"We're going to see Bubby"

Anytime we go to a hospital, which since Noah died, has been about 4 or 5 times, Ava thinks we are going to see her Bubby. We, of course, explain to her that Bubby is still with Jesus in heaven and then proceed to tell her why we are going to the hospital and who we are going to actually see. I think it is sweet that she gets excited to see her Bubby. In her little mind, that is all she knows of her sibling, was the hospital. She doesn't understand getting to take a baby home, or having a sibling to play with, having to share toys(at home), or mommy's attention. She is obsessed with babies right now though. She has a baby doll named Bubby. She loves to get Noah's blanket off my bed and use it for her babies, during her nap, sometimes she gives it to me and says, "Bubby's blanket, he was a sweet sweet baby". etc. She knows all she needs to know for a 2 and a half year old. She is so smart and sensitive. Ava knows when mommy is sad and will crawl up in my lap, hug me and say, "it's ok mommy. I love you. You miss Bubby?" She loves deeply. She is aware. I wonder how this process will look as she gets older, but I hope that she will always look back at each step of her becoming more aware of her Bubby and the impact he had on us all, with pride. I pray that she will always know that she is a huge part of Bubby's story, that she is a huge part of Mommy's healing and that she is the apple of Daddy's eye, the one who can always make us smile, surprise us with her sayings, frustrate us with her (mommy's) attitude. haha. She is our sunshine and as she likes to say, "I'm mommy's sunshine and daddy's moon". :) She brightens up our life and I know God gave us to her first for many reasons. She gives me so much to live for everyday. She pushes me to be better, to extend and teach grace, to love, to laugh, to stop and play, to soak up life. She is such a joy and I'm beyond grateful for her role in our family.

brand new ava

going home

Mommy & Ava's 2 week adventure before Bubby came

 Ava had to grow up so much when this journey started and as I watched her go through the process, as we all did, she just amazed me at every point. I cannot tell you how much she adapted under such crazy circumstances. She started the journey as a baby and has grown into quite the little, sassy, spontanious and goofy little girl. She truly is our, "amazing Ava" as Tpaw coined.

Driving to Ft. Worth to start the journey

Big sister day!

The only way she would get in the big bed with mommy

Ava would not get in my hospital bed with me unless there was a popsicle involved, so I totally bribed her. She did amazing on Bubby's birthday! She was well behaved, she did so great with it all and made mommy so proud.

meeting Bubby for the "second" time

During the entire week I was in the hospital, she was so sweet for her Mimi and Pop and everyone she was around. Her grandma, papaw, etc. She ate great, played well and gave mommy plenty of snuggles and kisses.  I remember wondering how I was going to split myself in two so I could be with both babies. I couldn't be at home, with my newborn and my eldest, doing all the normal things, snuggling, letting her hold him on a pillow, etc. It was hard for me to not be with both of my babies at once. She always

kept me smiling. Through everything, she made it better. I cannot imagine going through it all without her. I am certain that God knew we would need her gorgeous eyes, silly smile, funny laugh and constant energy. God knew I would need her snuggles, kisses and hugs to keep going. I just know that God has huge plans for her in every season of life. She certainly has shown us that from the day she was born.

waiting room fun (always in a waiting room)

RMH breakfast

footy jammies at RMH

Pop & Ava spent lots of time on the slide

I cried every Sunday afternoon that she and Nick and sometimes mom and dad would leave. I just knew she would forget me or come back to ft worth and be scared of me or something. Silly I know, but I truly worried that she would fall behind developmentally as she traveled all the time, had no schedule, was with different people all the time, eating randomly, napping in waiting rooms, etc. As a mom, I was so strung out on not being there and not being with Noah at the same time, but every time, she would just impress me and show me some new thing she learned or wow me beyond my expectations.

brushing her teeth like a big girl

Playing on the Cook's playground

playing with Daddy

Ava loved the playground and the "cove" at the hospital. She would play for hours and it was so nice to have something for her to do during all the downtime when she could not be in Bubby.  I am just still, so thankful for all she learned and experienced during Bubby's life.

Skyping with Mommy 

Mommy & her babies

                                                                                                         Sometimes Ava gets                                                                                                            pushed to the side 

                   when it comes to the story 

                     of Bubby and I felt like it 

                          was time that I showcased 

                            her and her amazing 

                            journey as Big Sister.  

visiting her bubby

Ava's first plane ride

waiting room nap (again)

Bubby's valentine from Sissy

Valentine's Day with Mommy

Snow cones with cousins on Bubby's Memorial Day

First family photo

Last Family photo of 4

More hospital fun

another waiting room nap

 Ava has been and still is Mommy's Sunshine. There are weeks like this one, where I do not want to raise another child. I do not want to have sleepless nights, potty train again, etc. Lord knows what he is doing and what he has planned for us, but I learned from Noah that I must be surrendered to His plan and not count on my own. The frustrating days are deeply frustrating, but the amazing days are more than incredible and remind me that our toughest days are always worth it. Ava has been and will continue to be our sweet girl and we are so thankful that we get to watch her grow, develope and learn. The other day I looked in the mirror in the car and saw her worshiping. She had her eyes closed, hands raised and was moving her head back and forth and singing along to "Forever Reign"... She's smart, she's aware, she is amazing. I realized that without her Bubby and his story, she might not have such a deep knowledge of Jesus as she does. I'm thankful for that.

