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.

Thoughts on Today's Breakdown

When I was younger I used to love adventures. I loved to drive without a destination, loved to take off and get lost, loved to find neat places and spend time there.

I'm a little older and while in theory I love those things, I'm also a huge fan of consistency and schedules and everything flowing smoothly.

Today, things did not flow smoothly.

Things didn't even really flow. Things kinda...got splattered all over the hood of the car while you're going 80 miles per hour and you think "Oh God what the crap." Just. Saying.

So the story goes like this, our "good" car has been acting funny. Just a little funny. Enough for us to say, yeah, we should get this looked at, but not enough for us to be like, nope, no more driving for us. Plus. Appointments. We can't not go to his appointments (even though we ended up canceling one)(ugh). So here I am in the city, a little over an hour away from home with my ten month old son and our car goes from "lets get this checked" to "this is not safe don't drive it anymore." I'm on the side of the road going from Appointment A to Appointment B and my car will not accelerate. In the middle of an intersection. On a three lane road. With my very cranky screaming ten month old.

I wish in my very core that I were better about break downs. Something about our cars not working strikes this instant flight or fight mode in me and I straight panic. I called Blair. No answer. So like every Daddy's girl out there I do the only other logical thing, I call up my Daddy. Who is amazing and wonderful and who talked me through my next steps and said "you really shouldn't be driving it like this." He also reminded me that first and foremost I need to be taking care of the very sad baby in the back seat. Ok. Got it. Take care of baby.

Problem was, where I was stopped, I could not get out of my car without another car taking the door off/hitting me. Both bad options. So I try to see if the car will go again and it does. At this point I'm on the phone with Blair talking to him and he is being very calm. As I go to turn off the busy road, the car stops accelerating again. As I'm going uphill. On the busy road. While on the phone with my husband. Who lost contact with me and thought we'd been hit. Fun. Ok. At that point the small human is VERY upset with me. I'm shaking and worried that I won't be able to get the car off the road without getting hit, but THANK YOU JESUS, I did.

I pull into a very nice house in Fairfax that is for sale. You can go look it up on Zillow here if you would like. It's a nice house, carpets are awful though. There was a very nice agent who was very worried about me and Dean. He told me that if the house was warmer he would have let us stay inside. The people he showed the house to had an adorable little girl they totted in, the Mama gave me a "of you poor thing" look.

Blair came and got us, we were able to go his work office get his car and get home.

Hindsight. I wish that I could have been calmer and more level headed. If I had, Blair would not have had to miss more work and I could have gotten back home on my own. It frustrates me how incredibly panicked I got today. Though, in my own defense of myself to myself (what?), when Blair saw the roads where I was he understood why I was so upset.

I am thankful that we were not on the highway when this happened. I am thankful Blair was on his way to DC on the Metro for work and could easily get to me. I am thankful that my Dad answered his phone and helped me calm down a little bit. I am thankful that no other cars hit us. I am thankful that I had several friends offer to come get us. I am thankful that my discipler and friend was texting me while all this was going on and reminding me of TRUE things. I am thankful that Blair got to talk to the president of the company he works for and tell him how thankful he is for all the help that they've given him.

I am thankful.

And I am tired. And I FEEL defeated. I FEEL like this is just one. more. thing. I FEEL like we are doing this all wrong. I FEEL like this is my fault. I FEEL like somehow some way, I caused this.

I FEEL this way. I KNOW this is not true. And I rode home with Blair, telling myself "God did not promise you a car. He promised to meet your needs." So. If we do not have another car, then God will provide a way for us to get where we need to be. I might have to call a lot of people. I might have to adjust everything about our lives, and I will do that. And I know that we have enough people that it will happen.

I'm just..I just...oh I am tired of this season. I am tired of feeling like I'm not doing enough. I'm tired of feeling like we don't do enough. I'm tired of not feeling like we can do this on our own. I am tired of asking for help all the time. I'm tired of making calls and asking and asking and feeling like I'm taking. All the time. I don't want to ask for help. I don't want to need help. I don't want to any more.

