Lately, I've found myself feeling guilty for wanting to speak of my daughter. But why? Am I too worried about other people's comfort or an awkward conversation or the abrupt end to a conversation? I don't know.
I've felt many things that I honestly wish I didn't feel. I wish I didn't feel this hesitation because I'd love nothing more than to shout AVERY MARIE from a rooftop and talk about all of the amazing memories I have with her. I would talk about all the things she taught me and how she was the strongest little girl I'd ever known.
In almost every conversation, someone else is talking about their beloved child (I do not blame you one bit) and something that they did, said, are doing, are planning to do, etc. Even in the most random conversation, my mind ALWAYS makes some kind of connection to my missing piece, my Avery. Oh, you're telling me about the other night at the grocery store? I used to take Avery with me grocery shopping... You didn't get a good night's sleep? Avery had JUST started sleeping through the night before she was hospitalized... You had a busy Saturday? I used to not know which days were Saturday because every day's routine was the same but oh so special. It is exhausting. It is exhausting putting on a happy face. I wish my mind didn't rush to these places but how is one supposed to function 'normally' when their child is in Heaven?
I'm not sure what phase (I hate to use that word, because a phase should end) of grief I'm in, but I'm at the "I'm so distracted by the fact that my child is no longer here.. One day they were here, the next moment they're not. How is that possible? I carried this child for 9 long months, gave birth, breastfed, clothed, bathed, talked to, sang to, did life with her. Where is she?? What just happened?" phase and honestly it sucks. Attempting to 'do' the holidays just doesn't seem right. I want nothing more than to include her in some way. *Death does not negate existence.* We are a family of 3, plus 2 that we never had the chance to meet. I can almost guarantee that I will cry at the mention of her name, but its because it makes this momma's heart so so happy to hear her baby being thought of and name spoken. Don't ignore it because it's uncomfortable for you, we are all uncomfortable here, there's nothing comfortable about this.
December 8, 2015
November 18, 2015
Journals, people, and Jesus
Writing is therapeutic for me. It always has been. I've kept a journal of some kind since middle school. I wrote about middle school drama, friends, you know, the usual. I wrote about my high school years, meeting my husband, in math class. I wrote about our engagement, the days leading up to our wedding, then [ our ] big day. I wrote about married life, job searches, friendships, family.. I wrote it all for me. For myself. Then, I wrote about the day we found out we were pregnant. I remember that journal entry like I wrote it yesterday. I love how God lets you remember the best things. I wrote about my pregnancy, the excitement in telling our families and friends. Before I knew it, I was writing to someone else. I was writing to my daughter. I started the entries with Dear sweet pea or Sweet baby...Once we knew she was a girl, we picked a name, Avery Marie, and then it became Dear Avery...I wrote about the love that we had for her before we even knew her. I wrote about how she was 'making mommy feel sick but it was OK'. I wrote about all the things we were going to do. I wrote about how great of a daddy she had and how I couldn't wait to see them together. Once she came, life got busy and somehow I didn't think about writing. The greatest part of me was in my arms and that was all I needed. I went to my journal once she left us to be with Jesus and my last entry was about how excited we were to meet her, from August of 2014. I started my entry on May 5 of this year with "Man how things have changed..." Now, I write to my angel, praying that she hears my words.. For some reason, I find myself reading what I write aloud, as if reading to her. When I'm done, I feel a little better, for the moment.
I've learned that you have to do what helps you, even if no one understands it. I've learned that there are going to be some people that welcome a conversation that might be uncomfortable for them, because it's what you need. I've learned that it's OK to let people go for a little while, maybe your paths will cross again, when the time is right. I've learned that the most unexpected people will be your most precious gifts. I've learned that a simple, stupid heart emoji can bring tears to your eyes.
I'm not sure where this was going, but it is feeling good to get it out. With the changing of seasons and holidays approaching, I have been in a constant state of shock, numbness, happiness, sadness...all at once. Yes, that's possible.
I find myself praying for others who are hurting right now because I know their pain. Too many parents without their babies. My heart hurts knowing the days ahead for them. I can say today [ask me tomorrow, it may be different], that it does change, though things will never ever be the same, you will have moments when you can breathe, you will have moments of clarity and thankfulness....Savor those moments because when the grief-tide washes over, it will almost take you with it. You are able to do way more than you ever knew humanly possible. You are. I miss my Avery so much I physically ache for her and the thought of living the rest of this life without her literally takes my breath away. But to know she is pain-free, happy, well, perfect, and with Jesus...That's all a mother could want for her child. I always prayed that she would grow up to be a Godly child, that people would be drawn to Jesus through her. I prayed this before she was born, I prayed this once she was with us, and I still pray that now. Her story isn't over. I have to live, for her.
I've learned that you have to do what helps you, even if no one understands it. I've learned that there are going to be some people that welcome a conversation that might be uncomfortable for them, because it's what you need. I've learned that it's OK to let people go for a little while, maybe your paths will cross again, when the time is right. I've learned that the most unexpected people will be your most precious gifts. I've learned that a simple, stupid heart emoji can bring tears to your eyes.
I'm not sure where this was going, but it is feeling good to get it out. With the changing of seasons and holidays approaching, I have been in a constant state of shock, numbness, happiness, sadness...all at once. Yes, that's possible.
I find myself praying for others who are hurting right now because I know their pain. Too many parents without their babies. My heart hurts knowing the days ahead for them. I can say today [ask me tomorrow, it may be different], that it does change, though things will never ever be the same, you will have moments when you can breathe, you will have moments of clarity and thankfulness....Savor those moments because when the grief-tide washes over, it will almost take you with it. You are able to do way more than you ever knew humanly possible. You are. I miss my Avery so much I physically ache for her and the thought of living the rest of this life without her literally takes my breath away. But to know she is pain-free, happy, well, perfect, and with Jesus...That's all a mother could want for her child. I always prayed that she would grow up to be a Godly child, that people would be drawn to Jesus through her. I prayed this before she was born, I prayed this once she was with us, and I still pray that now. Her story isn't over. I have to live, for her.
September 26, 2015
Grief is...
Grief is personal. Grief is ever-changing. Grief washes over you and nearly takes you with it. Grief subsides long enough for you to breathe. Grief is a happy weekend reminding me that you should be here. Grief is a sad, lonely visit to 'see' you. Grief is laughing and grief is tears. Grief is inevitable when this human being that came from you is no longer on the same side of heaven as you. Grief shouldn't be happening right now. Grief is ugly, cruel, smothering... But it reminds me of the immense love we were blessed with for 8 months and 1 day. A perfect soul came into this world, made us mommy and daddy, and is now living perfectly with Jesus. We grieve... But we also rejoice.
September 5, 2015
Please forgive me...
I know I'm not the same person I was before May 3. If we're being honest, I know I'm not the same person I was before December 29. Before December 29, I was the happiest I have ever been in my entire life. I was a mother to an almost 4 month old beautiful, funny, snuggly little girl with the bluest, most perfect eyes and widest, happiest smile.
Everyone always told me that our lives were going to be forever changed with a child and that we would feel a kind of love we've never felt before. Every bit of that was spot on.
We lost our girl, as we knew her, on December 29. The amount of love that you have for this tiny human means the equivalent amount of pain and hurt that you feel when they are suffering. The love is indescribable...The pain is indescribable. Half of my baby's life was spent suffering. That changes you, as a parent... As a person. I am at a place in this journey right now that I can't even look at pictures or think about the things that she endured from December 29-May 3. It hurts so bad. I hurt for her. I hurt because there was nothing that I could do to take away her pain. Literally all we could do was make the best decisions for her and love her. And oh how we loved her. It wasn't until Avery that I truly felt like I had a purpose. She gave my life purpose.
She gave me so much. She gave me strength that I never knew I had, she taught me a totally new kind of love, she showed us all what is truly important. I know that Jesus was working through her. I would choose my Avery Marie a million times over, if I had that chance. You see, when someone comes into your life and makes such an impact, you become a different person, for the better. When that same person leaves this life, you also become a different person. It's inevitable. Please forgive me for not being the same person I used to be...