Meeting Bubby and Nurse Kathy gave her a "magic wand"

Sometimes I miss hospital life. I do. I didn't struggle to realize the worth of my family. It was made aware daily. I didn't forget how precious my friends were, I was always desperate for them. I am thankful for the life lessons we learned, the life we shared and lived, the love we grew and the way we got to watch Ava grow and learn while Bubby was alive.
I'm thankful for nurse Kathy, who informed us and made us aware that Ava could come into the PICU and meet her brother. We didn't realize it until she let us know, because we were used to the NICU rules. Without Kathy, we might not have our first family pics or have the sweet moment of Ava seeing her bubby for the first time. Thankful for the nurses that would always go out of their way to make Ava feel at home and loved on at Cook's.
Bad days come and go, often, but Ava always makes even the worst day bearable with her love and her smile. She is my precious girl and I will forever and always be thankful.

LOVE you Ava! Mommy and Daddy are so thankful for you and your part of our story.


Blessings to all,
Noah's Mommy

The W's

My Favorite Month

I love November. I love Thanksgiving. So many people have their favorite holidays. Usually you find that Christmas and Halloween are up there, followed by 4th of July and maybe even Easter. Thanksgiving has been almost run over by Black Friday, now starting on Thanksgiving evening/afternoon. Seriously? We can't have 1 day out 365 that we aren't focused on buying something, trampling over each other and can't just play a game or be still and watch a movie, maybe visit with family until whenever the shopping fools get up and go do whatever they do. ha. I just have no desire to ever do Black Friday. There IS a reason they call it black, right? Anyway, I just love thanksgiving. We come together, make a bounty of food and enjoy it as well as fellowship with closest family and friends and then rest. We watch football or take naps, sometimes at the same time, play games, catch up with the cousins, lounge in the recliner and read a book, and then go back for seconds and another piece of pumpkin pie. Maybe it seems gluttonous to some, but maybe it is an actual holiday where we aren't focused on GETTING anything. We don't stress and run around trying to find something to get someone with the little budget we have for them or going into debt trying to impress. We aren't disappointed if we only got a scarf and not some expensive gadget or wad of cash. We simply get together, to be together. Hopefully we all find ways to express our thankfulness for what WE ALREADY HAVE, not what WE WANT TO GET.

I have fond memories of thanksgiving. We had so many houses to go to because our families live here that we were always hopping from house to house, but each side has things I vividly remember. My mimi was an absolute wonder in the kitchen. She would make her list, shop, (three different stores, for the best deals) plan ahead by cooking certain things ahead, preparing other things the night before and then had a written schedule with times on it for when certain things went in the oven and when other things came out, when to set the table, what napkins to use and one year she made little place card sail boats out of pecan shells and toothpicks, with little white flag name cards. We used those for years. The family would squeeze at the table and pass around every dish, stuff our faces and visit, laugh and just be together. I know she relished those times and soaked every moment up.

My radiant Mimi (and pumpkin pie)

Mimi knew how to live richly. She made every holiday and every Friday night fried chicken dinner, every Sunday roast lunch, every half a grapefruit breakfast and a whole wheat bagel with coffee in the morning, matter. She just loved life. She rarely complained and Thanksgiving was her crown and glory. :) Christmas was a close second, but I just saw her glow and then an hour or so after the big dinner, she would get a piece of pecan pie, a little dollop of cool whip and savor each bite of that pie like she earned it. and she did.

The Byrd side ALWAYS has cheese grits (homemade by aunt linda), pink fruit salad (by gran), a kids table and a grown up table, cousin time, playing spy at the old house upstairs, group pictures, using the pretty dishes (even as kids we got to use neat dishes), green bean casserole and the pickle tray. I always ended up getting a bread and butter pickle on accident and had to sneak it to the trash. eew. Football naps and reading books are where you will find the Byrd/Goodell & now Weisgerber and Whitfield men after the meal. Most likely you will find all the Byrd girls around the table laughing and remembering old times, catching up each other on current events and just enjoying being together. When we were little, I can remember enjoying and sometimes getting wounded in a battle of spoons. :)

Thanksgiving is a nice long day of comfort all around.

Mimi's recipes in my kitchen. 

