Dear HLHS Pregnant Mom,
I've been thinking about you a lot.
You are where I was in October of 2015 when the tech told me to wait after doing another scan of our baby. I was blindsided. Were you? When they called me into the office to talk I had absolutely no idea that there was anything wrong. I didn't think there would be.
Maybe you just found out. Maybe you were just at the office hearing "your child has something wrong with their heart". Maybe you have had some time to contemplate, to process, to cry. Maybe you have no idea what to expect and you still go to bed terrified that your precious babies heart will decide to quit. Maybe you are in the "month"...waiting for labor to start, or to go in to be induced, and maybe you are so excited that you are pregnant one more day. That for one more day your baby is safe.
I want you to know: this sucks. It is big and scary. It time consuming. It heart breaking. It is hard.
I want you to know: this is beautiful. It is precious. It is a miracle.
I wish I could tell you what to expect. I wish I could tell you what its like when your baby is born and you sob, because you get precious few minutes before he or she is whisked away to be examined. I wish I could tell you how it feels to be in the recovery ward, listening to other babies cry, silent tears running down your face because your baby is in another hospital.
I wish I could tell you what it's like to have to trust a surgeon to operate on your babies walnut sized heart. I wish I could describe to you how anxious you will be while your baby is in surgery.
I wish I could warn you what your baby will look like after surgery...
I can tell you that it will be incredibly hard. That you will feel your Mama heart stretch and break every day afterwards as you trust doctors and nurses with the most amazing baby. You will cry, Mama, your arms will fall asleep Mama, you will ache and be tired Mama.
Your babies life, your babies story, will be Beautiful Mama, unique and precious.
Look, these surgeries, yes, hard, but oh...oh they give you time Mama, so much more time. Nine months, plus. My son is going to be four weeks old soon...four weeks that without this we wouldn't have had...how amazing. Embrace the beauty of how broken our babies are and you will learn to love them in ways you never thought possible.
If you love the same God I love Mama, know that you will grow to love Him more. You will learn how to pray silently through tears. You will learn to feel His presence as you watch nurses and doctors hover over your child's open chest, busy in the room, while you sit quietly. You will learn how to be weaker than you ever thought and in that moment of weakness, when you think you can't even be in the room with this baby who you love, who doesn't even look like your baby, you will learn what His strength can do. And you will stay there Mama. You will stay.
Everyday you will wake up and thank God for another day. Each set back will make you feel defeated, each step forward will make your heart swell, and all the times in between you will learn how to wait. And you will wait well.
Mama you are not alone. Take all these big feelings and find ways to tell other people. Share with the Doctors and nurses and janitors how you feel. Write about it. Draw about it. Call your Mama, cry with her. Text your friends, email your Pastors, draw from their strength as well...everyone wants so badly to share this burden. Let them. Share with them. You don't have to walk this alone.
You will handle things differently than I will, Mama. We are not all meant to be the same. Figure out what works for you. Don't compare. My child's story is not meant to be your story. Maybe my son will be in recovery for months, maybe yours only for weeks (I pray this is so for you).
Wrap yourself in these words. Clothe yourself with Strength and Dignity. Bring loads of tissues, you will cry. Bring loads of chap stick, hospitals have dry air. Bring tape, people will send you cards and notes to encourage you. Bring lotion, you will wash your hands more than you ever thought possible. Bring Hope, cling to it in the darkest times.
Oh Mama who is still pregnant with your HLHS baby, I see you. I know you. I was you. I am you. I am still in the middle of this battle, still fighting, missing my son. I think about you a lot, think about things I wish I had known, think of what I would tell you.
Don't plan so much. The most I know is the next 24 hours and each 24 hours is precious to me. May the next 24 be precious to you. May you be encouraged...I hope you are. I hope you know I am making it through something I thought I would never get through.
I hope you know, you and your baby, and your family, those who love you, are loved and held.
I know you know that I think about you. I think about you a lot...and I am praying for you, whoever you may be.
With all my love and hope,
An HLHS Mom
Saturday, March 5, 2016
Wednesday, March 2, 2016
Chapter Nine: "This Freaking Sucks"
It has been approximately 27 days since I got to properly hold my son.
Twenty. Seven. Days.
Maybe it's because I'm pretty sure I have a sinus infection and I'm cranky, but emotionally, today, I feel kinda shot to hell.
Just saying.
Most days I do well. Most days are ok. I've really made peace with the fact that if not for these surgeries, if not for this surgery, my infant son would have died. This fact never makes this suck any less.
I understand that people love us and are praying. I understand that people want to encourage us/me and tell us to be strong. I understand and I am thankful. Some days though, my favorite people are the ones who are like "Dude, your baby is sick, that freaking sucks."
Yeah, it does.
I can't describe to you how this feels, the best way to say it is that I miss my son. Even though he's in the room with me. I'm not acting like he's already dead, please, don't think that. He's not. He's alive he's alive he's alive. Every day is a miracle.
I'm missing out on his newborn stage. I'm missing out on sleepless nights, the grossest poops known to all man kind, and oh man, I'm missing out on nursing him. Those are some crazy small silly things but I miss them. I miss them so much. Even though he is so near me, he still feels so far away, and I miss him.
I have been fighting not to be jealous. I know so many other new babies. I know so many "new" mommies and my heart breaks when I see their pictures and their posts. Even when I was pregnant I would have trouble holding my friends babies...I knew that this was not the story we would have with our boy. No, I don't think where we are now makes me less of a parent (or at least I remind myself that it doesn't) but it hurts like crazy. I want to be snuggled up at home with my Deano and my Ellie. I want to be adjusting to a life of four instead of three. Right now I feel like my family is spread out, we're thin. Stretched. Will we be stronger because of this? Oh yes. Does the stretching out hurt? Like hell.
I am strong. I will continue to be strong. My strength though does not diminish the fact that this is just so rough.