I'm stronger, yet most of the time I feel weaker. I'm more patient, yet at times I feel I have no patience. I'm more giving, but find I don't have time for negativity. I have a new focus on what's important and honestly get annoyed and offended by some people's issues. I know, it's probably not right, but when you've had to watch your child fight for her life, someone complaining about silly, mundane things easily annoys you. So please forgive me if I don't have the capacity to listen to these problems. It's not you, I literally just don't have it in me.
Please forgive me for not being the same friend that was always laughing. Yes, I am trying my absolute hardest to be happy, trust me. I want to be happy. Please forgive me for not reaching out to you the way I used to, the way I know I should be. I am still here for you. Please forgive me for not wanting to stay busy with (what should be) fun activities when the weekends come, I am mentally and physically exhausted. All the time. As much as I would love to change things, if I did then it would mean I also wouldn't have known all of the amazing blessings that came from Avery. And please forgive me, but I wouldn't have traded her for the world.
August 26, 2015
"When You don't give the answers as I cry out to You... I will trust, I will trust, I will trust in You."
I'm exhausted.
The past few weeks have felt like such a cloudy fog. I've started back to work... I know God has put me exactly where I need to be and I pray every day that I can be a blessing to my students and that I can learn from them just as much as they learn from me.
I've had several moments that I'm literally breathless because it hits me like a ton of bricks that life isn't as it should be. I should have an almost 1 year old to go home to after work.. or better yet, I should still be at home with her. I'm trying to go through these steps in this next phase of life as best I can but good grief (no pun intended) it's hard.
I think 'bittersweet' could be the most felt feeling... EVERYTHING is bittersweet. Everything. I ache to the core missing my baby. I hurt trying to find how to comfort Brad. I want to carry on with friends like we used to, but its just not possible. I literally don't have the capacity in me to care for much more than myself and Brad. I hurt for our families though. They are dealing with life without their granddaughter and niece. She was a living, breathing human being and now she's gone. I don't know if my head will ever wrap all the way around that.
The longer it goes, the harder its getting for me. I could try to explain all the reasons why but I don't think I could put these feelings into words. It just is. There's something that doesn't settle right with me about stopping by the cemetery after a day with your students to visit your baby. Don't know if it ever will. But I go and I talk to her and tell her how much I miss her and that "momma's here, sweet girl". In a weird way, I don't ever want Avery to feel alone...I know she isn't, I know she is surrounded by so many beautiful angels and the most precious Lord and Savior but I'm her mommy. She needs her mommy. I need her.
I know that my girl couldn't be healed on this side of Heaven and she is where her soul needs to be. I continue to learn so much from her and am so thankful that little chunky 8 month old left a remarkable imprint on our hearts the way only she could. I have learned more about God's grace and love for us than I ever knew I needed to.
So while I'm completely exhausted in every way, I am so blessed.
August 17, 2015
A letter to the bereaved parent with another new season upon them
I get it. A new season (or chapter) now sucks. It used to be a time of renewal, excitement, anticipation... A time that you looked forward to. A new beginning. Maybe it was a new job, a new relationship, a new home, a new opportunity, a new year, a new holiday season...these were all things that I would have been excited about 'before'. It was kind of like starting over in a sense, in what ever area it was in. And who doesn't like a fresh start?
Now, these new seasons and chapters are filled with anxiety. Anxiety about having to meet new people at your new job, to put on a happy face, to tell your story (because you know it's going to come out, as it should, your baby very much existed and gave your life purpose). New seasons are also reminders for me that my baby isn't with me. She isn't doing life with me on this side of Heaven. She isn't going to be here to participate in our silly family Christmas festivities. She won't be turning a year old here on Earth.
It just hurts. It hurts to the core and I've realized it isn't a feeling that can be described. It is an experience that we are living every single day. I'm almost to the point that I don't want people to try to understand because they wont. They can't. All that they need to understand is that we need them now more than ever. And maybe in a few months more than now. We need people to cry for us when we can't cry another tear, pray for us when we can't catch our breath to pray, and just 'be'. People don't understand the impact that their presence has on someone who couldn't feel more alone... All because this precious tiny human isn't here any more. We need people who will just listen... Listen to us talk about our child. Listen to our frustrations. Listen to our questions. If you've found someone who doesn't want to hear about it anymore, let them go. There are so many precious souls who will listen to you. We will never 'get over it'. Ask them how many times a day they think about their living child and them ask them to not. It's impossible.
I pray that any new season, chapter, or beginning will take on a new meaning for you. I am wholeheartedly going to approach these times as a positive. Yes, we will cry. We are sad. But we can also smile at the impact that our precious one has made. I am realizing more and more every single day all the ways that my Avery blessed us and changed us and left us with things that we will have forever, until we see her again. My heart grew 1,000 times when I met and loved her. I now have so much love to give. She made me see how brave I am. I've done things in the last 8 months that I never ever thought I'd be able to do. Imagine what I'm capable of now. I pray that I will teach my students lessons that go way past the textbooks or curriculum. Avery taught me so many. I am realizing that there is a love, a happiness, a kind of joy that you can only experience after sorrow. So I look at these new seasons in anticipation for that very joy. I pray you can too.
I cry as I write this. I cry at the fact that there are so many others hurting the way we hurt. Please remember your child in your new season and smile... Smile because there is so much beauty that is going to come.
I have to believe this.
Now, these new seasons and chapters are filled with anxiety. Anxiety about having to meet new people at your new job, to put on a happy face, to tell your story (because you know it's going to come out, as it should, your baby very much existed and gave your life purpose). New seasons are also reminders for me that my baby isn't with me. She isn't doing life with me on this side of Heaven. She isn't going to be here to participate in our silly family Christmas festivities. She won't be turning a year old here on Earth.
It just hurts. It hurts to the core and I've realized it isn't a feeling that can be described. It is an experience that we are living every single day. I'm almost to the point that I don't want people to try to understand because they wont. They can't. All that they need to understand is that we need them now more than ever. And maybe in a few months more than now. We need people to cry for us when we can't cry another tear, pray for us when we can't catch our breath to pray, and just 'be'. People don't understand the impact that their presence has on someone who couldn't feel more alone... All because this precious tiny human isn't here any more. We need people who will just listen... Listen to us talk about our child. Listen to our frustrations. Listen to our questions. If you've found someone who doesn't want to hear about it anymore, let them go. There are so many precious souls who will listen to you. We will never 'get over it'. Ask them how many times a day they think about their living child and them ask them to not. It's impossible.
I pray that any new season, chapter, or beginning will take on a new meaning for you. I am wholeheartedly going to approach these times as a positive. Yes, we will cry. We are sad. But we can also smile at the impact that our precious one has made. I am realizing more and more every single day all the ways that my Avery blessed us and changed us and left us with things that we will have forever, until we see her again. My heart grew 1,000 times when I met and loved her. I now have so much love to give. She made me see how brave I am. I've done things in the last 8 months that I never ever thought I'd be able to do. Imagine what I'm capable of now. I pray that I will teach my students lessons that go way past the textbooks or curriculum. Avery taught me so many. I am realizing that there is a love, a happiness, a kind of joy that you can only experience after sorrow. So I look at these new seasons in anticipation for that very joy. I pray you can too.
I cry as I write this. I cry at the fact that there are so many others hurting the way we hurt. Please remember your child in your new season and smile... Smile because there is so much beauty that is going to come.
I have to believe this.
August 10, 2015
"Tune my heart to sing thy Grace..."