I got to where I was old enough to help with Thanksgiving cooking and so I learned to make Mimi's crescent rolls. Staci began making pies when Mimi couldn't quite muster the energy to do it anymore. Mom would make a small turkey and I would make Mimi's dressing. Not stuffing. Dressing. :)  We made things as close to how they were, but they weren't exact. That was ok though. Byrd Thanksgiving is still the same, sometimes with an empty seat, because we are all strung out about the state/country. Times change. This time last year I thought we would be home by Thanksgiving, but we weren't. In a few days, it will be a year since Noah had his 2nd open heart surgery to get his pace maker placed. I just sat in his cubicle knowing we wouldn't make it home for thanksgiving. Crushed you might say. God was working on me. I was feeling selfish and having a pity party that we wouldn't get to be home, around family, with our traditions and usual events. I was frustrated to say the least. I was so weary of the hospital, the lonely weeks, the fast weekends. Our sweet family in Ft Worth, of course, hosted Thanksgiving and we were welcome to be there and were thankful to as well. I wanted to be a part of it and so I thought I would make crescent rolls. I got up early and started the dough, let is rise, etc. It wasn't working out right. It was stiff and just not like it was supposed to be. I was frustrated, again. I gave up. I was going to throw the dough in the trash and send nick to walmart to get Mrs. Baird's brown and serve rolls (which are good by the way), and then go sit and pout the rest of the day about the failed attempt. My dressing turned out good. The rolls were to be my one thing from home that would make the tradition stay alive, since mimi wasn't. The first thanksgiving after Mimi passed away and I just could not go without crescent rolls. (i know, a lot of whining over bread) It was more than the bread though. It was the memories, the traditions, the feeling of abandonment from the Father, that Mimi wasn't here anymore, we were stuck in a town we didn't really know, our son was STILL sick, nothing was right, no one was in the right place, and God didn't seem to care. That was my heart. That was why I went in the bedroom and cried. I just cried and pouted. I showered, got ready to go throw the dough away and then talked to my mom. I remembered that mimi was an improviser. I thought, well, I will do what I can with the dough and see what happens. I rolled out the dough, cut rolls out and put them on a pan. I let them rise a little, as much as they would, and then put them in the oven. They were gone in about 15 minutes, once lunch began. I suppose they weren't too bad. They weren't actually crescent rolls. They were just plain ol rolls. They were a little dense and nothing like mimi's really, except that they were there, the dough wasn't sitting in the trash defeated. So, I was thankful for another Mimi lesson that day and soaked up the rest of the day with family, tried to enjoy taking turns going into Noah's room. (mom and dad stayed up there all day with him, so Ava could have some mommy and daddy time at a home, not the hospital) It was an interesting day, but we also go to spend time with family we never get to, we were made fully aware of how blessed we were, even in the middle of such hardship and hurt. Noah was in recovery mode still, during the weekend, but a few days before we had thanksgiving, I had been able to hold him for the first time, he had been taken off the ventilator for the first time(after 51 days) and he got to meet his uncle keith, see his grandma and mamaw and made some big Thanksgiving memories.  God always gives us something to be thankful for. always.

holding Noah a second time 

So, here we are. One year later. I look into November and remember making a thankful poster for Noah's room, instead of our thankful tree we always do. I remember fighting so hard to keep an attitude of thankfulness and gratitude even when I wanted to cry and whine every day. Somethings never change. I want to sit and cry and whine some days, that Noah isn't even here now. He doesn't get to be passed around at family gatherings, he won't know the taste of mommy's childhood thanksgivings, the joy it brings me to get up and watch the parade while making the dishes we bring to the family gatherings. I just wish that he could be a part of our lives in the tangible ways my heart wants. I know I know, he might not have even been able to be in crowds of family, enjoying life at all, depending on how severe his needs for oxygen were or how he felt on a daily basis, the issue of cold and flu season. I know, he is in a completely better place, in a way that I don't even understand yet. I know. I'm thankful. I don't need to be reminded that he is healed now. :) I know full well.

day before his pacemaker surgery

I'm thankful. November is a time to be thankful. For EVERYTHING, not just the things we like, the good things that make our life complete, but the things in our life that sometimes suck the life out of us. I'm not saying be thankful for things that are wrong, sinful or should be eliminated from our lives. Those things need to be repented of and dealt with. I 'm talking about being thankful for the things that seem inconvenient at the time, the things that are just not how we like them. Be thankful that you drive a 2000 model that runs well and doesn't require car payments, instead of whining about how you wish you had a newer one. Be thankful that your children leave messes, have a dirty room, maybe even drive you crazy, because you get to hug them, love on them, tuck them in at night and have them in your arms. Be thankful because some moms have sons and daughters over seas serving our country and their safety is in danger every minute of every day. Be thankful to have your husband or wife home with you because some people have been left in a position they never thought they would find themselves in this Thanksgiving, alone perhaps. Whether it is distance or severance, people will be lonely this holiday. Someone, somewhere is thinking of a loved one who passed recently or maybe a long time ago. A man or woman is sitting in a prison cell, truly repentful and seeking the Lord and misses his family. Another prisoner might be sitting in the cold concrete room angry at the world and wanting to give up on life at all. The holiday season isn't about YOU. I have come to realize that it isn't about thankful trees, pecan pies or crescent rolls but about a Savior and the life we have available to us because of that Savior. Do what you do, at each holiday, in light of that. Don't focus so much on the traditions and the must haves that we miss out on the could be's and the means for service, thankfulness, and love. (to others, not just ourselves)

one of very few family of 4 pictures. Thankful.

Today, Ava and I will start our thankful tree. I want to instill in her traditions and past times that she can look back on and smile upon or even carry on to her kids someday, but we will be adding some new things this year as well. Noah made us a better family. He MAKES us a better family. He is and forever will be our boy, even if he just made it home quicker than we did. So, we will continue to live thankfully and share our thankful hearts, the reason we can be thankful in such heartache, with others.
Find a way to show your thankfulness besides getting up at midnight on Black Friday and squishing people to buy an xbox or some big tv. Maybe think of something outside the "box" and let gratitude become expressed tangibly. There are plenty of people that need your love. They need your thankfulness to show, so they can catch some of the hope you have.

I know I feel challenged today.

May November continue to be my favorite, not just because of all the yummy traditions and super fun activities, but because in 2012 a little boy reminded me that life isn't about traditions but about the One who made a way. Made a way for Noah to be in heaven. Made a way that I can be there too, someday.