He cries now. You can watch him screw up his little face, it gets all red, and he opens his mouth...but there is still no sound. He still doesn't make sounds. It has been 27 days since I heard my son cry. When he does again, I know the tears will flow that day for me as well. I understand that the silence means he's getting better (and he is!) but I miss his noises. It is a terrifying thing to see him try to cry...his chest heaving.
The worst part? When he cries, I can't pick him up. I pat his bottom and rub his head and tell him I'm here and that I won't leave him and I sing to him and I tell him stories about his Sissy and my arm falls asleep and nothing else in the world matters in those moments. I just want to make it better for him.
I just want to take this from him.
If I could, I would. I don't care that he won't remember it. I don't care that he won't remember the pain. I don't care because right now I know he is in pain and he's just a little guy...he's just my little guy...
Look this sucks ok? I have a lot of Faith and Trust and Hope, and I know God is here every single minute of every single day and guess what? It still freaking sucks. God knows that.
And maybe, today, all these emotions are springing from sickness and a splitting headache, but I don't think it matters. While there is much hope and much joy to be found in these days of waiting with my son, there's also a lot of just...crappy days.
God said there would be.
So yeah.
This freaking sucks.
Twenty. Seven. Days.
Maybe it's because I'm pretty sure I have a sinus infection and I'm cranky, but emotionally, today, I feel kinda shot to hell.
Just saying.
Most days I do well. Most days are ok. I've really made peace with the fact that if not for these surgeries, if not for this surgery, my infant son would have died. This fact never makes this suck any less.
I understand that people love us and are praying. I understand that people want to encourage us/me and tell us to be strong. I understand and I am thankful. Some days though, my favorite people are the ones who are like "Dude, your baby is sick, that freaking sucks."
Yeah, it does.
I can't describe to you how this feels, the best way to say it is that I miss my son. Even though he's in the room with me. I'm not acting like he's already dead, please, don't think that. He's not. He's alive he's alive he's alive. Every day is a miracle.
I'm missing out on his newborn stage. I'm missing out on sleepless nights, the grossest poops known to all man kind, and oh man, I'm missing out on nursing him. Those are some crazy small silly things but I miss them. I miss them so much. Even though he is so near me, he still feels so far away, and I miss him.
I have been fighting not to be jealous. I know so many other new babies. I know so many "new" mommies and my heart breaks when I see their pictures and their posts. Even when I was pregnant I would have trouble holding my friends babies...I knew that this was not the story we would have with our boy. No, I don't think where we are now makes me less of a parent (or at least I remind myself that it doesn't) but it hurts like crazy. I want to be snuggled up at home with my Deano and my Ellie. I want to be adjusting to a life of four instead of three. Right now I feel like my family is spread out, we're thin. Stretched. Will we be stronger because of this? Oh yes. Does the stretching out hurt? Like hell.
I am strong. I will continue to be strong. My strength though does not diminish the fact that this is just so rough.
He cries now. You can watch him screw up his little face, it gets all red, and he opens his mouth...but there is still no sound. He still doesn't make sounds. It has been 27 days since I heard my son cry. When he does again, I know the tears will flow that day for me as well. I understand that the silence means he's getting better (and he is!) but I miss his noises. It is a terrifying thing to see him try to cry...his chest heaving.
The worst part? When he cries, I can't pick him up. I pat his bottom and rub his head and tell him I'm here and that I won't leave him and I sing to him and I tell him stories about his Sissy and my arm falls asleep and nothing else in the world matters in those moments. I just want to make it better for him.
I just want to take this from him.
If I could, I would. I don't care that he won't remember it. I don't care that he won't remember the pain. I don't care because right now I know he is in pain and he's just a little guy...he's just my little guy...
Look this sucks ok? I have a lot of Faith and Trust and Hope, and I know God is here every single minute of every single day and guess what? It still freaking sucks. God knows that.
And maybe, today, all these emotions are springing from sickness and a splitting headache, but I don't think it matters. While there is much hope and much joy to be found in these days of waiting with my son, there's also a lot of just...crappy days.
God said there would be.
So yeah.
This freaking sucks.
Sunday, February 28, 2016
Chapter Eight: "Let There Be"
Imagine there is nothing. Just, nothing. No sun no light no dark nothing. No time.
But there's God.
He's there and He decides He wants to make stuff. Loads of stuff. Atoms and Giraffes and Bears (even Teddy Bears) and Hair and Sun and Air and Nitrogen and Balloons. He simply speaks and everything that we know to be, is. Because He says so.
When He did this, He saw everything.
He saw so far forward into the future that He saw a little tiny baby boy whose heart maybe needs a little bit of help. He saw how much that little baby would struggle, He knew that baby wouldn't survive without some help. So He started a Chain of Events.
First He made medicine and x-rays and hospitals where people with compassion decided they wanted to take care of other people. Then He made microscopes and gave people the talent and drive to figure out how to cut into people to help fix them. He knew that sin would be so crazy in this world that it would eventually affect our bodies and He wanted to help. So He sent people. Doctors and Surgeons and Nurses and Technicians and Janitors and Policemen.
Born to this world was a little girl, who grew up to be a woman, who went to school to be a doctor, who started to look at hearts, who started to look at little kids hearts, who meets moms and explains "This is what we found, this is what we can do."
Born to this world was a little boy, who grew up with younger siblings, who struggled to know who he was, who was lost for a little while, who met a girl who fell in love with him and he decided he wanted to be a man and they got married, and had a baby girl and then found out they were pregnant with a baby boy and that baby boy would have one ventricle in his heart.
God set it up. Boom boom boom, like a bowling ball, He set up the pins and set in motion what is happening right now.
He did this on the very first day that He created the world. He said "Let There Be" and there was.
There was light and dark and fish and birds and animals and grass and trees and science and math and time and day and night and there was Dean Blair Jaques V. Right from the very start of this world God was writing my little baby boys story.
But there's God.