Our counselor told us that this first year would be hard...all of the 'firsts' that we will have to encounter... First birthday, first Thanksgiving, first Christmas, first Easter....without you. But who are we kidding, no holiday is ever going to be easy. Ever. From here on out. I'm sorry, family and friends. I know you may also have a moment of sadness yourselves (and/or for us) but please don't ever underestimate the feeling of loneliness we will feel, even surrounded by so many that we love. We are getting closer and closer to your first birthday. I struggle every single month on the 2nd and the 3rd. On the 2nds, you would be another month older. In a few weeks, you would be 1 year old. I still sit hear in disbelief that I would have a 1 year old. On the 3rds, it is another month that you've been gone. Sundays are hard too. That's the day you took your last breath and went home. It's bittersweet having all of these daily reminders and dates that mark another 'should've been' or 'would've been'. I never want you far from my mind but I also hate the reminders that you aren't here, where you should be. Avery lived to be 8 months and 1 day old. She fought until the end. She went until her little body knew it couldn't be healed on this side of Heaven. I rejoice every single day that she has won and she is whole and well and PERFECT but oh how I hurt. I don't tell you all of this for pity or sadness, I tell you to 1) keep Avery as alive as I possibly can, 2) try to cope with an unfathomable loss, 3) help others understand, we all have a story to tell, and 4) continue rejoicing in the love that can only come from a Father who is holding my precious baby. As Avery's mom, I prayed for her before she was born, I prayed for her every day she was with us, and I pray for her now. As a mom, you are given this amazing strength to do things you never thought you could do and an even more amazing power to love so deeply that you know it comes straight from above. We hurt so bad because we love so good. We miss you, our Avery girl.
August 6, 2015
We aren't alone.
Last night was big... We met other couples who have also lost a child.. We grieved together. We remembered together. We were honest and transparent together. We shared pictures. We saw the precious faces of our babies in a different way. It felt so good. Our angel's death was the most recent, but only by a few months. All six of us could almost finish the others' sentences. To be members of this 'bereaved parents' club is the worst possible club to be in but to have these other people as support is amazing. We can all learn a lot from one another because it's going to be a lifelong change that's should really be called a lifelong nightmare. I won't go into details of our time together last night but I highly encourage anyone who is grieving to find others who can support you and truly understand you. For people who are trying to be the supporters, just be patient and please understand that literally every minute, every hour, every day is a struggle. Nothing will ever be the same. We smile and try to carry on because that's what we need to do. But know that inside we are empty, breathless, and feeling swallowed by the overwhelming feeling of sadness that comes with your child being in Heaven and you being left here on Earth. I am the most grateful for the hugs, genuine prayers, and simple calls and text messages just letting me know they're thinking about me and sharing a thought about Avery.
I also just want to add... Please don't forget the families of the lost children. They also lost a piece of themselves.. A neice or nephew, a grandchild, a cousin. Pray for them and support them as well.
My hope is that we can create a community that truly and genuinely supports, encourages, prays for, and is patient with the families of people hurting. It's a scary place to be. It's traumatic. We have felt so much love but please don't stop. You can't stop. You've literally carried us through days that we can't even recall details of because of being swept under by the waves.
"Love the Lord your God with all your soul, with all your strength, with all your might. The second is this: Love your neighbor as yourself. There is no greater commandment than these." Mark 12:30-31
I also just want to add... Please don't forget the families of the lost children. They also lost a piece of themselves.. A neice or nephew, a grandchild, a cousin. Pray for them and support them as well.
My hope is that we can create a community that truly and genuinely supports, encourages, prays for, and is patient with the families of people hurting. It's a scary place to be. It's traumatic. We have felt so much love but please don't stop. You can't stop. You've literally carried us through days that we can't even recall details of because of being swept under by the waves.
"Love the Lord your God with all your soul, with all your strength, with all your might. The second is this: Love your neighbor as yourself. There is no greater commandment than these." Mark 12:30-31
July 22, 2015
It's not our plan, but His. (right?)
Oh man, if I had a nickle every time I had a thought similar to "What? Where is Avery?" or "How is this real life?" or "Am I really visiting my baby in a cemetary?" I'd be rich. It is still unreal. I think more unreal now than it was two months ago. Now, time has started to pass and day to day life doesn't consist of medicines being drawn up and given, feeding pump beeps, diapers, a heart-wrenching cry, and more than any of this, our Avery. How can a parent ever stop missing their child? How am I supposed to not think about her? How am I going to get through her birthday every year? How can I not look at Paisley and see Avery?
As a fresh college graduate, you don't see these things in your future. You don't plan on losing your first born after a terrible 3 month hospital stay. I say 'as a fresh college graduate' because that's who I think of when I think of really starting to "plan for the future". You've got the world at your fingertips. Friends are starting to get married and vacations are happening. New jobs are being found, new houses are being bought. I can remember as a new graduate, Brad and I talking about our futures... We would live at the farm house for a little while to save some money, we would start working our grown up jobs, and one day when we were ready and things were just right, we would start a family. A boy first, because then he could protect the younger sister. (As if we have ANY control over what we have...) The boy would have bleach blond hair just like Brad did when he was a kid. We were going to do so many fun things as a family... Beach trips were going to be the best.
So to say that life hasn't gone as planned is quite an understatement. But something I've learned is that there are few things that we can really plan. I've heard more times than I would've cared to that "it's all part of God's plan..." No. No, I'm sorry but I don't agree with you there. I have a hard time believing that God wanted my baby to suffer. I have a hard time believing that God wanted her life to be cut entirely too short. I have a hard time believing that He wanted us to hurt and experience the worst thing parents can experience. I absolutely believe miracles happen. And I also believe that as human beings living in a imperfect world, bad things happen. Never have I once thought that God made Avery die. I believe God knew the path Avery's life was going to take and He hurts right along with us. He understands our hurt. What I believe is that through our hurt and Avery's suffering, an amazing testament can be told. I know that without our Avery, we would've never known this kind of love. We wouldn't be able to share the goodness and graciousness and comfort that our Father gives us daily and gave us during our time of need. I don't know what I would've done without the love of Jesus surrounding us. He showed us this love through family, friends, the medical community, and even strangers. My life has new meaning... All because of God's love shining so brightly through Avery. I know that He is making something beautiful from these ashes.
As a fresh college graduate, you don't see these things in your future. You don't plan on losing your first born after a terrible 3 month hospital stay. I say 'as a fresh college graduate' because that's who I think of when I think of really starting to "plan for the future". You've got the world at your fingertips. Friends are starting to get married and vacations are happening. New jobs are being found, new houses are being bought. I can remember as a new graduate, Brad and I talking about our futures... We would live at the farm house for a little while to save some money, we would start working our grown up jobs, and one day when we were ready and things were just right, we would start a family. A boy first, because then he could protect the younger sister. (As if we have ANY control over what we have...) The boy would have bleach blond hair just like Brad did when he was a kid. We were going to do so many fun things as a family... Beach trips were going to be the best.
So to say that life hasn't gone as planned is quite an understatement. But something I've learned is that there are few things that we can really plan. I've heard more times than I would've cared to that "it's all part of God's plan..." No. No, I'm sorry but I don't agree with you there. I have a hard time believing that God wanted my baby to suffer. I have a hard time believing that God wanted her life to be cut entirely too short. I have a hard time believing that He wanted us to hurt and experience the worst thing parents can experience. I absolutely believe miracles happen. And I also believe that as human beings living in a imperfect world, bad things happen. Never have I once thought that God made Avery die. I believe God knew the path Avery's life was going to take and He hurts right along with us. He understands our hurt. What I believe is that through our hurt and Avery's suffering, an amazing testament can be told. I know that without our Avery, we would've never known this kind of love. We wouldn't be able to share the goodness and graciousness and comfort that our Father gives us daily and gave us during our time of need. I don't know what I would've done without the love of Jesus surrounding us. He showed us this love through family, friends, the medical community, and even strangers. My life has new meaning... All because of God's love shining so brightly through Avery. I know that He is making something beautiful from these ashes.
July 16, 2015
I want to remember. I need to remember...
Your little fingers..your little toes..your perfect lips and nose. I want to remember it all. I need to remember it all. I look at pictures because they are all I have.