Anyone want to join in? Make November a month to remember, by finding ways to love and serve. (someone other than yourself) I know that focusing on the good will not always make it easier for me during the holidays, serving others doesn't always take the sting of the loss away. Missing Noah is an everyday occurrence, not just a holiday thing, but Mimi reminded me of "making the best of" any situation, even after she went home, and before Noah joined her. So, I WILL  make the BEST of this month, this holiday coming up, the pain I deal with so often, it all becomes a part of the journey and the journey is a good one.

Thanks as always, for riding this road with us, for the support and love we receive from each of you.
Be blessed this thankful season,

Noah's mommy

In A Perfect World

In a perfect world, Nick and I would live in a 4 bedroom, 3 bath home, with a large backyard, with a tree that has a tire swing, a nice back patio with a covering and lots of room for a garden and playing. We would have plenty of space, like a basement and open living area for lots of people to come over, for kids to play on DNow weekends, for ladies craft nights, Bible studies and life groups. There would be plenty of room for 3 kids to grow up in. Oh and all three of those kids would be perfectly healthy and have no problems of course. There would be a large kitchen with a central island, lots of storage, neat nooks and crannies that hold special treasures of old, counter tops to roll out cinnamon rolls on the first snow each year, a big oven to make thanksgiving dinner, space for a nice dining area and bar stools so my three kids could sit and talk with me after school while doing their homework. Nick and I would have a nice spacious master bedroom with a huge bathroom, walk in closet, whirlpool tub, etc. I would have "my space" in there, with a nice cozy corner consisting of a comfy chair, bookshelf, lamp and window where I could peer out and watch it rain or snow, read and write. I want to write.  The kids would have their rooms, and we would have a basement full of fun things and family games. We would have two reliable vehicles in the garage and I'm sure Nick would love a dog or two, a cat or two, some fish, maybe a bird and whatever other animals he could rescue. He truly wants a zoo. Nick and I would run a thriving design business and art center. We would continually be involved in our church, ministry and other civic events. Family gatherings would happen often at our home. We would attend all of our children's school events, have friends over on the weekends and soak up life and all its goodness.

I said a perfect world. Don't we all know that a perfect world doesn't exist. Of course, most of you probably have the world I'm describing above already. Maybe you have that life and you think it is mundane and boring, typical and ordinary. I long for your ordinary.

Finding joy, gratitude and thanksgiving in the middle of your mundane is hard. Waiting upon the Lord for something that is not even guaranteed is sometimes where He meets us and tells us again, to trust him and turn our hearts back to him again. If you were to tell me, a few years ago, that I would have 2 children and one was going to die, I would have snickered, because God is good and He has my best interest in mind. Right? Don't we all say God is good, He knows the plans he has for me, plans for a hope and a future. Those words don't always seem true do they. If I were to look back a few years, I didn't think we would still be in our starter home, Nick still driving the car he has for over 10 years, etc. Life doesn't always happen the way we plan, the way we want, the way we hope and dream.

He hasn't left. He sees you. He knows.

I sat at church Sunday morning and was weary. Weary of the struggle to always budget, always have to repair things on our home, not always getting to go do fun things or buy new toys for the family, etc. It gets weary being responsible with our money. We sacrifice to allow me to stay home with Ava and we are seeing benefits and amazing blessings because of that sacrifice. There are days when it just bears down so heavily that we break and say "ok Lord, I'll go fix this. I'll go get a job, put Ava in day care, live in the same little house for the rest of our lives, never travel, never enjoy ourselves again, all on top of dealing with the death of our child." "here is my obedience Lord" *eyes roll, as I go lay depressed and whiny in my bed and let the tears roll* All these events of Saturday evening coming to mind and then all of a sudden, feeling the need to scribble words down in my notebook, I began to write those words. He hasn't left. He sees you. He knows. over and over. He cares. He loves you. He hasn't forgotten. He didn't leave. He has a plan. WAIT. Wait on Him. Don't let go. Keep on looking ahead. Sorry, Matt, I might not have heard the last few minutes of your sermon, I finally had a moment with the Lord that I have been needing for months though. So thanks for ushering in an environment for me to listen to Him.

Somehow, grief begins to plant seeds of entitlement. It can be scary and hard to keep them from growing. I begin to get the attitude that "my son died, so surely we get to catch a break on plumbing repairs, or other expenses we weren't expecting" "our son died, so surely we get to find that perfect house, get that random check in the mail or whatever." Life isn't easy, whether your child died or not. Life sucks, sometimes, even when you have everything you could ever imagine. Nick and I have always tried to remind each other to never be "happy when", but to be thankful and see what we DO have in the moment. Experiencing the death of a child, DOES put things in perspective though. Does all the fluff really matter, as long as I have what I need and God provides that, always does.

Does God really listen to my pitty party moments? Yes, of course he does. Does he honor them? I'm not sure, but I really don't think that my whining has ever gotten me what I want. It sure didn't with my parents. God listens, he cares and he knows better. My timing is never his. Obviously. Somehow he knows what I need, when I need it. There are so many things He is doing behind my view and the point of faith isn't just to know it will be ok in the big times of life, the deaths, the births, the job change or the big move, but in the mundane, the daily grind, the boring and sometimes gutter cleaning feeling days. When the budget is exactly where it needs to be, but no more, there has to be gratitude, not complaining. When we are all cozy in our little 2 bedroom home, when it is 30 degrees outside and raining, there MUST be thanksgiving and not whining. To be content, is not to settle, but to be so sustained in the provision of who God is and His character, that the worldly and earthly things aren't such a big deal.