He's there and He decides He wants to make stuff. Loads of stuff. Atoms and Giraffes and Bears (even Teddy Bears) and Hair and Sun and Air and Nitrogen and Balloons. He simply speaks and everything that we know to be, is. Because He says so.
When He did this, He saw everything.
He saw so far forward into the future that He saw a little tiny baby boy whose heart maybe needs a little bit of help. He saw how much that little baby would struggle, He knew that baby wouldn't survive without some help. So He started a Chain of Events.
First He made medicine and x-rays and hospitals where people with compassion decided they wanted to take care of other people. Then He made microscopes and gave people the talent and drive to figure out how to cut into people to help fix them. He knew that sin would be so crazy in this world that it would eventually affect our bodies and He wanted to help. So He sent people. Doctors and Surgeons and Nurses and Technicians and Janitors and Policemen.
Born to this world was a little girl, who grew up to be a woman, who went to school to be a doctor, who started to look at hearts, who started to look at little kids hearts, who meets moms and explains "This is what we found, this is what we can do."
Born to this world was a little boy, who grew up with younger siblings, who struggled to know who he was, who was lost for a little while, who met a girl who fell in love with him and he decided he wanted to be a man and they got married, and had a baby girl and then found out they were pregnant with a baby boy and that baby boy would have one ventricle in his heart.
God set it up. Boom boom boom, like a bowling ball, He set up the pins and set in motion what is happening right now.
He did this on the very first day that He created the world. He said "Let There Be" and there was.
There was light and dark and fish and birds and animals and grass and trees and science and math and time and day and night and there was Dean Blair Jaques V. Right from the very start of this world God was writing my little baby boys story.
How freaking cool is that?
Pretty freaking cool.
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Friday, February 26, 2016
Chapter Seven: "Dear Ellie..."
Dear Ellie,
This is as much your story as it is your little brothers. You don't know this, but you are giving up so so so much so that Daddy and I can be with him. You won't remember so I want to tell you, because it is important.
You are such a little girl. So tiny still. I feel like your little brother will take very much after the Carrigan side of things, as you took after the Jaques side of things. He might outweigh you pretty quickly. You will always be the big sister though. You will always have 20 months of life on him and trust me, that 20 months will go a long way at some point.
Don't forget that I had you first. Don't forget how precious those 19 months of just you and me and Daddy were. Don't ever, even for a minute, think I don't love you as much now that you have a brother.
My heart grows to hold both of you, in big big ways.
I want you to know that people love you. Uncle John and Aunt Kackie who watched you while I was in labor, giving up their Super Bowl Sunday to come take you. Mimi who flew all the way from India to meet your brother and to be here to play with you...I can't tell you how wonderful it was to know that you were with her. That she was with you. Grammy and Grumpy who might have you for a month or two while we wait and see how baby brother does. All of these people love you, so much.
None of them are Me though.
I feel guilty Ellie. I feel like less of a Mommy because I can't do everything for both of my babies. I miss you during the week in the worst ways. I'm terrified I'm going to annoy Grammy because I ask after you all the time. I'm terrified that she will resent having to look after you for weeks while I'm here at a hospital. (She assures me this is not the case...but she's your Grammy, not your Mommy, and I don't want you to ever forget that). (So for now, it's fine that she gives you ginger snaps with whipped cream).
I have to fight every day to remember that this is what God has given us. I have to fight every day to remember that in Christ I am enough, and I want to fight, because I want you to know that. You are loved. You are enough. You are strong. You are beautiful. You are kind. You are a Daughter of Christ and His love for you is BEYOND what I will ever be able to tell you.
But if I don't believe those things for myself, I know you will never believe them for yourself.
So I fight.
We're fighters Ellie. We come from some strong women, women who have been through the ringer and come out stronger on the other side.
You and me, girlfriend, we're going to come out stronger from this.
I'm going to ask so much of you one day, especially when it comes to your little brother. I'm going to ask you be kinder and gentler to him. I'm going to ask you to protect him and watch out for him on the bus and while you guys are at school. I'm going to ask you to take care of him when I can't, and I'm going to ask you to stick up for him when I'm treating him like a fragile baby doll. He's not. My head knows this, but my heart doesn't yet. Be his Big Sister. Stand up to me sometimes too.
Already you are giving up so much time with me and Daddy. Already you are making sacrifices of love, already you are showing your little brother how much you love him, simply by letting me and Daddy be here while the Doctors fix his "owies" as you like to call it. Already you are strong and teaching me to be strong. Already you show me so much compassion when you snuggle me while I cry, just because I have the privilege of holding you.
We are going to argue one day Ellie girl. We are going to fight and scream and be so so angry at each other. I might not like you and you might not like me. In fact, I promise that we won't like each other for a while. I also promise that at the end of the day, there is nothing you could do that would make me love you less. Never. My Mama said that to me once and I will say it to you, because it's truth.
You won't remember the long weeks without us, you won't remember the Facetime calls or the Skype Dates. You won't remember the tedious car rides where you tell me "ow ow ow" just because you want out of the car seat.
You won't know that I cried the other night because I just wanted to be home with my babies, you won't know that my heart hurts every time I had to leave you.
You wouldn't know any of this, unless I told you. And I want to tell you Ellie girl.
Because your brother is fighting a battle. Because you and me and Daddy...we are all fighting a battle.
And without you, you brave strong beautiful little girl, we wouldn't make such a great team.
Deano's story is your story too Ellie.
Don't forget that.
Love,
Mama
This is as much your story as it is your little brothers. You don't know this, but you are giving up so so so much so that Daddy and I can be with him. You won't remember so I want to tell you, because it is important.
You are such a little girl. So tiny still. I feel like your little brother will take very much after the Carrigan side of things, as you took after the Jaques side of things. He might outweigh you pretty quickly. You will always be the big sister though. You will always have 20 months of life on him and trust me, that 20 months will go a long way at some point.
Don't forget that I had you first. Don't forget how precious those 19 months of just you and me and Daddy were. Don't ever, even for a minute, think I don't love you as much now that you have a brother.