It is amazing (and by amazing I mean frustrating) how the things that I want to NEVER forgot somehow find a way to start looking foggy in my mind and the terrible things that I would love to never think about again won't leave my mind. When I close my eyes, I can feel your little body curled up in my arms, the way you nestled right in so comfortably that just melted this momma's heart. When I look at your pictures of that beaming wide-mouthed smile, I can hear you cooing and laughing, remembering how it just made our whole day to have our baby look up at us with such love. When I walk into your nursery, I can still smell diapers, blankets and clothes washed in baby detergent (yes, it has a different smell than Tide), and I pray these smells never go away. It's funny how smells have a way of bringing memories rushing back. I've had one friend come into my house and simply say, "It smells like Avery in here..." I know what ya mean...I am beginning to realize that all of the beautiful pictures that I have are all the pictures that I'll ever have of you, making them more and more precious every single day. I look at these pictures so often, trying to burn into my memory (if that's possible) every detail of your sweet face, the unique little ways you held your hands, the curves of your feet. I don't want to forget any of it. I can't forget any of it. It seems like a lifetime ago that life was so simple. We had our routine (and oh it was glorious). Morning nursing around the time daddy was going to work, then snuggles in momma's bed (you always seemed to get your best sleep during that early morning 'nap'), then a good 'ol diaper change. Insert many smiles and wiggles. You loved when we would pass by a mirror and I'd sing "Who's that girl? Oh that girl...." It was no nursery rhyme but it got you smiling. The days went on as simple as this and I soaked in every minute. I still think about what the pastor said at your service, that you were loved every minute of your life. What a blessing. How can we want anything more for our child? Thank you for loving us. You are my greatest accomplishment and deepest love. And now you're being held by our Lord and Savior until momma can hold you again. What a perfect life.
July 9, 2015
Dear Avery,
Oh sweet girl, momma misses you. We are trying to get through life without you and enjoy time with family and make memories but it's almost impossible. Life is dull now. It's family vacations that make me think of the 'should'ves. When I look at other babies, I wonder how old they are. I wonder what you would be doing if you were with us, where you should be.
I love you my sweet angel girl.
Mommy
Oh sweet girl, momma misses you. We are trying to get through life without you and enjoy time with family and make memories but it's almost impossible. Life is dull now. It's family vacations that make me think of the 'should'ves. When I look at other babies, I wonder how old they are. I wonder what you would be doing if you were with us, where you should be.
I love you my sweet angel girl.
Mommy
July 6, 2015
Still blessed...
I'll be the first to admit that there are days that I look around, am surrounded by so many wonderful people, things, memories.... And I don't feel blessed like I know I should. Like I know I am. Sometimes it's hard to feel blessed when your child.. Your baby... Isn't here on Earth with you. It still makes absolutely no sense to me how such a thing could happen. It's been two months without the most precious gift I've ever been given...
People throw around the word 'blessed' way too much, in my opinion...for example, when good things are happening for them, they're blessed. It always seems it's during positive times that people are 'blessed'. I can honestly say I have never felt more blessed in my life than I have right now and going through the awful 6 months prior. I know I said sometimes I look around and don't feel blessed, but I've learned that through this journey of grief, we have moments, hours, days of just not feeling it. We know it's just part of this journey, we aren't going to be happy all of the time and maybe it's hard for us to appreciate all that we have when the most important thing to you is gone. But oh are we blessed.
We have seen the good in people in a way that was unknown to us before... We have learned a deeper kind of love... We have found out how strong you can be as a parent and went to those limits, we have learned to fully.. And I mean fully rely on God. All of these things might not have ever happened without the last 6 months happening. I will not say that Avery's short little precious life ended so that these things would happen but I believe our God cries with us and hurts with us because He truly knows our hurt. I believe that He didn't want this to happen to our sweet girl. I believe that it's how you deal with situations that makes you who you are. He has been my source of strength and will continue to be because, well, there is no other way.
We hurt so because we were and are blessed. We were blessed with Avery's precious smile, her laugh, her will to live when the odds were stacked against her. We were blessed with 4 amazing months with a happy, perfect baby. We were blessed with 4 more very different months that gave us time to snuggle, care for, and love our sweet girl. We were blessed beyond measure when God gave us Avery.
So today, as much as I hurt, I can say I am blessed.
June 27, 2015
Wish List for Bereaved Parents
When I saw this list and read through it, I felt like it so perfectly listed all of the things that a grieving parent wants to say. For anyone who knows someone who has lost a child, a friend, a family member, I encourage you to read through this to help you better understand. Loss is hard. Asking for help is hard. Don't 'stay out of the way'... yes, sometimes (just yesterday) I didn't want to speak to anyone...But some days, I long for a close friend to rescue me...not to distract me but to remind me I'm not doing this alone. I pray this will help someone.
(This list was found on Bereaved and Blessed)
Read more: http://bereavedandblessed.com/resources-links/wish-list-for-bereaved-parents/#ixzz3eJ2JgLQg
(This list was found on Bereaved and Blessed)
I wish my child hadn’t died. I wish I had her back.
I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that she was important to you also.
If I cry and get emotional when you talk about my child I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears.
You have talked about my child, and you have allowed me to share my grief. I thank you for both.
I wish you wouldn’t “kill” my child again by removing her pictures, artwork, or other remembrances from your home.
Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you now more than ever.
I need diversions, so I do want to hear about you; but, I also want you to hear about me.
I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.
I know you think of and pray for me often. I also know that my child’s death pains you, too.
I wish you would let me know those things through a phone call, a card, note, or a real big hug.
I wish you wouldn’t expect my grief to be over in a short period of time. I wish you could understand that my grief will never be over.
I will suffer the death of my child until the day I die. Grief is a life long process.
I am working very hard in my recovery, but I wish you could understand that I will never fully recover.
I will always miss my child, and I will always grieve that she is dead.
I wish you wouldn’t expect me “not to think about it” or to “be happy.” Neither will happen for a very long time, so don’t frustrate yourself.
I don’t want to have a “pity party”, but I do wish you would let me grieve. I must hurt before I can heal.
I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.
When I say “I’m doing okay”, I wish you could understand that I don’t “feel” okay and that I struggle daily.
I wish you knew that all of the grief reactions I’m having are very normal.
Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when
I’m quiet and withdrawn or irritable and cranky.
Your advice to “take one day at a time” is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I’m doing good to handle an hour at a time.
Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.
I wish you understood that grief changes people. When my child died, a big part of me died with her. I am not the same person I was before my child died, and I will never be that person again.
I wish very much that you could understand my loss and grief, my silence and my tears, my void and my pain. BUT…I pray daily that you will never understand.
Read more: http://bereavedandblessed.com/resources-links/wish-list-for-bereaved-parents/#ixzz3eJ2JgLQg
June 26, 2015
Summertime and the livin's (not) easy.
This summer was going to be oh so much fun. You were going to learn to walk, we would celebrate your first birthday, we would go to the beach and play in the sand, we would play outside, go on walks....
You were robbed of so much. I'm so sorry baby girl. There is nothing more that I wish for every single day than to have you back and for you to experience these things. Your daddy and I try to stay busy with day to day tasks but at some point, the grief has to come out. For me, usually it's in the mornings...For several hours... I have to let it just take over. Some days, it's later in the evenings. When it comes, it comes with no holding back. So I look at your pictures that are everywhere...on the walls, on nightstands, on tables, on counters...everywhere. Your sweet smiles (still) light up every single room. As it should be. You're here with us, I just know it.
We miss you more and more every day...Love you my sweet angel girl.
You were robbed of so much. I'm so sorry baby girl. There is nothing more that I wish for every single day than to have you back and for you to experience these things. Your daddy and I try to stay busy with day to day tasks but at some point, the grief has to come out. For me, usually it's in the mornings...For several hours... I have to let it just take over. Some days, it's later in the evenings. When it comes, it comes with no holding back. So I look at your pictures that are everywhere...on the walls, on nightstands, on tables, on counters...everywhere. Your sweet smiles (still) light up every single room. As it should be. You're here with us, I just know it.
We miss you more and more every day...Love you my sweet angel girl.
June 25, 2015
A little background that led us to being bereaved parents...Pt.6
In the week following Avery's death, we were surrounded by so much love and prayer and held a beautiful, perfect Celebration of Life for our sweet angel.
May 9, 2015
I see you sweet girl, I see you. We have been so surrounded with love that it's overwhelming. Our house (mostly the porch) is filled with the sweetest smelling flowers that will give us beautiful blooms every single year. We have received countless cards simply saying you are praying for us. We are reminded every day of little (and big) ways that Avery touched our lives. And this weekend, I am reminded that Avery made me a mother and I will always be a mother, no matter where else life leads us. Who else can live on earth and not sin but an angel? We had an angel and are so grateful He trusted us with her.