So, if you see me or Nick driving his old Monte Carlo around, thank God for us, that we have 2 vehicles and no car payments. If you see me wearing the same outfits for a few years, it's not that I don't want to be fashionable or "in style", we just have other responsibilities that mean I don't get to go shopping every season. We spend what God gives us in the places he calls us to, and don't get me wrong, we spend some frivolous dollars, but rarely are they there to spend. Ava wears hand me downs, our lawn looks pretty dreary, the house needs painting and there isn't enough room to have many people in it. It isn't spectacular, but it is ours, it is home and it is shelter. We are NEVER WITHOUT though. Ever. We are so rich in the eyes of the world.

Entitlement can be a large idol, that we may not even know is there, but when we start thinking we deserve any of what we have, then we become god in areas of our life, that we can't be. There can be no places of our hearts or minds that take the place of Him.

That means, here I am, publicly confessing the fact that I have felt entitled, I have felt that I have earned my dream home or my dream life, because I have endured the death of a child. It is wrong, it is not how God asks me to respond to my grief, and so here I am saying "Lord, this life is precious and everything we DO have is yours, everything I WANT to have is up to you and yours. My children are yours, obviously we have given them to you in different ways, my marriage is yours, our life ahead is yours. Giving it all back is the only way that there will be room for Him to work, move and bless. So get out of your own way. Quit being the stumbling block of your mind, of your family, your dreams. Let the one who has given you those dreams, be the one to make them come about.

If you ask where we live, I would tell you the ghetto. haha. If you ask where I want to live, I can tell you, today, I want to live where God calls me to live, because for 5 months, I lived in 4 different places and some days I wish I was living that life again. I  just want to be where He is. It will always be ok.

He is STILL good. He will always be good. He will always see me. He chooses to know me and desires that I know him. That is grace for the day.

I looked at one of Noah's doctors the day before he died and asked, "God is still going to be good right?" He answered yes. I knew the answer, but sometimes we need someone else to tell us what we already know. So, I'm saying that, 8 months later, He is still good. He may not seem near, always, but I can say, that He will always be good.

Thanks for loving us. My prayer is that God uses my weakness. Be blessed
Noah's momma

More than blessed. 

2nd floor please

I have found that when in a room full of people, even those closest to me, I tend to push my emotion downward. And it is ok. No one in my close circle pushes me to be a certain way, at a certain time or expect me to follow the norm, they know better. It is not that I am not sad or hurting that my Noah is gone, I just choose to save my emotional moments for myself (and nick of course, he is my person)

Cook Children's Medical Center put together an incredibly thoughtful and beautiful service Sunday afternoon for those families who's child died in the PICU during the last almost 2 years. Those that could make it, came, had pictures on a slide show, a candle was lit and words were spoken by medical staff and the chaplaincy dept. It was a lovely time. Doves were released in the prayer garden in honor of the children who had died. They truly put love and time into it and as a mom I was thankful and felt very loved and special.
I realized, yet again, just how different we all are, in our grief. I could look around and just wonder at how we all take loss in such different and yet meaningful ways. Grief is such a taboo subject, yet at the same time, everyone is affected by it and everyone knows someone who is dealing with it or they themselves are in the midst of it. I suppose that grief is as common as celebration. That is ok. Services such as the one we attended yesterday just don't stir my emotions, as it does others and that is fine. In many ways I swell with pride and thankfulness that my son is of the honored and he fought the good fight. I get the proud mom face on and soak it in. Those times I just don't let a lot of tears fall. The moments I find myself letting my guard down and feeling the wetness touch my cheek, are the walks down the hall, pushing the 2 in the elevator, ringing the doorbell to the PICU, walking by the cafeteria, the play place, the gift shop and front entrance. Those quiet moments of normalcy that I got used to, coming back into that context makes me weep. I weep because I miss it. Deep deep down I miss that place, the people, the smells and the long walks. I miss them because I miss the one for whom I was there for. I weep because I and especially Noah are free from all of that now. I just weep because the mix of emotions just overwhelms a momma's heart. The bittersweet taste in my mouth as Nick and I walked the familiar halls. The immediate turn to the right as I walked into the PICU to wash my hands before handing over the treats we brought. The conversations with dear dear friends, as they continue to care for little ones, endlessly. There were times before Noah died that I swore I would never go back if he died. He would have lived his entire life there, encapsulated, and I could leave it there. The second Noah died, I just wanted to stay though. I wanted to come back and I still want to go back, because, for that same reason I thought I would never come back. Noah lived there. I feel him in the halls, in the elevator, in that cold bathroom with the showers, that I had to experience far too many times. ha. I would do it all over again.  I weep because walking into the hospital now, means that I'm there for someone else. (as much as I am there for myself too) I am there to love on and encourage those who did SO VERY MUCH for my baby, for myself and for my family. So many things come to mind when I walk out of Cook's. Thankfulness. Pain. Heartache. Joy. Inspiration. Empowerment. I am a better person every time I visit that place. I'm refocused and rejuvenated as a wife, mom and person in general. I want to help every single family that walks in those doors, knowing that is nearly impossible. So I am asking the Lord for what I can do for the heart families. The ones that are in the place I was this time last year. What Lord, is it, that I could do or give that would make a difference, lessen the load, care for or love on that lonely mom, nervous dad or precious sibling? I have my ideas and I pray that they come to fruition and that I will be able to see God work in it.
I know God has so many plans for our family. Sometimes, the demand of the mundane makes me forget that we are set apart, that we are still on his radar and in his hands. I forget that the plan for our family didn't end on February 22, 2013 at 10:40pm. Life didn't end there. When the dust of home gets to be too thick for my lungs, I head south on 287, go slowly down i-35 (usually) and hit I-30 where I will see blue roofs and a familiar feeling rushes over my gloomy heart. I made it through the longest year of my life, including the hardest 5 months I have ever experienced, in that place. Everything about Ft Worth (for me) is magical now. It is this special bubble. I know for those that live there, this is absolutely absurd, as I feel the same about Amarillo. So, every few months, God seems to give me the opportunity to visit and be refreshed. It might only be a few hours at a time, but it is always enough. Bubby left his mark, God made His mark on me there, and I am forever changed, grateful and will always need it. I will always need the people there, the friendships and relationships. I will always be thankful.
 I'm not sure where you are in grieving, or maybe you aren't but know someone who is. Give them space. Help them find that place that inspires and refreshes and encourage them to go there, as often as needed. I'm thankful for those around me who continue to let me be me, let me grieve how I need to, and also push me to keep going in the direction of hope, grace and joy.