My heart grows to hold both of you, in big big ways.
I want you to know that people love you. Uncle John and Aunt Kackie who watched you while I was in labor, giving up their Super Bowl Sunday to come take you. Mimi who flew all the way from India to meet your brother and to be here to play with you...I can't tell you how wonderful it was to know that you were with her. That she was with you. Grammy and Grumpy who might have you for a month or two while we wait and see how baby brother does. All of these people love you, so much.
None of them are Me though.
I feel guilty Ellie. I feel like less of a Mommy because I can't do everything for both of my babies. I miss you during the week in the worst ways. I'm terrified I'm going to annoy Grammy because I ask after you all the time. I'm terrified that she will resent having to look after you for weeks while I'm here at a hospital. (She assures me this is not the case...but she's your Grammy, not your Mommy, and I don't want you to ever forget that). (So for now, it's fine that she gives you ginger snaps with whipped cream).
I have to fight every day to remember that this is what God has given us. I have to fight every day to remember that in Christ I am enough, and I want to fight, because I want you to know that. You are loved. You are enough. You are strong. You are beautiful. You are kind. You are a Daughter of Christ and His love for you is BEYOND what I will ever be able to tell you.
But if I don't believe those things for myself, I know you will never believe them for yourself.
So I fight.
We're fighters Ellie. We come from some strong women, women who have been through the ringer and come out stronger on the other side.
You and me, girlfriend, we're going to come out stronger from this.
I'm going to ask so much of you one day, especially when it comes to your little brother. I'm going to ask you be kinder and gentler to him. I'm going to ask you to protect him and watch out for him on the bus and while you guys are at school. I'm going to ask you to take care of him when I can't, and I'm going to ask you to stick up for him when I'm treating him like a fragile baby doll. He's not. My head knows this, but my heart doesn't yet. Be his Big Sister. Stand up to me sometimes too.
Already you are giving up so much time with me and Daddy. Already you are making sacrifices of love, already you are showing your little brother how much you love him, simply by letting me and Daddy be here while the Doctors fix his "owies" as you like to call it. Already you are strong and teaching me to be strong. Already you show me so much compassion when you snuggle me while I cry, just because I have the privilege of holding you.
We are going to argue one day Ellie girl. We are going to fight and scream and be so so angry at each other. I might not like you and you might not like me. In fact, I promise that we won't like each other for a while. I also promise that at the end of the day, there is nothing you could do that would make me love you less. Never. My Mama said that to me once and I will say it to you, because it's truth.
You won't remember the long weeks without us, you won't remember the Facetime calls or the Skype Dates. You won't remember the tedious car rides where you tell me "ow ow ow" just because you want out of the car seat.
You won't know that I cried the other night because I just wanted to be home with my babies, you won't know that my heart hurts every time I had to leave you.
You wouldn't know any of this, unless I told you. And I want to tell you Ellie girl.
Because your brother is fighting a battle. Because you and me and Daddy...we are all fighting a battle.
And without you, you brave strong beautiful little girl, we wouldn't make such a great team.
Deano's story is your story too Ellie.
Don't forget that.
Love,
Mama
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Sunday, February 21, 2016
Chapter Six: "Celebrate the Highs and Pray through the Lows"
Blair and I have a lot time to talk right now. We cover a wide variety of things and a lot of what I start to think about stems from that.
Today we were, of course, talking about our son.
I was asking him if I seemed to pessimistic, and he said that at times, yes, I am. I thought I was being realistic about what all is happening, but Blair just said "Sometimes, I wish you would be less...scared and more trusting." (Maybe not in those exact words, but that's what I got from his tone and as we talked more, I think this was what he was trying to say.)
As we drove home from the hospital tonight I wondered "Is this what Love really looks like?"
Let me back up here...
I didn't think a lot about this time while we were pregnant. I knew in my head that we would spend a lot of time at the hospital. I knew that it would be hard to see my son go through these surgeries. I knew that I wouldn't get to hold him like I wanted, or feed him like I wanted for a while. I accepted it.
But I didn't let it sink in, and I think this, in the end, worked against me.
Here is the truth. Cold and hard and fact: I was afraid of loving my son too much.
Afraid that if I gave my whole heart into loving him he would never wake up. Afraid, every single step of the way, that at some point we would receive that call. The one every parent dreads when they are away from their children. Oh the trust that Mama's must put in others and in God...
It was easier, for a time, to remain aloof, to think in facts, to make light of the good days, brushing them off. In my mind good news was fleeting and I was waiting waiting waiting for something that might never happen. I watched my husband and my family and his family celebrate every mile stone, as small as they might be, but my heart couldn't commit to celebrating with them. It was too afraid.
My sister in law, one of them, texted me the other day. I hope she doesn't mind me sharing this, but it's been resounding like drums in my heart ever since I read it. She said "...It makes me miss everyone more than I usually do but at the same time I feel closer to everyone as we all come together to celebrate the highs and pray through the lows."
Here is my family celebrating every weaned medicine, every open eye, every single bit of good news and here I was, his Mama, holding back. Waiting for the bad. Expecting it. Preparing for it.
Is this what real Love really is?
Committing to the highs and the lows? Embracing every single beautiful moment, moving forward, and truly loosing your heart to another human?
It's still widely thought that love doesn't hurt. Because I'm in a real place and because I can, I'm calling BS.
Yeah...yeah it would hurt to lose my son. Yeah it hurts every time I watch him struggle to cry. Yeah it hurts every time I see his blood pressure go up and can't do anything about it. Yeah it hurt to see him cut open, his heart beating there in his chest, pale, and un-moving except for that beating. Yeah it hurt to not be able to hold him. Yeah it hurt that he didn't move or open his eyes for ten days. Yes. Yes this type of love is so big and so crazy and so wonderful that it hurts.
Tonight I helped change his diaper twice. I...why is it so important and significant that I changed my sons diaper? Because he is my son and I love him and this is the first time I have changed his diaper.