Today was not easy. And that's ok, we've had lots of not easy days this year. Ha, this wasn't even the not easiest. There have been much worse.

These are not the type of adventures that I want. These are not the stories that I want to tell. I just want to feel like I can breathe. Just for a second.

But I'm finding it hard to breathe, so. Good thing that God is giving me some scuba gear man. I have a mighty need for it.

An Ever Changing Canvas

The months have flown by without a blog post. I've tried to write one or two here and there and never seen to want to push publish. My days are full. My son is needy. My two year old is a two year old who is quickly approaching becoming a three year old. The sass is very strong with her.

Our days are filled with the mundane. Piles of laundry, a sink that is never empty, people who need to eat a stuff (who knew, right?) and the constant constant picking up of the toys. I have tried reorganizing my home what feels like fifty million times and it still fills with clutter. My house is too small for clutter. It is on going. An ever changing canvas.

I know, deep in my heart, what this Holiday Season means for me and my family. I know that last year I would stop and cry and wonder if my son would be here with us this year. Putting up our Christmas stocking put me in tears. Dressing Dean in his "my first Thanksgiving" onsie put me in tears. Planning what to buy him to "open" on Christmas put me in tears.

In the past year I have become part of a community that welcomed babies into this world not knowing how long they would be here. Some are still with us and some are not, leaving their families with holes that will never be filled this side of Heaven. I cry at these "little" things because I know families who all Season long will be grieving their lack of little things.

And yet. Yet.

Some day this is not enough for me. I still grieve over what life could have been. I was given the incredible healing gift this week, something that had thrown me for a loop and reminded me that I still having some very sharp edges and that my canvas is not finished. I brought food to a precious family that welcomed their first boy into their family. While there, his amazing trusting Mama plopped him in my arms, and I just lost it. I started sobbing.

I had forgotten how small babies are when they are born. I forgot how much they sleep. I forgot that they look so peaceful while they are sleeping. I forgot how much they snuggle into you, these little new bodies. I forgot how it feels to hold a newborn in my arms. And then I remembered.

I remembered that when my son was three days old I kissed his face and sent him for a heart surgery that I wasn't sure he would come out of. I remember eating breakfast with my husband, waiting for the beeper to go off with any news, but afraid of the news at the same time. I remember what he looked like when he came out of surgery, the image will haunt me for the rest of my life, that piece of plastic that separated his heart from the world. I remembered the days and weeks that felt so endless, of the longing I had to hold my newborn and the constant waiting.

I miss his babyhood. I miss him being small and snuggling in my arms. I miss the three days i had before his surgery when he wasn't scarred. I do. I miss it. Don't give me this crap about how those scars are proof that he survived. Trust me, I know he did. I know those scars tell stories of life, but don't negate the pain that they caused. I refuse to forget the pain of this. Because the pain brought us life, there was a price paid for the life.

The days and weeks being home have not been easy. I fight this inner pride and selfishness daily. I want to talk about what I've given up and how my life feels put on hold. When I catch myself thinking that way I give myself a sharp "So?" Because the point is that this is not about me any more, it's about my babies. About surviving. About letting go of what I think I need to want and remembering that what I've been given is amazing. And remembering that the alternative is that my sons high chair could hold his ashes.

It is easy in these endless feeling days to be impatient. It is a whole lot harder to remember thankfulness and gratefulness when the toddler is poopy, the baby is screaming, there are three loads of laundry to be done, and the sink needs an exorcism. It is harder to say thank you for this, when it's midnight, you went to bed at 11, and the baby woke up and just won't stop crying unless you hold him and rock him for an hour.

That happened the other night. Dean was in a mood. And he wanted me. Only me, Daddy did try. And I was exhausted. And emotional. And here I am rocking this baby and all the sudden, the broken places in my heart surface and I just started crying. This was one of those good cries. The can't breathe, biting your lip, snot and tears just rolling off your cheeks type of crying.