May 9, 2015
I see you sweet girl, I see you. We have been so surrounded with love that it's overwhelming. Our house (mostly the porch) is filled with the sweetest smelling flowers that will give us beautiful blooms every single year. We have received countless cards simply saying you are praying for us. We are reminded every day of little (and big) ways that Avery touched our lives. And this weekend, I am reminded that Avery made me a mother and I will always be a mother, no matter where else life leads us. Who else can live on earth and not sin but an angel? We had an angel and are so grateful He trusted us with her.
May 24, 2015
Three weeks ago. It still seems unreal. I have come to realize that I don't think I'll ever understand how you can be blessed with something so perfect for such a short amount of time and then just like that, it's gone. The pain of missing this sweet angel is almost unbearable at times. I know we will learn to live again but it just doesn't feel right without our Avy Baby. Please continue to pray for peace for our family... Not only was Avery our sweet baby, she was also a niece, cousin, and a granddaughter.
Three weeks ago. It still seems unreal. I have come to realize that I don't think I'll ever understand how you can be blessed with something so perfect for such a short amount of time and then just like that, it's gone. The pain of missing this sweet angel is almost unbearable at times. I know we will learn to live again but it just doesn't feel right without our Avy Baby. Please continue to pray for peace for our family... Not only was Avery our sweet baby, she was also a niece, cousin, and a granddaughter.
May 31, 2015
It's been 4 weeks. 4 of the longest weeks of my life. There should be one more sweet girl in this picture. So thankful for these people, they are part of the group that have been our rock since day 1. It is so bittersweet making memories with only 2/3 of our little family here. What I would give for one more snuggle. Avery taught us a new kind of love that I am forever grateful for.
It's been 4 weeks. 4 of the longest weeks of my life. There should be one more sweet girl in this picture. So thankful for these people, they are part of the group that have been our rock since day 1. It is so bittersweet making memories with only 2/3 of our little family here. What I would give for one more snuggle. Avery taught us a new kind of love that I am forever grateful for.
June 8, 2015
"Loved". That is one thing that was so true of Avery. She was loved. She is still loved. I began writing in this journal on December 23, 2013, the day I found out I was pregnant. The day our worlds were forever changed. The day that began our fierce love for someone that we hadn't even met. The day that we truly began living for someone else. And I write in it today. The topic has always been Avery, the details are just different. In December and the months to follow, I wrote about all of the joy and excitement we had, that everyone had, knowing she was on her way. I wrote about the process of preparing our home to welcome her into it. I wrote about how our love for her grew even more once we had decided on a name, Avery Marie. Now, I write about how much we miss her. How grief takes over like an ocean wave, trying to pull you under, then passes when it's ready, whether it's after ten minutes or two hours. I write about the 'what ifs'... What it would be like if we had a happy, healthy 9 month old. What would she sound like? Interact like? Crawling? (Probably, and probably all over the place) I think it's normal to wonder these things and long for her presence but oh how it hurts. I struggle with how much I want to share.. Part of me feels like it is my job to keep her story alive.. Maybe I can help someone else. Maybe her story of strength and love will reach someone and lead them to Jesus. Maybe it's my selfish way of not wanting her to go away. I don't know. Maybe I'll never know. Our hearts were forever changed because of her and I know she's not finished. So please bare with me as I continue to tell her story. Maybe it's part of my healing process. Again, I don't know. But there is just too much good that can continue to come from this to not share. Children are special. They are truly God-sent. They can all teach us a thing or two, we just have to watch and listen.
"Loved". That is one thing that was so true of Avery. She was loved. She is still loved. I began writing in this journal on December 23, 2013, the day I found out I was pregnant. The day our worlds were forever changed. The day that began our fierce love for someone that we hadn't even met. The day that we truly began living for someone else. And I write in it today. The topic has always been Avery, the details are just different. In December and the months to follow, I wrote about all of the joy and excitement we had, that everyone had, knowing she was on her way. I wrote about the process of preparing our home to welcome her into it. I wrote about how our love for her grew even more once we had decided on a name, Avery Marie. Now, I write about how much we miss her. How grief takes over like an ocean wave, trying to pull you under, then passes when it's ready, whether it's after ten minutes or two hours. I write about the 'what ifs'... What it would be like if we had a happy, healthy 9 month old. What would she sound like? Interact like? Crawling? (Probably, and probably all over the place) I think it's normal to wonder these things and long for her presence but oh how it hurts. I struggle with how much I want to share.. Part of me feels like it is my job to keep her story alive.. Maybe I can help someone else. Maybe her story of strength and love will reach someone and lead them to Jesus. Maybe it's my selfish way of not wanting her to go away. I don't know. Maybe I'll never know. Our hearts were forever changed because of her and I know she's not finished. So please bare with me as I continue to tell her story. Maybe it's part of my healing process. Again, I don't know. But there is just too much good that can continue to come from this to not share. Children are special. They are truly God-sent. They can all teach us a thing or two, we just have to watch and listen.
June 9, 2015
Today, I miss the smell of diapers. Going through and trying to organize things in Avery's nursery brought on some major tears.
Today, I miss the smell of diapers. Going through and trying to organize things in Avery's nursery brought on some major tears.
Looking back through our hospital notebook, I had written down this verse that brings so much peace to me today. At the time, we were waiting to find out what test would be done that would be the least risky and most beneficial for showing exactly what Avery's heart needed. Today, I needed to be reminded that she is whole and well and happy. The Lord must've known that I'd need that reassurance again.
June 15, 2015
I adore my niece. I have since the day she was born. I loved that Avery and Paisley were going to grow up together, so close in age. Now, I love that Paisley remembers 'baby'... Oh man the dreams I had for the two of them together; what a fun summer it was going to be. I am so so thankful that we have Paisley. The Lord does some amazing work through these unknowing kids and it just fills my heart with so much happiness. Today, we ate popsicles, played in the sprinkler, colored, read books, snuggled, giggled, and missed Avery. I pray that Paisley always remembers her baby cousin because I know Avery would've adored her just as much as we do.
I adore my niece. I have since the day she was born. I loved that Avery and Paisley were going to grow up together, so close in age. Now, I love that Paisley remembers 'baby'... Oh man the dreams I had for the two of them together; what a fun summer it was going to be. I am so so thankful that we have Paisley. The Lord does some amazing work through these unknowing kids and it just fills my heart with so much happiness. Today, we ate popsicles, played in the sprinkler, colored, read books, snuggled, giggled, and missed Avery. I pray that Paisley always remembers her baby cousin because I know Avery would've adored her just as much as we do.
June 16, 2015
Oh how my body physically aches to hold you. You took a piece of me with you and I won't be whole until we are together again, where you should be, in your momma's arms. You were 1 week into your little life here and I literally sat with you and stared at your perfection of a smile all. day. long. Well, in between diapers and nursing. I wouldn't have traded one sleepless night for anything. Life just isn't as sunny without you. It never will be. I love you, my sweet angel.
Oh how my body physically aches to hold you. You took a piece of me with you and I won't be whole until we are together again, where you should be, in your momma's arms. You were 1 week into your little life here and I literally sat with you and stared at your perfection of a smile all. day. long. Well, in between diapers and nursing. I wouldn't have traded one sleepless night for anything. Life just isn't as sunny without you. It never will be. I love you, my sweet angel.
June 19, 2015
Never. So much was lost in that moment. A precious life, birthdays, holidays, graduations, a wedding, everything you dream of for your child. It just shouldn't happen. While our hearts seem to break a little more each day, I know our angel is well and whole. How special that she gets to experience our ultimate goal in life.. Heaven. Exactly one year ago, I wrote about how we had picked her name, Avery Marie, how we had seen her sweet face on the ultrasound, how thankful I was for every kick and roll that I was feeling. I will continue to write about her, I've found it to be healing. We have a lot to learn about grieving... I won't call it a process, because theres no end to it. We are forever changed. I am determined that we will become stronger as we continue through life, not just get back to where we were. We have a lot to learn from other people... I pray that in time, we will be able to help someone, give perspective, and truly help people realize what matters. I absolutely love hearing people talk about Avery.. Yes, it stings to hear her name, but oh it brings so much joy.