Tonight I rubbed my lips and nose on his precious little head. I sang him songs that I sing to his sister and read my favorite psalms to him. Why is this so important and significant?
Because tonight, I just...I just stopped holding back. I just finally felt like this is my baby and this is his life and yes, yes scary things might happen with him. I just finally opened my heart to him and welcomed him in there no matter how much it hurts or might hurt. I don't want my son to remember all his life that his mom thought he was too fragile to love.
Let me repeat that, more for me than you.
I don't want my son to remember all his life that his mom thought he was too fragile to love.
He got his feeding tube put in today and he got the colostrum I worked and worked for. It just...felt like...Christmas morning and my Birthday and his Birthday and every other significant day ever. It felt big. So so big. And I celebrated and was excited and won't shut up about how beautiful he is and wonderful it is to see his eyes and stroke his hair and rub his legs and to sing to him and hear him calm...
Is this what Love really looks like?
Yeah. Love is celebrating the highs and praying through the lows and opening your heart to the possibility that it will be crushed like never before. It's so big and wonderful that it doesn't matter. It will never matter that my son might end up being the one who breaks my heart or that my daughter could break my heart...children have an amazing hold on their mama's. Whether they are on this side of Heaven or not.
My mind drifts back to Jesus on the cross. It drifts there a lot. His heart, God's heart, broke for us all that day. Sinners everyone. We, as children, have the ability to hurt the Lord like no other and He STILL did it for us, still gave up His life. It is important to remind myself: my children hold only pieces of my heart, my God holds all of it. And He has some strong super glue. With that glue I can love and love freely, no matter what might or might not happen, because the Lord can always glue the pieces of my heart back together and make it even more beautiful.
As we get older...we start to see love in new ways. I just never thought my children would teach me so much. I just had no inkling that my son, this barely two week old baby, would be able to teach me more about love in those barely two weeks than I've learned in three years of marriage.
Love is celebrating the highs and praying through the lows and opening your heart, no matter the circumstances. It's not just children either, husbands, wives, parents, siblings, friends all have the ability to hurt you so deeply that you think you won't be able to bounce back.
I refuse to live with my heart closed to love. Refuse to act like just because someone has the ability to hurt me (whether on purpose, or just through circumstances) that I won't love them.
It's Big and Wonderful and Scary and Awesome. It's Highs and Lows and every step in between.
And worth it.
Love is worth it.
Today we were, of course, talking about our son.
I was asking him if I seemed to pessimistic, and he said that at times, yes, I am. I thought I was being realistic about what all is happening, but Blair just said "Sometimes, I wish you would be less...scared and more trusting." (Maybe not in those exact words, but that's what I got from his tone and as we talked more, I think this was what he was trying to say.)
As we drove home from the hospital tonight I wondered "Is this what Love really looks like?"
Let me back up here...
I didn't think a lot about this time while we were pregnant. I knew in my head that we would spend a lot of time at the hospital. I knew that it would be hard to see my son go through these surgeries. I knew that I wouldn't get to hold him like I wanted, or feed him like I wanted for a while. I accepted it.
But I didn't let it sink in, and I think this, in the end, worked against me.
Here is the truth. Cold and hard and fact: I was afraid of loving my son too much.
Afraid that if I gave my whole heart into loving him he would never wake up. Afraid, every single step of the way, that at some point we would receive that call. The one every parent dreads when they are away from their children. Oh the trust that Mama's must put in others and in God...
It was easier, for a time, to remain aloof, to think in facts, to make light of the good days, brushing them off. In my mind good news was fleeting and I was waiting waiting waiting for something that might never happen. I watched my husband and my family and his family celebrate every mile stone, as small as they might be, but my heart couldn't commit to celebrating with them. It was too afraid.
My sister in law, one of them, texted me the other day. I hope she doesn't mind me sharing this, but it's been resounding like drums in my heart ever since I read it. She said "...It makes me miss everyone more than I usually do but at the same time I feel closer to everyone as we all come together to celebrate the highs and pray through the lows."
Here is my family celebrating every weaned medicine, every open eye, every single bit of good news and here I was, his Mama, holding back. Waiting for the bad. Expecting it. Preparing for it.
Is this what real Love really is?
Committing to the highs and the lows? Embracing every single beautiful moment, moving forward, and truly loosing your heart to another human?
It's still widely thought that love doesn't hurt. Because I'm in a real place and because I can, I'm calling BS.
Yeah...yeah it would hurt to lose my son. Yeah it hurts every time I watch him struggle to cry. Yeah it hurts every time I see his blood pressure go up and can't do anything about it. Yeah it hurt to see him cut open, his heart beating there in his chest, pale, and un-moving except for that beating. Yeah it hurt to not be able to hold him. Yeah it hurt that he didn't move or open his eyes for ten days. Yes. Yes this type of love is so big and so crazy and so wonderful that it hurts.
Tonight I helped change his diaper twice. I...why is it so important and significant that I changed my sons diaper? Because he is my son and I love him and this is the first time I have changed his diaper.
Tonight I rubbed my lips and nose on his precious little head. I sang him songs that I sing to his sister and read my favorite psalms to him. Why is this so important and significant?
Because tonight, I just...I just stopped holding back. I just finally felt like this is my baby and this is his life and yes, yes scary things might happen with him. I just finally opened my heart to him and welcomed him in there no matter how much it hurts or might hurt. I don't want my son to remember all his life that his mom thought he was too fragile to love.
Let me repeat that, more for me than you.
I don't want my son to remember all his life that his mom thought he was too fragile to love.
He got his feeding tube put in today and he got the colostrum I worked and worked for. It just...felt like...Christmas morning and my Birthday and his Birthday and every other significant day ever. It felt big. So so big. And I celebrated and was excited and won't shut up about how beautiful he is and wonderful it is to see his eyes and stroke his hair and rub his legs and to sing to him and hear him calm...
Is this what Love really looks like?