Because here I am, rocking this baby who is a miracle and all I want, literally all I am praying, is that he goes back to sleep because I. Am. Exhausted. Finding that balance...learning to live with the everyday things and the miracle, is actually really hard. Teaching my heart to be thankful for all things, learning to trust that what God has for us is GOOD...is a constant battle.

But one that I am up for.

I realized I have not let parts of me heal. I have not opened the wound and it has become infected. I didn't realize how much it really hurt to completely skip over Deans babyhood, and go straight to baby with serious medical issues. I didn't realize how "strong" I was trying to be until I found out I built walls on sinking sand...

I told Blair during my rock the baby cry fest that I don't feel like I am enough. That I don't enough for him, for Dean, for Ellie. That I am constantly failing because I can't keep up with laundry and dishes and bills and insurance and keeping the house clean. And he said something so sweet..."Why do you have to?"

God did not call me to be a mother of these two kiddos because I am enough. He called me because I am not enough. Because my moments of weakness and strife and pain...all of that, brings me back to Him and allowing Him to be God in in my life.

You can believe that or not believe that, I don't care. What I am saying is that on a daily basis, without God, I would be a hot freaking mess people. Because moming is hard. Moming my son, is hard. Not being a selfish jerk, is hard. And I am still so very broken by some of the things we went through this year. And still so in need of healing.

Christmas is a time of gifts. But...my kids are alive. My son is alive. I feel like those are all the gifts I want. I feel like asking for more is selfish.

I am an ever changing canvas. A constant work of art. Living moment by moment, just like everyone else.

Of Broken Hearts

I am not there yet.

Which means that my heart thinks and feels awful awful things.

Mostly, jealousy.

Huge amounts of jealousy. Big heaping spoonfuls fed up to me on a barbed wire spoon, cutting me when I try to swallow.

I am jealous that you got to hold your new born after they were born. I am jealous of your hours old photos of siblings meeting one another, Daddy holding Mama's back. I am jealous of your breastfeeding pictures, your laments over cracked nipples and cluster feedings. I am jealous of your new born snuggles.

I am jealous that you take walks outside. That your child rolls or lays on their belly. I am jealous that you don't have to worry about g-tubes, or oxygen levels, or blue lips. I am jealous that a cold means a cold and not a hospitalization. I am jealous that you see your friends as often as I see nurses. I am jealous of belly laughter and smiles and cries that are simply cries.

I compare, I compare too much. I look at your life right now, as it is and I think about our lives right now, as they are. And because I am human and far from grace, I want you to hurt. I want to gather up the blackness and ugliness I feel and give it you.

But in the same breathe...I don't want you to hurt.

I don't even know how to articulate these feelings. Except to ask for forgiveness when I shy away from you. If I cry when I look at your child. If I have to hide your pictures and your posts from my eyes. If can't help but mention where we are and how different it is from where you are.

Large chunks of my own heart are still healing. It was torn open the day our son was born and I went to sleep without him. It was ripped just a little more when he was three days old and I gave my beautiful whole unbroken son to some nurses and got back a broken open baby that I barely recognized. It was stitched back up the day that I got to hold him again. Those stitches rip open every time we take him back to the hospital. Every time I give him a shot.

Be gentle with me, my heart is broken too.

And when I see you, and your whole baby and your whole family, the redemption and the rainbows, the scars in my heart hurt just a little more. Again. And I do not want you to know what this is like. I do not want you to know this pain, this deep seeded jealousy that threatens my sunshine.

I am glad that you got to nurse your baby. That you got to hold that little girl or little boy. I am glad that you never worried if their heart would stop beating. I'm glad you do not have to administer medications and watch for blue hands and lips. And at the same time, when I see these things I am reminded how different this story is.

My son is not the only one working on mending their heart.