Never. So much was lost in that moment. A precious life, birthdays, holidays, graduations, a wedding, everything you dream of for your child. It just shouldn't happen. While our hearts seem to break a little more each day, I know our angel is well and whole. How special that she gets to experience our ultimate goal in life.. Heaven. Exactly one year ago, I wrote about how we had picked her name, Avery Marie, how we had seen her sweet face on the ultrasound, how thankful I was for every kick and roll that I was feeling. I will continue to write about her, I've found it to be healing. We have a lot to learn about grieving... I won't call it a process, because theres no end to it. We are forever changed. I am determined that we will become stronger as we continue through life, not just get back to where we were. We have a lot to learn from other people... I pray that in time, we will be able to help someone, give perspective, and truly help people realize what matters. I absolutely love hearing people talk about Avery.. Yes, it stings to hear her name, but oh it brings so much joy.
A little background that led us to being bereaved parents...Pt.5
Mar. 11, 2015
Most of you don't realize what a huge deal this is, but today this momma was brought to tears, happy tears! Avery lost her sucking reflex (hence the feeding tube) and therapy has been working with her trying to get that back. Well, today (in her own timing, of course!) she started sucking just like she has never missed a beat. This is such a big accomplishment that with hopefully continue to improve so we can return to bottle feeding with her. I've heard more times than I can count that kids are resilient and of course I cling to that but this was exactly what I needed today. Avery has got so many barriers to overcome but baby, this was one of them! Thank you Jesus!
Most of you don't realize what a huge deal this is, but today this momma was brought to tears, happy tears! Avery lost her sucking reflex (hence the feeding tube) and therapy has been working with her trying to get that back. Well, today (in her own timing, of course!) she started sucking just like she has never missed a beat. This is such a big accomplishment that with hopefully continue to improve so we can return to bottle feeding with her. I've heard more times than I can count that kids are resilient and of course I cling to that but this was exactly what I needed today. Avery has got so many barriers to overcome but baby, this was one of them! Thank you Jesus!
Mar. 16, 2015
Avery is (slowly) adjusting to being home. She is getting better and better at her sucking, handling movement and transitions better, and calming quicker, for the most part. We are so happy with her new pediatrician, which is a huge thing! Avery actually gained too much weight over the last week. This has never happened for us! Poor angel, she's come so far, I'm just so proud of her. (And I tell her every single day ❤)
Avery is (slowly) adjusting to being home. She is getting better and better at her sucking, handling movement and transitions better, and calming quicker, for the most part. We are so happy with her new pediatrician, which is a huge thing! Avery actually gained too much weight over the last week. This has never happened for us! Poor angel, she's come so far, I'm just so proud of her. (And I tell her every single day ❤)
We have soooo many thank you notes that we owe to more people than we can count. (I'm working on them...) So here goes a long list of thank yous...
Every single day, we are shown how blessed we are by cards, gifts, money, meals, fundraisers, and prayers. The meals have been ah-mazing... Seriously, we can taste the love. The generosity of people that just want to give so that Avery has whatever she needs is still overwhelming. Everyone's support at community fundraisers has been incredible! We regret we couldn't make it out to Randy's tonight to thank everyone. So thank you! Thank you for your time and hard work that you put into these fundraisers and thank you for supporting sweet Avery. And thank you for the sweet cards that tell us you're praying for us and you love us. It all means the world.
We are also eternally grateful to the amazing medical team at Brenner's who genuinely care about her progress. I know it's your job and you are just doing what you are trained to do but thank you. Thank you for caring about Avery. Thank you for growing attached to her. Thank you for helping Brad and I get through each day. You literally saw us at our worst and you still talked to us and gave us hugs. 😳 We really do miss you guys.
We've got a big weekend coming up with my sister's wedding and I would love nothing more than for us to go as a family of three but it'll be just Brad and I. These moments are when I wish I could go back to our perfect little normal life three months ago. But we are blessed. So blessed.
We love you, our angels.
Mar. 25, 2015
Taking a 'whaley' good nap.
Taking a 'whaley' good nap.
April 6, 2015
We all knew she probably wouldn't like us trying to put this Easter bunny coat on her but it was pretty sweet. Bless her little heart. I have been reminded several times (there are no coincidences, momma says so) randomly that it's all about perspective. I try day in and day out to stay positive and see the good in our lives right now and I'll be honest, it's hard sometimes. We need to always look for God working in our lives because when you stop paying attention, you might miss it. We might not always get exactly what we pray for but when we pray for His will to be done, it is always perfect. That is my daily prayer. The good lord gave us this sweet gift for a reason and when we make our perspective that SHE is our purpose in life right now, the sleepless nights and the inconsolable times that just break a momma's heart are much more bearable. We have been blessed beyond measure and I KNOW that we would have never known this kind of love without going through such turmoil. I still pray every day that we will see our sweet one smile at us with that beautiful big smile. We would love nothing more. She will get there, in her own time, I just know it. We are constantly surrounded by so much love and I know she feels it.
We all knew she probably wouldn't like us trying to put this Easter bunny coat on her but it was pretty sweet. Bless her little heart. I have been reminded several times (there are no coincidences, momma says so) randomly that it's all about perspective. I try day in and day out to stay positive and see the good in our lives right now and I'll be honest, it's hard sometimes. We need to always look for God working in our lives because when you stop paying attention, you might miss it. We might not always get exactly what we pray for but when we pray for His will to be done, it is always perfect. That is my daily prayer. The good lord gave us this sweet gift for a reason and when we make our perspective that SHE is our purpose in life right now, the sleepless nights and the inconsolable times that just break a momma's heart are much more bearable. We have been blessed beyond measure and I KNOW that we would have never known this kind of love without going through such turmoil. I still pray every day that we will see our sweet one smile at us with that beautiful big smile. We would love nothing more. She will get there, in her own time, I just know it. We are constantly surrounded by so much love and I know she feels it.
April 27, 2015
Friends, I know we haven't had many updates recently but today we need prayers. Avery was admitted back in to the PICU today for an extremely high temp and labored breathing. Right now, the team is trying to determine the cause for the sudden temp. Please pray that our sweet angel is back to her sweet self soon.
Friends, I know we haven't had many updates recently but today we need prayers. Avery was admitted back in to the PICU today for an extremely high temp and labored breathing. Right now, the team is trying to determine the cause for the sudden temp. Please pray that our sweet angel is back to her sweet self soon.
May 2, 2015
We have been blessed with this sweet angel for 8 amazing months. While our days with her are limited we know she was put here to show us a new and amazing kind of love. Happy 8 months to the sweetest and prettiest girl in the whole wide world.
We have been blessed with this sweet angel for 8 amazing months. While our days with her are limited we know she was put here to show us a new and amazing kind of love. Happy 8 months to the sweetest and prettiest girl in the whole wide world.
May 3, 2015
We always knew our sweet girl was our angel but now she truly is dancing and smiling with Jesus. Our hearts break with this reality; 8 months just isn't long enough with your baby. From the moment I first met her I knew my world was forever changed. I never could've imagined I could love someone so deeply. We were blessed with the strongest, sweetest, most loving, funny, beautiful little girl any two people could ever pray for. Our hearts will always have a huge piece missing but to know we will see that smile again brings a lot of peace. Learning to live without our Avery is not going to be easy and I don't know if we ever will, but she made us mommy and daddy and taught us a love that we never knew before. We have been so surrounded with love and support the last 8 months and we are forever grateful. I think Avery could easily be the most loved little girl I've ever known. She is the lucky one to go before us and live without pain and we couldn't want anything more for our sweet angel. Thank you from the bottom of our hearts for all of the love, prayers, hugs, and support. Thank you for loving Avery. Please continue to pray for peace, comfort, and healing for our families. I cannot wait to hear that little giggle again.