Yeah. Love is celebrating the highs and praying through the lows and opening your heart to the possibility that it will be crushed like never before. It's so big and wonderful that it doesn't matter. It will never matter that my son might end up being the one who breaks my heart or that my daughter could break my heart...children have an amazing hold on their mama's. Whether they are on this side of Heaven or not.
My mind drifts back to Jesus on the cross. It drifts there a lot. His heart, God's heart, broke for us all that day. Sinners everyone. We, as children, have the ability to hurt the Lord like no other and He STILL did it for us, still gave up His life. It is important to remind myself: my children hold only pieces of my heart, my God holds all of it. And He has some strong super glue. With that glue I can love and love freely, no matter what might or might not happen, because the Lord can always glue the pieces of my heart back together and make it even more beautiful.
As we get older...we start to see love in new ways. I just never thought my children would teach me so much. I just had no inkling that my son, this barely two week old baby, would be able to teach me more about love in those barely two weeks than I've learned in three years of marriage.
Love is celebrating the highs and praying through the lows and opening your heart, no matter the circumstances. It's not just children either, husbands, wives, parents, siblings, friends all have the ability to hurt you so deeply that you think you won't be able to bounce back.
I refuse to live with my heart closed to love. Refuse to act like just because someone has the ability to hurt me (whether on purpose, or just through circumstances) that I won't love them.
It's Big and Wonderful and Scary and Awesome. It's Highs and Lows and every step in between.
And worth it.
Love is worth it.
Friday, February 19, 2016
Chapter Five: "Our God is In Control"
I hate that sometimes. I wrote the title and immediately was like "That's such a yuppie Christian thing to say. Ugh Madalynn."
Just because something is said a lot though, doesn't mean that it isn't true. This is truth.
God is in Control.
I remind myself of that a lot, I have to. We have so many ups and downs, I got sick, Ellie has a cold and will not be staying with us this weekend (and I will miss her something fierce), Blair finally admitted how useless he feels...how he was ok with me being sick because it meant he could take care of me.
We gave ourselves permission not to be at the hospital all night. We put our trust in our son's Doctors and Nurses and I told myself all afternoon, "God is in Control." I've heard it said that He's up all night so I don't have to be.
I find amazing comfort in that thought.
Some days, this just...this just sucks. Hard. A lot. More than I can describe unless you've gone through it. Not something similar, it. This. Hypoplastic Left Heart Syndrome. Open heart surgery mere DAYS after being born. Do you know what newborns should do? Poop meconium, nurse at my breast, and make little sounds in the middle of the night that make me smile. They should be crying moving, wiggling, I should be changing his diapers.
My reality: I. Have. To. Wait. And pray and talk to him and rub his fuzzy little head and be away. And I can't plan a dag-on thing. I have NO idea when we get to come home. None. And even when I do find out, I won't trust it. Yesterday he was doing great, by this morning, they were doing an echo because they weren't seeing progress as he should. By this afternoon he was ok. Seriously, what the hell?
We don't go day by day. We go hour by hour.
And we wait. So much waiting.
Look though, there has been laughter. God knew that we would need laughter.
The day he had surgery his godparents came and sat with us. I love them. They crack me up and it was so good to laugh with them during that time of waiting.
Like the time my amazing mother in law and Blair's Mamaw came to bring Ellie to see us. They took us back to Front Royal to get things and boy was it an adventure. We made wrong turns. We got lost. I had to pump in the car, hysterical. I had them rolling. "Oh Hello DC, this is my boob, yup, it's happening, move alone."
Or the night I was just having a bad day. I have this weird thing right now that when I cry, I would just rather be alone. Most of the time, this happens in the shower. Blair knows. He lets me and I love that. I jump in thinking "I'll cry for a little and get it out and be done and move on." God knew that I needed laughter. Basically, with pumping, I had not been emptying myself well enough and had a knot. I worked it out in the shower and then just shot milk for a good two minutes and I laughed and laughed.
Yes. That was a story about me milking myself. You know what? I want my son to know that story some day. Because dude, it's FUNNY.
Wednesday night My amazing mother in law brought Ellie in to have dinner with us, and then she and Blair went to see Deano. When they got back I had given Ellie a bath and put her in her footie pj's. Her pj's don't have good traction. My girl LOVES LOVES LOVES the elevators, she dances in them, and tries to push the buttons. When we all got in to say good bye for the night, she ran and completely wiped out and fell on her bum and hit her head. And the three of us just laughed and laughed and laughed. (She laughed to, by the way)
Yesterday, Blair's voice randomly cracked while he was talking to one of Deano's nurses. I thought I was going to pee my pants.
Here is why these things are so important: because God is in Control. He knew, he so so so knew that we would need to fill our time with laughter. He knew we would need to allow ourselves to laugh.
I've been thinking about that all day. I was sick and came back early and slept and prayed and talked to people. If I were in control I would have completely forgotten about Joy and Laughter.
My God is so good that He doesn't forget those things.
I've been told how strong people think I am. Suddenly, I feel it. Don't get me wrong, they did their echo today and I was terrified they would "find" something. Being strong doesn't mean you're not scared though. I think it just means that you cry when you gotta (in the shower or wherever) and then you wipe those tears and say ok. Next battle. Bring it.
There are so many people I wish I could thank. So many who have no idea what their kindnesses mean to me. My cousin was here to day, haven't seen that kid in forever, and what did I do? Fought tears and asked to drive me somewhere. Without hesitation he did. (His girlfriend is so lucky to have him...shout to Carter who has actually subscribed to my blog...you are winning, just so you know)(and so is he). My parents, Blair's parents, friends from church, my older sisters, my big brothers...strangers I've never met in person...God is using YOU all to remind me that this is not something we are fighting alone.
God is using YOU all to remind me of His unfailing wonderful Control in my life, in Blair's, in Ellie's, in my Son's.
Literally every time I start to feel discouraged SOMEONE texts me. Every. Single. Time.
I am blown away by God's control. I am blown away by His love.