If you are reading this and need help with the loss of a child, I am not sure that I can be of huge assistance, but will try. There are some amazing resources that I have come upon,
Kathy Guthrie and all her books.
I am currently reading A Grief Observed by C.S. Lewis
This book touches not only on grief as a whole, but it is his personal experience in the loss of his wife. Incredibly honest, raw and perfectly written.

If you could, please say prayers for a little 4 month old boy from Amarillo, Harley, who is in Houston recovering from a liver transplant. He has his ups and downs and we continue to pray for him to recover and thrive.
Please pray for those families who were at the ceremony yesterday, including ours, who continue down the road of loss and grief.

Please know that if you feel you need permission to share this blog with someone, you have complete permission. It is public and I pray it ministers to those who need it. My heart and my prayer are to lift up and come alongside anyone who could use someone who is in the middle of it all still. Grief, heart moms, etc. Thank you for being someone, in my life, who supports, prays and loves me through it all. I appreciate you all.
God is faithful. He is doing good things in our life. I am waiting on Him for many things, knowing that He sees, loves and delights in us still.

much love,
Noah's mommy

Resources

I have found a great resource for those grieving. I have found some great help and encouragement from listening to Nancy Guthrie and look forward to reading some of her books. Even if you have not suffered loss first hand, you know someone who has and this is great advice. She has many great, Biblically based bits of information, help and advice for helping those who are grieving, etc.

http://www.nancyguthrie.com/

Hoping this might help someone like it has me,
shaina

Looking Back

A year ago today, our 3 day old son was going through what most people
will never go through in their lifetime. (and it was just the first of 3)
Open heart surgery is so mind boggling to me.

I know it is mind boggling because I have not endured years and years of school and practice to become accustom to it. I also know that if I knew exactly what they were doing to my son that day, I would have probably not have gotten through it the way I did. They are totally honest and upfront about the basics, as they should, but I left the details up to them. I trusted our surgeon, the OR staff, the PICU staff upon his return. There was just this level of "he's going to be ok" that I settled into that day. With the support group we had that day, it was easy to stay peaceful and calm, watching after Ava, still being in recovery mode myself from the c-section, it was a quiet day at the hospital. We awaited every phone call they made from the OR. It was intense, but it was ok. I remember eating in the caf, camping out in "the cove"
(the hospital's indoor playground), trying to rest when I could, frozen yogurt (the hospital has a froyo place) actually laughing and just being together was a blessing.  The whole 5 months was intsense, but it was always ok. Somehow, someway, that peace that surpasses all understanding always found its way into my heart, into the room, into the situation. There were days when I wanted to be mad and angry and I was. I let it out often, I probably had more than my fair share of whining and complaining and I still do. Certain nurses will tell you that I am/was not always "peaceful" or "ok". They loved me anway and through it all. I'm forever thankful for that.

I began to read this verse this morning and realized that without knowing it, the more I would thank God for the little things, just take things a day at a time, savor everything as it came and find ways to worship and be thankful, that is when the peace settles in. It never settles in during my whining, during my doubting, during my questioning. Only when I began to write down or say things that were OK, that were good, that were obviously a blessing would I begin to feel peace and be FILLED with peace.

⁴ Rejoice in the Lord always. I will say it again: Rejoice! ⁵ Let your gentleness be evident to all. The Lord is near. ⁶ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

⁸ Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. ⁹ Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you. Philippians 4:4-9