We always knew our sweet girl was our angel but now she truly is dancing and smiling with Jesus. Our hearts break with this reality; 8 months just isn't long enough with your baby. From the moment I first met her I knew my world was forever changed. I never could've imagined I could love someone so deeply. We were blessed with the strongest, sweetest, most loving, funny, beautiful little girl any two people could ever pray for. Our hearts will always have a huge piece missing but to know we will see that smile again brings a lot of peace. Learning to live without our Avery is not going to be easy and I don't know if we ever will, but she made us mommy and daddy and taught us a love that we never knew before. We have been so surrounded with love and support the last 8 months and we are forever grateful. I think Avery could easily be the most loved little girl I've ever known. She is the lucky one to go before us and live without pain and we couldn't want anything more for our sweet angel. Thank you from the bottom of our hearts for all of the love, prayers, hugs, and support. Thank you for loving Avery. Please continue to pray for peace, comfort, and healing for our families. I cannot wait to hear that little giggle again.
A little background that led us to being bereaved parents...Pt.4
Feb. 22, 2015
It's been a relatively slow and uneventful past week. The biggest change has been in the weaning of Avery's medications. She's handling everything pretty well! She is gaining weight and we now have a chunky little monkey (she was never chunky before because she was burning more calories than she could take in. VSD fixed=baby gains weight) One of the things her team is discussing this week is the coarctation of her aorta (narrow arch) and if/when something needs to be done. As usual, we have heard too many different things, so we are praying for clarity and guidance for the doctors and surgeons who will be meeting to discuss her. We are continuing to work on her sucking and swallowing reflex so that she will be able to eat on her own, she is having to relearn this... If she's unable to gain that skill back, she will need a G-tube, which is definitely not the end of the world but it would be a surgery that she would have to be under anesthesia for and we would love to be able to avoid that, for her.
It's been a relatively slow and uneventful past week. The biggest change has been in the weaning of Avery's medications. She's handling everything pretty well! She is gaining weight and we now have a chunky little monkey (she was never chunky before because she was burning more calories than she could take in. VSD fixed=baby gains weight) One of the things her team is discussing this week is the coarctation of her aorta (narrow arch) and if/when something needs to be done. As usual, we have heard too many different things, so we are praying for clarity and guidance for the doctors and surgeons who will be meeting to discuss her. We are continuing to work on her sucking and swallowing reflex so that she will be able to eat on her own, she is having to relearn this... If she's unable to gain that skill back, she will need a G-tube, which is definitely not the end of the world but it would be a surgery that she would have to be under anesthesia for and we would love to be able to avoid that, for her.
Thank you all for your nonstop prayers, we feel them every single day. We are getting closer and closer to being home with Avery in our arms but she still has a long, unknown road ahead. Thank you, sweet angels, for being patient with us, supporting us, loving us, encouraging us, and just listening when you might not know what to say. We are so, so grateful. ❤
I see a little smile trying to happen...
Feb. 23, 2015
It's one of those nights that this momma is having a hard time keeping it together. I am physically and emotionally drained. You never know what kind of strength you have until you have no other choice. You also never know how much you will need to rely on Him until you have no other choice. This girl has taught me about a kind of love deeper than I can sometimes comprehend. From the moment I first met you, sweet girl, you've had my heart.
It's one of those nights that this momma is having a hard time keeping it together. I am physically and emotionally drained. You never know what kind of strength you have until you have no other choice. You also never know how much you will need to rely on Him until you have no other choice. This girl has taught me about a kind of love deeper than I can sometimes comprehend. From the moment I first met you, sweet girl, you've had my heart.
"If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you...If God had told me, "This soul would one day need extra care and needs", I still would have chosen you. If He had told me, "This soul may make your heart bleed", I still would have chosen you. If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you. If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you. If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you. If He had told me, "All that you know to be normal would drastically change", I still would have chosen you. Of course, even though I would have chosen you, I know it was God who chose me for you."
Feb. 25, 2015
Today, we ask that you lift the medical team up in prayer for guidance, direction, and steady hands. Also, please lift Avery up for a smooth procedure and calm transitions. Avery has the procedure to have a stent put in to take care of the coarctation of her aorta. It should take about 3 hours from the time she goes in to when we can see her again. We have full faith and confidence in this team and that this is the right next step for Avery in her recovery. Our God is an awesome God!
Today, we ask that you lift the medical team up in prayer for guidance, direction, and steady hands. Also, please lift Avery up for a smooth procedure and calm transitions. Avery has the procedure to have a stent put in to take care of the coarctation of her aorta. It should take about 3 hours from the time she goes in to when we can see her again. We have full faith and confidence in this team and that this is the right next step for Avery in her recovery. Our God is an awesome God!
Feb. 27, 2015
Thankful for this sweet reminder. I read this numerous times a day because when I feel like I can't, He tells me He can. Although the procedure for the placement of Avery's stent went well, last night and today have been rough. When I say rough, I mean terrifying, for all 3 of us. It seems that every time her body goes through a big change, it takes a while to get adjusted to it's new flow and rhythm. (Understandably so)...Brad and I both wish we could take away every ounce of her pain and discomfort. That's one of the hardest parts of all of this, feeling so helpless. There are times when I want to just leave the room because it hurts my heart so bad to watch her having an 'episode' but just when I think I can't handle anymore, something reminds me that she needs me there more than I need to run away. I pray for all of this to be behind us before we know it, I've never prayed for something so hard. Boy have we realized how precious life is over the last 2 months. Thank you Lord for strengthening us ALL.
Thankful for this sweet reminder. I read this numerous times a day because when I feel like I can't, He tells me He can. Although the procedure for the placement of Avery's stent went well, last night and today have been rough. When I say rough, I mean terrifying, for all 3 of us. It seems that every time her body goes through a big change, it takes a while to get adjusted to it's new flow and rhythm. (Understandably so)...Brad and I both wish we could take away every ounce of her pain and discomfort. That's one of the hardest parts of all of this, feeling so helpless. There are times when I want to just leave the room because it hurts my heart so bad to watch her having an 'episode' but just when I think I can't handle anymore, something reminds me that she needs me there more than I need to run away. I pray for all of this to be behind us before we know it, I've never prayed for something so hard. Boy have we realized how precious life is over the last 2 months. Thank you Lord for strengthening us ALL.
Feb. 28, 2015
Pure joy. Holding my sweet girl for the first time not being connected to ANYTHING in 2 months. It lasted about 15 minutes but loved. every. single. minute. By the way, today was MUCH better than the last few days. Let's pray this trend continues. Thank you so so much for every prayer lifted up.
Pure joy. Holding my sweet girl for the first time not being connected to ANYTHING in 2 months. It lasted about 15 minutes but loved. every. single. minute. By the way, today was MUCH better than the last few days. Let's pray this trend continues. Thank you so so much for every prayer lifted up.
Mar. 4, 2015
Bubbles and lashes.
Bubbles and lashes.
(later that day) I'm a couple days late, but thank you for blessing us with your sweetness for the last 6 months, baby girl. We love you more than this life itself.
It's been 68 days on a roller coaster that I wouldn't let any one ride on if I had any control over things, but we can (finally) say we are heading home on Friday!! As in two days, Friday. Home. What a beautiful word. We have waited on this day to come for far too long. We are excited beyond belief but terrified about our new normal. Please understand that we are just so lucky to be coming home with our baby girl in tow. Many didn't think that would even happen. Her little body has gone through more than most will ever have to in a lifetime. She has endured some set backs, many of which we won't realize or understand until she is a little older. Our family has some major adjusting to do and will just need some time to get back in the swing of things. Parenting is always an around-the-clock job but we have some important, new duties that are going to keep us very busy. Please, please, please be patient with us and understand we are overwhelmed.
Everyone's love, encouragement, gifts, letters, support, and PRAYERS have been such a blessing during this season and we are forever grateful. Every single day and night I have prayed that The Lord blesses each and every one of you for taking time to lift our sweet girl up to Him. There is no greater gift you can give someone who needs something that only He can provide.
