afraid that people will find my life boring. I'm a mom now. What's more, I'm a mom under house arrest until cold/flu/RSV season is over. Very rarely do I leave the house. Very rarely do we get to go anywhere together as a family. We don't even get to go grocery shopping together. I take Dean to his appointments or possibly Grammy and Grumpy's house when I'm really feeling lonely. I cancel plans with people who tell me they have colds in the hopes that we never bring it into this house. Blair goes to work, he comes home.

I stick so closely to our routine and schedule because my children (bless them) have started taking naps at the same time. And Lord Help me, that hour of quiet is LIFE to me. LIFE. It's what gets me through the day. If we make it through nap time I can make it until bed time and God help us all if the routine is thrown off. And this is all I have to write about right now.

Nap time and quiet time, kids TV shows and routines. I change diapers for a living and I clean. I constantly clean. Because if I do not clean the house will erupt and chaos will ensue and DEATH DESPAIR DESTRUCTION. Most of the time I realize what a blessing this is. My baby boy will be a year old soon. Whoah. The weight of that does not escape me.

Mombie though is a real thing. I find myself putting off showers (because I'm not going anywhere and honestly, I'd rather sleep). I either ignore people or I talk too much and end up complaining. My friends don't ask me advice that much any more because I have "so much on my plate already".

My husband is bi polar and while I don't talk about that much on my blog, it affects me in huge ways. He's been great about taking his medication, but the weather and the long hours and being couped up at home and stress all play into his moods. Some days I don't know who I am waking up to. Some days I don't know who will be coming home from work.

And I am tired.

I am tired of bills and appointments and blood work. I am tired of calling and emailing a million times to get his medications straightened out. I'm tired of the crippling guilt I feel when he goes a day or a week without one of his medications. I am tired of hearing of another CHD Death.

Two babies. Two babies died this month and everyone is arguing over people they will likely never meet. People being mean and petty and name calling and I'm wondering how long my son will live. Wondering if he will be next. Wondering if his heart will last. We've made it a year. A whole glorious amazing scary tough hard ridiculous year. I've done things I never imagined I would have to do and I cannot fathom that we have had him almost a full a year. 365 Days. Wow. It gives me chills to write that.

The Heart Community is amazing. You will find some of the most amazing people there. I've made some crazy amazing friendships through support groups and messages. We are friends. We are family. And when one of us in the heart community hurts, we all hurt.

I follow stories of babies who are fighting, who are on ECMO, who need miracles. I follow a young man who is on Hospice and I follow babies who have had heart transplants. I hope for them. I root for them. I pray for them. I hurt for them.

There is a lot of life in these groups. Success stories and encouragement. But there is Death as well. And I live with that. I have to. I embrace it. I have to. Because Death is part of Life and I hold it close to my chest and whisper "please not us, please not us"...knowing I have little control over it.

I've been hesitant to write about this. About the Death that I see. People do not want to know about the death. They do not want to know that it could be my son. They want to think the best and I'm so glad that they do because I'm cautious and scared still. Learning how to live life fully while watching the health of your child is a hard thing.

When my friends have Heart Caths or procedures...I'm like a mad woman checking for updates. My parents ask about the different kids and stories now. They pray for them too. And when they come out of these procedures and operations I'm elated. I am joyous. Because if they keep making it we can keep making it.

I am tired.

A bone weary tired that most of the time I can forget. I have been blessed with space and time to be able to work through my feelings, to be able to draw and create, to talk to people. I workout and I grocery shop by myself (probably because we can't as a family haha). I have friends I text and talk to, I know I'm not alone.

But on the worst days...it feels like we're in a life boat and we are very very far from the shore. Very far indeed. Hematology appointments get me every time. They throw me into this funke. They stuck him five times today. Five Times. I held his legs and arms down while he turned red and tears ran down his face. And I have to pretend he's not my kid. I have to pretend that it's ok. I have to pretend that this is what every parent does. I have to pretend that he won't remember any of this. I have to pretend like it will be over and we won't have to go back next month. I have to pretend he's not my son or I think I would go mad.

Even in the middle of this I had to stop writing and go help Blair while Dean vomited.

I hate CHD's. I hate HLHS. I hate that I see so many parents say good bye to babies. I hate that I watch people struggle. I hate watching techs dig around in my sons arm to get the blood to flow. I hate that babies need heart transplants. I hate it.

And every now and again I need to say how much I hate it. How much I hate all of this. How much I feel was stolen from us knowing that it was so much could be given to us. I hate how much it stretched me out of my bubble, how it it ruined things for me (I get so weird about peoples 20 week scans...you see gender...I see organs). I hate how much it made Blair and I argue, how stressed we both were (and really, are). I hate how much we had to be carried by other people. How often we had to and have to ask for help.

It all makes me a better person, but that doesn't mean the growth didn't hurt.

I am tired.

Tired of seeing Death so often. Tired of seeing hurting babies so often. Tired of people being so petty about the stupidest things. And physically...y'all...I could go for a nice. Long. Nap.