So, I guess what I am trying to say is that there have been days since Noah's death that I have forgotten how I even got through the hard days when he was alive. I did not forget that Christ is my strength, I just forgot to tap into it. I began the "why don't we get a break" attitude and the way I prayed suddenly became conditional, since He didn't heal Noah here on earth. I figured that if my prayers weren't being answered then surely something must be wrong in my life. What am I doing wrong? I still struggle with that. I am sure, in my humanity, I will always wonder what I did wrong to have a child with a CHD, to have to watch my little one suffer the way he did, but when I (not in my own strength either) finally said, "no matter what happens, it will be OK, God will still be in control, and somehow He will never fail us or let us go", then did I finally have that peace. It would come and go, sometimes days were easier, but I realize looking back that I would find a place and unload to God in my journal and I was search out every nugget of truth in the Word, daily. Every single day, sometimes for hours at a time. That is why, in the midst of my biggest storm in life, I could "be ok", "have peace" and let God do what He so desired with Noah. That is where we recieve our strength; in being with Him.
I have to be honest and tell you that the day Noah died a piece of me died too. It felt like part of my faith, if not all of it, died. I know it is normal for grieving mothers to have that time of pain, hurt, doubt, lack of faith, "why me's", nothing will ever be the same again attitude (and it won't and that's fine), the feeling that if I had to give my child back then don't I get a break for awhile, from the trials and pains of the world? All of those things, I deal with daily. Somedays are better than others. Some days the pit of grief feels warm and comfortable and I don't want to be bothered there. I want to lay there and be sad, be lonely, be withdrawn. I like it there some days. God knows there is no life in that place though and so He usually has Nick draw me out, put a smile on my face and in my heart and he helps me move on for awhile. The "dark days" generally do cleanse me and remind me that my, our, hope is not in life on earth. Somewhere in all of this grieving mess and adjusting to life now I have lost that peace, that "ok-ness" that no matter what happens, no matter how life works out, it will be OK. I realized, through our convicting and yet gentle, loving and kind small group (that I fought all day yesterday, trying to find a reason to not go) that for one, He has never left. Two, I'm not the only one with a boat in the storm. Three, I've quit rejoicing. I mean, I'm thankful, but I quit having the mindset and heart that no matter how life goes, there is something to rejoice over. Perhaps I put on a good front most of the time, but when I get down to it, my heart has not been rejoicing. I give good lip service in that way, but I can say that I haven't been honest in the "God is good", etc. That word in Habakuk, that sermon that was preached by a dear friend of ours last fall, that carried me and kept me focused on rejoicing through it ALL, I seemed to have filed away. If God won't answer this prayer, why would he answer any others? If we had to let our son die, for "His Glory", then why would he allow us to suffer through issues that we can barely afford to fix, get fixed, pay for, etc. Why would we barely make it sometimes after letting God have it all and do what he wanted in our life, in the life of our son? I don't understand so many times, but He doesn't relent, until he has it all. In February, He had it all, in September, He's having to ask for it all back again. We tend to do that. We tend to take stuff back and instead of letting him have every ounce, good or bad, we take little bits back and then we begin to feel entitled and that we deserve better or more than what God has already provided for. So, He uses Noah in our life, yet again, to draw our attention, our affection and our commitment to Him. I will never have the means to make my life whole again. Eternity in heaven is the only thing that will make me whole. But, I do know that somehow in all the mess we have to deal with right now, that He has never left. We are not the only boat out in the storm and He wants it all, with a rejoicing heart. That doesn't mean we don't have honesty with him and we don't get mad, frustrated and hurt when things don't turn out the way we want. Whether it is in the death of my child or in the fact that we have been asking God for big things in our life that he has yet to even sort of respond to. So, I'm not sure where else this is going, other than the fact that, if the only reason we had Noah was to keep us continually focused on God's way and not our own, then ok. The peace that surpasses all understanding remains and His love never fails, never gives up and never runs out on us. 

If I were to update you on our life a year from Noah's birth, I'm not sure I can even describe how provided for, blessed and thankful we are. God has never left us, even when it feels that way. He has plans for our family even when we feel like we are being punished or forgotten. God has certainly blessed us with people, some we don't even know, who love us well, carry us through and have more than honored us by their love for our son. Thank you cannot begin to cover what our hearts feel for each of you. God is faithful. 

We have settled back into life, Nick works, I stay at home with Ava still, we have begun our venture into the small business world of graphic design and art lessons. We are super busy with things at church and try to spend lots of time with family. We are planning on going to St. Louis for Thankgiving, to be with Nick's dad. They spent so many trips coming down here during Noah's life that we want to go up there and be with them. 

I know that so many people still pray for us often and we are so grateful. Please lift up what God has next for our family. We take things a day at a time, but know that God has plans for us, especially in our business endeavor and we want His hand upon it. There are other things in our hearts that we are asking for favor and blessing in. Trusting God is such an adventure. 

I will leave you with some memories of that first week. Many of you know that the day after Noah's major open heart surgery he went into cardiac arrest and they almost lost him then. There are so many things that happened that first week and without the prayers of so many, we would have lost it. Love you all. Thank you all. 

Blessings,

Noah's mommy

Playing in "the cove"

Grandpa and Ava reading a book

Ava meeting the Cook's Puppy

Harley Socks

He really was a little baby at one point. :)

Noah buried in all his "equipment"

I could tell you what all of those did after awhile. :)

Ava learned to nap anywhere, anytime. 

Finally let go of some fluid and looked normal size. 

Tired, but together. Every weekend was sacred. 

Jewels

Thanks again for all the love, support, encouragement and prayers. We are forever grateful. 

The Cost of Grief

It has been an interesting few weeks. Let me just say that I have learned that material things, earthly issues and matters don't seem near as big of a deal as they did before having Noah. Yet, that does not mean that having to fix the washing machine, the jeep's battery and alternator, getting our roof repaired, going to have to paint the house, get my wisdom teeth out, window repaired, etc. doesn't get annoying. I mean, we're talking around 8 grand in reapairs and upkeep of everyday life. ugh. I think satan tries to use these issues, well, I know he does, to get us in a vulnerable spot. We begin to think poor pitiful me. We even begin to feel that we are entitled to less suffering or less hardship just because we love and serve God.