I am hiding there. Sheltered in His wings. Crying and Laughing when I need to.
I am thankful. More than anyone will ever know for the way this is drawing me close to God and closer to those who love me and whom I love.
Just because something is said a lot though, doesn't mean that it isn't true. This is truth.
God is in Control.
I remind myself of that a lot, I have to. We have so many ups and downs, I got sick, Ellie has a cold and will not be staying with us this weekend (and I will miss her something fierce), Blair finally admitted how useless he feels...how he was ok with me being sick because it meant he could take care of me.
We gave ourselves permission not to be at the hospital all night. We put our trust in our son's Doctors and Nurses and I told myself all afternoon, "God is in Control." I've heard it said that He's up all night so I don't have to be.
I find amazing comfort in that thought.
Some days, this just...this just sucks. Hard. A lot. More than I can describe unless you've gone through it. Not something similar, it. This. Hypoplastic Left Heart Syndrome. Open heart surgery mere DAYS after being born. Do you know what newborns should do? Poop meconium, nurse at my breast, and make little sounds in the middle of the night that make me smile. They should be crying moving, wiggling, I should be changing his diapers.
My reality: I. Have. To. Wait. And pray and talk to him and rub his fuzzy little head and be away. And I can't plan a dag-on thing. I have NO idea when we get to come home. None. And even when I do find out, I won't trust it. Yesterday he was doing great, by this morning, they were doing an echo because they weren't seeing progress as he should. By this afternoon he was ok. Seriously, what the hell?
We don't go day by day. We go hour by hour.
And we wait. So much waiting.
Look though, there has been laughter. God knew that we would need laughter.
The day he had surgery his godparents came and sat with us. I love them. They crack me up and it was so good to laugh with them during that time of waiting.
Like the time my amazing mother in law and Blair's Mamaw came to bring Ellie to see us. They took us back to Front Royal to get things and boy was it an adventure. We made wrong turns. We got lost. I had to pump in the car, hysterical. I had them rolling. "Oh Hello DC, this is my boob, yup, it's happening, move alone."
Or the night I was just having a bad day. I have this weird thing right now that when I cry, I would just rather be alone. Most of the time, this happens in the shower. Blair knows. He lets me and I love that. I jump in thinking "I'll cry for a little and get it out and be done and move on." God knew that I needed laughter. Basically, with pumping, I had not been emptying myself well enough and had a knot. I worked it out in the shower and then just shot milk for a good two minutes and I laughed and laughed.
Yes. That was a story about me milking myself. You know what? I want my son to know that story some day. Because dude, it's FUNNY.
Wednesday night My amazing mother in law brought Ellie in to have dinner with us, and then she and Blair went to see Deano. When they got back I had given Ellie a bath and put her in her footie pj's. Her pj's don't have good traction. My girl LOVES LOVES LOVES the elevators, she dances in them, and tries to push the buttons. When we all got in to say good bye for the night, she ran and completely wiped out and fell on her bum and hit her head. And the three of us just laughed and laughed and laughed. (She laughed to, by the way)
Yesterday, Blair's voice randomly cracked while he was talking to one of Deano's nurses. I thought I was going to pee my pants.
Here is why these things are so important: because God is in Control. He knew, he so so so knew that we would need to fill our time with laughter. He knew we would need to allow ourselves to laugh.
I've been thinking about that all day. I was sick and came back early and slept and prayed and talked to people. If I were in control I would have completely forgotten about Joy and Laughter.
My God is so good that He doesn't forget those things.
I've been told how strong people think I am. Suddenly, I feel it. Don't get me wrong, they did their echo today and I was terrified they would "find" something. Being strong doesn't mean you're not scared though. I think it just means that you cry when you gotta (in the shower or wherever) and then you wipe those tears and say ok. Next battle. Bring it.
There are so many people I wish I could thank. So many who have no idea what their kindnesses mean to me. My cousin was here to day, haven't seen that kid in forever, and what did I do? Fought tears and asked to drive me somewhere. Without hesitation he did. (His girlfriend is so lucky to have him...shout to Carter who has actually subscribed to my blog...you are winning, just so you know)(and so is he). My parents, Blair's parents, friends from church, my older sisters, my big brothers...strangers I've never met in person...God is using YOU all to remind me that this is not something we are fighting alone.
God is using YOU all to remind me of His unfailing wonderful Control in my life, in Blair's, in Ellie's, in my Son's.
Literally every time I start to feel discouraged SOMEONE texts me. Every. Single. Time.
I am blown away by God's control. I am blown away by His love.
I am hiding there. Sheltered in His wings. Crying and Laughing when I need to.
I am thankful. More than anyone will ever know for the way this is drawing me close to God and closer to those who love me and whom I love.
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Monday, February 15, 2016
Chapter Four: "Think of Quiet as Healing"
When it comes to my kids, I think, like most moms, I'm a doer. I want to DO things. Things that seem unimportant to you mean the world to me.
I see other moms right now with their babies, big ones, small ones, fresh from the womb ones...I see them holding and snuggling their babies. I fight against being jealous, though I am. I give that up and remember how my life is so richly blessed. I take that to Jesus. Daily.
Right now my days consist of being in a hospital room with my husband and my now week old son. We bring our kindles (We read), our computers, I have a bag of craft things. We listen to music, I post things to Facebook, I text my friends. I Skype with my beautiful girl. Today, I paid a bill, planned our month in finances, organized a list of people who are willing to help watch our girl, called my mother in law, called my Mother, planned, wrote lists, and crafted a cute name tag for Deano's bed.
I had uninterrupted time in the quiet of the day.
There was no Ellie talking about bears, no her getting into something she shouldn't or climbing on a table. She wasn't pitching a fit, she wasn't whining or singing. She wasn't here to dance to the music Blair played for a short time.
There was no Deano waking up, demanding to be nursed, crying because he was wet, needing a diaper change. There was no Ellie trying to kiss Deano for the tenth time, no her trying to pick him up. He doesn't coo, he doesn't cry, he doesn't stir. He is still.