God is working on mine too. Bit by bit picking up the parts that I thought I "couldn't" glue back in and doing just that. Each time that it feels like my heart will break from the loss, the pain, the jealousy, the anger, he gently threads His needle. And He says "It is sharp, it will hurt. But you will be Whole. You will be mended."

Be gentle with me.

My heart is being operated on too.

Fierce.

I can recall a specific time when my mom showed me just how fierce she can be. 

We were at dinner, and my Dad was getting onto (read, yelling) at one of my brothers. I'm not sure what he did, but I'm pretty sure my Dad was being a little harsh at the time. We younger kids sat in silence, watching wide eyed. One of my younger sisters was probably crying because she has a tender heart, and if someone was in trouble she took it pretty hard. I remember watching my Mom during this exchange though...I could see her reaching a point that we did not like to see her get to. I vividly remember her SLAMMING her fist on the table (the dishes jumped I swear) and her telling my father "YOU will NOT talk to MY son that way."

I will never forget the look on her face.
Or the look on his. 

My parents had always been pretty united. They were one and the same. They made choices together, and even when they argued we watched them come to a conclusion together. Rarely did I see my Mother truly YELL back at my Father. This was one of those times and I think it's important that it was about one her babies. 

My mom taught me how to be fierce. She taught me to stand up for myself', she taught me that I was beautiful and talented. She cried with me, she prayed with me, she taught me how to be a woman of strength and dignity. 

And I have needed that knowledge and teaching more in the last year than ever before. 

Every day I am faced with the choices I need to make for my sons health. Every day I wake up deciding that today I will do whatever I need to do for him. Every day. 

And it. Is. Hard. 

It is hard because some days I don't want to. I want someone else to decide what to do for him. I want someone else to tell me what's best. I want someone else to know him better so they can make the tougher calls. It is hard because I don't want to tell the doctors that even though what they see looks good, something in my mama heart is still worried about our boy. It is hard because they hurt him, and I have to let them, because without it, his life would be forfeit. It is hard because I know too many woman with babies who didn't make it, babies who were doing just fine. Every day, we are faced with the fact that we might not have our son for long and every day I have to chose to say
"Thank you" for that. 

I have a beautiful friend. She has a project called the "I Chose Joy" project. It's amazing. She took what could have broken her and decided to find joy. To Chose Joy. Every single day. There are shirts  you can buy, I would highly recommend it. (The proceeds go to Joy Bags, which are sent out to parents who have found out that their little ones have HLHS...they offer support and love in a very difficult time.) So why bring this friend up?

Because I still need to be reminded to chose Joy. I still forget. I forget to see the Joy in the day, I forget to smile at nurses and techs, I forget to snuggle close to Blair and love on him. 

And I forget to tell God "Thank You." 

Thank You for giving our son half a heart. Thank You for making this road a hard one. Thank you for needles and medications and daily xrays. Thank You for shredded tires (that's a whole other story...) and sleepless nights. Thank You for clouded lungs and chest tubes. 

Thank You for drawing me closer to You, for reminding me how truly weak I am and showing up and reminding me how truly Strong You are. Thank You for teaching me, daily, to find MORE Joy. 

This is what I've been thinking about all day. Especially because I started a blog post that I will NEVER EVER PUBLISH. Seriously, I started writing, re-read some of it and closed my computer in disgust with myself. Boy did I need an attitude adjustment. 

And instead of my mom slamming her fist on the table, God slammed his mighty fist on my heart. Reminded me of the truth. 

And He told me to suck it up. Keep going. 

Every day. 

So I will do it all again tomorrow. 

I will fuss at the doctors and tell them that the way my son is acting NOW is the way he was acting before his lung filled with fluid and he turned blue. I will fight for more tests and more answers and I will advocate for the boy God has given me. 

And Lord have mercy I will be fierce. I will call on all the strength and dignity that I have and I will find the Joy. 

Because it's there. I know it is.