In fact, I have been going through some deep grieving lately. It is always there, but sometimes it just gets heavier and harder to maintain. While in this valley, you could call it, I discovered I began having this terrible anger problem. I realized I was getting snippy and short with Ava, A LOT. Not just  your typical toddler/mommy spats, but with things that should not have been a big issue, I was flipping out. Simple mistakes made by Nick or myself would result in me getting angry and would throw me into a depressive state for anywhere from a couple of minutes to a day or more. I would try so hard to pray and focus, to remember who hold the future and who held everyday of my past, the one who knows me and still loves me, but I could not shake the anger. I still deal with it. I have confided in some special people in my life and I couldn't be more blessed to have a sister in Seminary, studying Biblical counseling. She sisters me but has some depth and knowledge to her advice and I'm thankful for that. I have decided to seek help with a counselor for some of my deep pain and issues. I suppose I am telling you this because there is surely someone who is facing the depth and darkness of child loss and is trying to function and do it alone, by sheer will or by stubborness. You can't do it. I feel that I have a strong faith, it has gotten me through so much and continues to sustain me in everyday life, yet, having a neutral party who can help me sort through some of my questions and longings, I have realized, does not make me weak or lacking in faith, but makes me human, real and willing to get through this for the sake of myself, my husband and my daughter.

You see, grief is NOT an excuse to sin. Maybe you didn't catch that, but grief is NOT an EXCUSE to SIN. I could easily try to justify my anger, my depression, my ugly words towards nick, inpatient heart towards Ava, my snippy words, bad attitude, harsh judgements, etc by saying I have gone through hell. It feels as if I have, but that is no excuse. If I am to go deeper and know Christ and share in his suffering I feel as if he is taking me to this new level of grace and mercy within the depths of my sinning, to show me that suffering from grief is part of carrying my cross. DAILY.

There will never be a day I do not grieve the loss of my son. ever.

Perhaps when Christ so boldy says, "Whoever loves father or mother more than me is not worthy of me, and whoever loves son or daughter more than me is not worthy of me, and whoever does not take his cross and follow me is not worthy of me. Whoever finds his life will lose it, and whoever loses his life for my sake will find it." Matthew 10:37-39 Perhaps, he MEANT it. I'll go out on a limb here and tell you that there are moments when my missing and grieving Noah is more painful that anything and not even scripture seems to heal the wound, but at the same time, God isn't calling me to be happy and comfortable, even in healing. He is calling me to follow him, to press into him, to love him. MORE. THAN. MY. SON. more than Nick. more than Ava. In order for me to be worthy of him, I have to LOVE HIM MORE than the things that mean the most. So, I must lay down the anger and find help to deal with my anger, I must, in my grieving, allow Him to hold me and be enough for me. Because, grieving Noah is not sin. Missing him is not wrong. But, putting that grief and anger ABOVE him IS. Not dealing with it is. I must begin letting him take the anger and entitlement, frustration and the feeling that I deserve good things because I went through the death of my child.

I may not be making any sense, but I have felt more conviction of this and the need to share with others that in our grief, we can begin to put our loved one above God, we can end up worshiping our grief and it begins to make us become obsessed with the grief itself, not letting it be a tool to make us better. I begin to see more clearly now why I have been dealing with such turmoil and agony inside. God continues to use Noah to teach me, to mold me and then to share with you those things. The other night I randomly wrote down that I didn't want to learn anything in my grief or find a way to feel better. I just wanted to wallow in it, be in it, soak it up and let it overwhelm me. That was a trap and I almost fell for it. Don't get me wrong. I can grieve anytime I need to, but I can never have the mindset and attitude that grieving is the answer (always) or that the results of grieving are all ok. Anger is ok, frustration is ok, but sinning in the middle of that, by lashing out at my husband, showing anger and poor reaction to my daughter is not ok, judging others' lives simply by the standard that they haven't lost a child is wrong. God is calling us, even in our loss, to a deeper level and a higher calling. We must grieve and miss our child, but we cannot conform to the world's way of grieving. We must always end in a deeper knowing of God, Christ and His way.
This is a hard word. This is a word that I am even having a hard time digesting and I know that is becasue it is directly from the Lord. Please pray for those you know who are grieving, for those who do not have Christ in their grieving. Be patient with those of us who always talk about our child that is no longer here. Show grace and love as we try to move past the hurt and the feeling of betrayal and move into the beauty of grace. (as most anyone reading this, already does) :)

To those of you grieving alongside me. Please seek counsel when needed. Don't be too proud. Let others help you. For those grieving, who are believers. We must not let our grief become sinful. It only allows satan to create footholds for others, we do not represent Christ's love or his healing and we appear as if we do not actually believe that he is enough for us. I say this in love, as I am living this out, trying to rely on God moment by moment to not let my missing my son become costly to  my daughter. Costing her joy, happiness, a healthy mom, a respected daddy, costing her a childhood of happiness and adventure for one of watching her mother deal with the ups and downs so harshly that she begins to feel it was her fault, in her small, innocent mind. Please reach out. Don't let others watch you destroy yourself, for the sake of the grief and hurt. I know it is real. I still feel it every moment. I am in this with you. Be wise. Press into the Word. Be willing to be held accountable. Do not love your loved one who's gone, more than your Lord. I am. Trying. Join with me and let's give God glory. In. All. Things.

Prayerfully,
Noah's momma