I will try to continue updating on Avery's progress as I can because who doesn't love sharing GOOD news?! I know we will have trying days and good days but we aren't alone... We haven't been alone during any moment of this. Please continue to pray for complete healing... I believe in miracles because I've seen them.
Mar. 5, 2014
We started our goodbyes tonight and oh man, tomorrow is gonna be hard. Saying goodbye to some remarkable people...thank you just doesn't touch it.
We started our goodbyes tonight and oh man, tomorrow is gonna be hard. Saying goodbye to some remarkable people...thank you just doesn't touch it.
Mar. 8, 2015
Home is so much more comfy than the hospital. We made it home on Friday after a not-so-bad car ride. Avery handled being strapped into her car seat a lot better than we expected. (She is super sensitive to touch and movement and gets very upset so we were really worried about getting her in her car seat). The last couple days have been a big adjustment and just trying to get into some kind of routine that we can stay sane in. Thank you all so much for your prayers during this transition. We will continue to need them as each day brings something new but being home is definitely wonderful. Love all of you angels!!
Home is so much more comfy than the hospital. We made it home on Friday after a not-so-bad car ride. Avery handled being strapped into her car seat a lot better than we expected. (She is super sensitive to touch and movement and gets very upset so we were really worried about getting her in her car seat). The last couple days have been a big adjustment and just trying to get into some kind of routine that we can stay sane in. Thank you all so much for your prayers during this transition. We will continue to need them as each day brings something new but being home is definitely wonderful. Love all of you angels!!
A little background that led us to being bereaved parents...Pt.3
Feb. 3, 2015
It's one of those days that I just miss our old normal. Please don't ever take for granted the simple things in your day to day life. I want so badly to pick up my girl and rock her and play with her and see that smile looking back at me. Brad and I were talking about it last night and he simply said, "this is our new normal, we just have to get used to it." I think that's what's hard... Knowing what USED to be and how simply perfect it was. Change is hard. It's always been hard for me. Of course our baby is still perfect but it's change.
It's one of those days that I just miss our old normal. Please don't ever take for granted the simple things in your day to day life. I want so badly to pick up my girl and rock her and play with her and see that smile looking back at me. Brad and I were talking about it last night and he simply said, "this is our new normal, we just have to get used to it." I think that's what's hard... Knowing what USED to be and how simply perfect it was. Change is hard. It's always been hard for me. Of course our baby is still perfect but it's change.
I say all of this because we would've never experienced such graciousness in our old normal. I'm telling you, there is so much good in people and it warms my heart every second. We have met people who offer prayers, their stories, hugs, time, and gifts. We have met nurses that have become so much more than just Avery's nurses... They are her angels, literally. These nurses are so good to Avery AND us. We have heard more times than I can count that people, strangers and friends, have come to know Jesus through Avery's journey. We have met other families in the hospital that offer support and prayers. We have been blessed by a wonderful place, the Ronald McDonald House, that has given us a place to stay that is a short walk to the hospital. There are so many other blessings that we have experienced and we are so, so grateful.
Your prayers are felt, so strongly. Today, we are weaning sedation so that she can wake up a little more (we have some ground to make up since surgery kind of set us back, sedation wise). They are thinking by the end of the week possible extubation (getting her off of the ventilator) but again, she's driving this boat.
We love you all so much, our sweet angels.
Feb. 4, 2015
"I'm so happy with where she is and how far she has come. I'm very happy with the improvements I've seen neurologically." says the physician that can be a bit of a skeptic. You show 'em, girl!
"I'm so happy with where she is and how far she has come. I'm very happy with the improvements I've seen neurologically." says the physician that can be a bit of a skeptic. You show 'em, girl!
Feb. 6, 2015
Today, Avery was extubated (second attempt)!! It's such an important, big step in the right direction!! No more ventilator for this little girl (but we are oh so thankful for it and everything it did for her). Next, the meds and oxygen will continue to be weaned. It's amazing what one good day can do for the soul.
Today, Avery was extubated (second attempt)!! It's such an important, big step in the right direction!! No more ventilator for this little girl (but we are oh so thankful for it and everything it did for her). Next, the meds and oxygen will continue to be weaned. It's amazing what one good day can do for the soul.
Feb. 8, 2015
"The joy of The Lord is your strength." Nehemiah 8:10
"The joy of The Lord is your strength." Nehemiah 8:10
So joyful today. It's amazing the things that we find such joy in these days. Today, it's the progress that Avery has made with her movements. A week ago, she would clinch her fists and toes when she would get agitated. Today, she is so much more relaxed and less stiff and not squeezing together a tight fist. And this isn't just our observation, physical therapy definitely saw it too! Keep showing 'em, strong girl!!
"You are my sunshine, my only sunshine, you make me happy when skies are gray, you never know dear, how much I love you. Please don't take my sunshine away."
Feb. 12, 2015
This little snuggle muffin has had a big day. We moved out of the PICU to Intermediate Care, which was so bittersweet. We fell in love with the PICU team and these transitions are just hard...New set of doctors and nurses...but it's amazing that Avery is doing so well! No more oxygen support, this girl is doing all of the breathing on her own! The hardest thing right now is watching her come down off of the meds...pray that gets easier for all of us. Tee tiny baby steps in the right direction and all of the praise, honor, and glory goes to The Lord! Please be patient with us as we are adjusting to new things every single day. These have been the longest 50 days of our lives but we are so thankful we have our sweet girl and all of your prayers.
This little snuggle muffin has had a big day. We moved out of the PICU to Intermediate Care, which was so bittersweet. We fell in love with the PICU team and these transitions are just hard...New set of doctors and nurses...but it's amazing that Avery is doing so well! No more oxygen support, this girl is doing all of the breathing on her own! The hardest thing right now is watching her come down off of the meds...pray that gets easier for all of us. Tee tiny baby steps in the right direction and all of the praise, honor, and glory goes to The Lord! Please be patient with us as we are adjusting to new things every single day. These have been the longest 50 days of our lives but we are so thankful we have our sweet girl and all of your prayers.
Feb. 15, 2015
I just remembered to flip to today's page and it couldn't have been more spot on. I feel such a peace today about things. And I'll be the first to tell you there are plenty of days when it's hard to have that peace, the unknown is hard. But today, I feel like God has Avery right in the forefront of his mind. You know how your ears burn when someone's talking about you? It's kind of like that, I just have that feeling that today, he's got her front and center. I can't wait to see her 'emerge' from this state that she's in and see what amazing things she'll be able to do but at the same time I know it's all in His perfect timing. Her little body needs time to get over everything it's been through. I know all days aren't going to be as calm as today has been, but it at least gives me hope. So today, please be thankful for being right at the forefront of His mind. He loves us so.
I just remembered to flip to today's page and it couldn't have been more spot on. I feel such a peace today about things. And I'll be the first to tell you there are plenty of days when it's hard to have that peace, the unknown is hard. But today, I feel like God has Avery right in the forefront of his mind. You know how your ears burn when someone's talking about you? It's kind of like that, I just have that feeling that today, he's got her front and center. I can't wait to see her 'emerge' from this state that she's in and see what amazing things she'll be able to do but at the same time I know it's all in His perfect timing. Her little body needs time to get over everything it's been through. I know all days aren't going to be as calm as today has been, but it at least gives me hope. So today, please be thankful for being right at the forefront of His mind. He loves us so.
Feb. 18, 2015
This was a week before our worlds were turned upside down. Happiest baby in the world. We cannot wait to see that little smirk again. Today, my calendar is spot on again... It says "The Lord who loves you and holds you in the palm of His hand wants to bless you today--in amazing, humbling, and breathtaking ways." One of her original doctors said last that he hopes she continues to amaze everyone and prove the MRI wrong. We are seriously blessed with the best team, they sincerely care about our sweet girl.
This was a week before our worlds were turned upside down. Happiest baby in the world. We cannot wait to see that little smirk again. Today, my calendar is spot on again... It says "The Lord who loves you and holds you in the palm of His hand wants to bless you today--in amazing, humbling, and breathtaking ways." One of her original doctors said last that he hopes she continues to amaze everyone and prove the MRI wrong. We are seriously blessed with the best team, they sincerely care about our sweet girl.
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