This room is still. This room is quiet save for the many machines that monitor and beep and keep my sons heart and lungs and kidneys working. There is a low hum in his room. Often this place is just so quiet.
I chafe at it. It gets under my skin. I talk to Blair about everything and nothing to fill the silence. I talk, but not too loud, afraid that if I do I might miss the slightest sound. I play music, worship songs encouraging me to draw deeper to Christ, but not too loudly, because this space feels as though there is something there, just on the brink, and if anything is too loud we will not hear it.
I want to hear my son cry. I want to hear him coo. I want to see his eyes. I want to snuggle him close. Hold him to me and whisper my love to him, my love and God's and Daddy's and Ellie's. I still do that, I talk to him all the time. I joke him about his "girlfriends" (nurses) and remind him that he will under no circumstances be a player. I told him about the day I found out I was pregnant, how I told Amanda through Facebook before I told anyone else. How scared I was.
How all I wanted, more than anything, was for him to have a heartbeat.
How I cried when I first heard his heart beat.
How scared I was when I found out it was his heart that had an issue...how I wondered, in the silence of the night, if at any time, his heart would just stop...
I tell him how wonderful it was to feel and see him move inside me. To watch him grow. To bring him here, though in my soul I wanted him to stay in me, safe.
Someone reminded me today, that there is healing in the quiet. In the stillness.
My son's chest is still open. If he were moving, there is so much that could go wrong. It is hard not to hear him cry, but oh, am I thankful that this has given him a chance to live.
There are things that God is teaching me that I didn't know I needed to learn. Like how to be still. How to appreciate the quiet. How to accept it and live in it. How NOT to fill the silence. How to enjoy it and love it. How to see the deafening beauty that is the quiet hum of a machine. To see beauty in his open chest and swollen body.
I am reminded, daily, that he could be gone by now. When I look up from my book or my craft or my lists or as I get off the phone and see his little head there...there is a feeling of love that overtakes me. Of remembrance that this surgery has given my son a chance at life here with me, with Blair, with his sister, and Grammy and Mimi, and Grandpa and Grumpy, and countless Aunts and Uncles, and cousins.
Today I was reminded that the quiet means he is healing.
I couldn't help but think of the times God has seemed quiet in my life.
Put those thoughts together.
Maybe those times we think God is quiet, He isn't.
Maybe He's just leaving room for us to heal.
Embrace a quiet night.
Let it Heal you.
I see other moms right now with their babies, big ones, small ones, fresh from the womb ones...I see them holding and snuggling their babies. I fight against being jealous, though I am. I give that up and remember how my life is so richly blessed. I take that to Jesus. Daily.
Right now my days consist of being in a hospital room with my husband and my now week old son. We bring our kindles (We read), our computers, I have a bag of craft things. We listen to music, I post things to Facebook, I text my friends. I Skype with my beautiful girl. Today, I paid a bill, planned our month in finances, organized a list of people who are willing to help watch our girl, called my mother in law, called my Mother, planned, wrote lists, and crafted a cute name tag for Deano's bed.
I had uninterrupted time in the quiet of the day.
There was no Ellie talking about bears, no her getting into something she shouldn't or climbing on a table. She wasn't pitching a fit, she wasn't whining or singing. She wasn't here to dance to the music Blair played for a short time.
There was no Deano waking up, demanding to be nursed, crying because he was wet, needing a diaper change. There was no Ellie trying to kiss Deano for the tenth time, no her trying to pick him up. He doesn't coo, he doesn't cry, he doesn't stir. He is still.
This room is still. This room is quiet save for the many machines that monitor and beep and keep my sons heart and lungs and kidneys working. There is a low hum in his room. Often this place is just so quiet.
I chafe at it. It gets under my skin. I talk to Blair about everything and nothing to fill the silence. I talk, but not too loud, afraid that if I do I might miss the slightest sound. I play music, worship songs encouraging me to draw deeper to Christ, but not too loudly, because this space feels as though there is something there, just on the brink, and if anything is too loud we will not hear it.
I want to hear my son cry. I want to hear him coo. I want to see his eyes. I want to snuggle him close. Hold him to me and whisper my love to him, my love and God's and Daddy's and Ellie's. I still do that, I talk to him all the time. I joke him about his "girlfriends" (nurses) and remind him that he will under no circumstances be a player. I told him about the day I found out I was pregnant, how I told Amanda through Facebook before I told anyone else. How scared I was.
How all I wanted, more than anything, was for him to have a heartbeat.
How I cried when I first heard his heart beat.
How scared I was when I found out it was his heart that had an issue...how I wondered, in the silence of the night, if at any time, his heart would just stop...
I tell him how wonderful it was to feel and see him move inside me. To watch him grow. To bring him here, though in my soul I wanted him to stay in me, safe.
Someone reminded me today, that there is healing in the quiet. In the stillness.
My son's chest is still open. If he were moving, there is so much that could go wrong. It is hard not to hear him cry, but oh, am I thankful that this has given him a chance to live.
There are things that God is teaching me that I didn't know I needed to learn. Like how to be still. How to appreciate the quiet. How to accept it and live in it. How NOT to fill the silence. How to enjoy it and love it. How to see the deafening beauty that is the quiet hum of a machine. To see beauty in his open chest and swollen body.
I am reminded, daily, that he could be gone by now. When I look up from my book or my craft or my lists or as I get off the phone and see his little head there...there is a feeling of love that overtakes me. Of remembrance that this surgery has given my son a chance at life here with me, with Blair, with his sister, and Grammy and Mimi, and Grandpa and Grumpy, and countless Aunts and Uncles, and cousins.
Today I was reminded that the quiet means he is healing.
I couldn't help but think of the times God has seemed quiet in my life.
Put those thoughts together.
Maybe those times we think God is quiet, He isn't.
Maybe He's just leaving room for us to heal.
Embrace a quiet night.
Let it Heal you.
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