Being a mom, no matter what "type" of Mom you are, means you are always On. There is no off switch. There is no Me Time, there is no down time.
When we came home this last time I was so ready to be home. I was ready and excited and had it in my head that we could now do all the things. We could go everywhere and I could finally hang out with people and life would be just grand.
And I was slapped in the face with the Reality of it.
Dean is not the greatest at going out. He likes being home (who can blame him) and he likes things a certain way. The only way I can get him to nurse is if it's quiet and no one makes any loud noises and the moon is aligned with the Earth (maybe that last part is an exaggeration). We have a strict med schedule and an injection twice a day. We have two more appointments this month. And there are still red flag things that could possibly land us back in the hospital.
I guess in my head we would come home and everything would be great and I could hang out with friends and go to all these wonderful things people had invited me to and it would be fantastic, right? I would strap him onto me and we would go for walks with Ellie in the park and go throw rocks in the creek and get out of the house. I found out that taking him out in the heat is not so great for him and that if its windy the wind makes him stop breathing (talk about a moment of panic..). So we mostly stay indoors where it's cool and quiet and not windy. And Ellie hates it.
We did pretty good most of the week and then I don't know...I don't know. I just wanted to...I don't know...quit today. I wake up every morning by 5:50 every morning and most of the time Dean does not go back to sleep after his injection. And it sucks. I'm not a morning person. I wish I could explain to Dean that I would be a much better mommy if he let me sleep just like an hour more. I pray for patience pretty much every morning. And by the time he does take another good nap, Ellie is already awake and making noise and being an awesomely behaved two year old. And by awesomely I mean she's two. All hell breaks lose if I give her the wrong sippy cup/drink.
The stress of having him home finally caught up to me for real though yesterday. I saw some discoloration in his gtube and freaked. the. crap. out. I called a friend who came right away and got Ellie because I was convinced he was bleeding internally from his blood thinner. I was scared out of my mind that I would call and we would end up back in the hospital for another three weeks and my heart just sank, because mentally, I am not ready for that. I called the powers that be in DC and turns out, everything was ok, crisis averted, move on with life. Huzzah. Only to wake up this morning and go to give him a medication and realize I've been giving him double that medicine for a week. Heaps of Mom Guilt.
I am so worn. I am so tired. I am dealing with about five million different emotions and trying to navigate the fact that I have this tiny human with special medical needs. And a two year old. And I want to make sure that, like, I eat and shower. And I want to make sure we have a house that is almost maybe kinda livable since I'm home all the time now.
Expectations. I was texting my best friend and I said something to her that I didn't know I needed to say to myself. I said "we put all these expectations on ourselves to do better, to be more when Christ specifically told us that DON'T have to do those things." Where does this incredibly high and unattainable expectation that I should be able to do everything very day come from? Why is it not enough that Dean is home and healthy? Why is it not enough that I'm with Ellie now? Why do I feel the need to clean my house before any person steps into it, or apologize any time some unwritten standard is not met?
Motherhood man, it's not for the weak. Which is why God made women that way He did. I think He knew we'd have these crazy emotions about how we were always supposed to be doing better and He says "Hey, look, Chill." That part in the Bible about not worrying? I'm pretty sure He wrote that about me. He was like "Let's put this part here for Madalynn Carrigan/One day Jaques". Because He knows that some nights I have trouble sleeping because I'm afraid my kids will stop breathing.
Motherhood man, you are always on. And you have to make a lot of choices.
Today my choices entailed letting the dishes pile up and the toddler make messes so that I could semi-nap on the couch. Today the choices entailed not getting dressed until four in the afternoon and painting while my kids slept instead of folding laundry. Today my choices entailed sitting down to write before pretending to clean my kitchen. I mean hey, we have to stay up until at least 9:45 each night for meds and sometimes that's hard, because hey, Blair and I are exhausted. Is there a word for more than exhausted? I'm not sure. But if there was, it'd be used to describe us.
Motherhood man. It's Chapter Infinity. Because it just doesn't end.
Not that I would ever want it to. I love my kids. I love being a Mom. Some days, I rock it and I'm like "Yeah, we all showered, we all ate, the dishes got done, and the house didn't blow up AND I worked out (that happened one day this week for real)." And some days I'm on the opposite side of things where we watch crap tons of TV and Ellie and I eat every meal on the couch. And both days are blessings. Both days are ok. Some days though...it takes me a little longer to see the blessing.
Friday, June 17, 2016
Thursday, June 9, 2016
Just How Real IS the Struggle?
I think often about what I'm going to write here. I'll have a thought or something will happen and I will think, "That could be a good blog post." I further evaluate it and think "Is this worth writing about? Worth sharing?"
Will it help others? Will it glorify God? Will it let people into our lives?
And right now, most importantly, will my kids want to read this and be proud of their mother?
I've started and erased and rewritten fifty million times this week. I know I need to write something because there is a storm residing in my chest and maybe if I wrote it would let up. Maybe.
I do not feel like me. I don't feel...functional. I'm having a hard time going to sleep and hard time waking up. I'm having a hard time just being in the hospital room with our son. I am having a hard time justifying, everyday, needing a break. I am having a hard time, most days, breathing. I've never been one of those girls who needed to be around someone, but right now, when Blair is not with me, I feel like I am constantly fighting off a panic attack. Sometimes I feel that way even with I am with him. I had to put my hand on his chest last night to remember to breathe, in and out.
I am pessimistic. I am frustrated. I am angry. I am grieving for the life I wanted for Ellie and for Dean. I know it. And please, oh please, stop asking me how I am. Because the question makes me struggle. How much do I tell them, I wonder. How much do they really want to know?
Nurses and Doctors they ask this all the time. I don't know how to tell them that though I am glad they are caring for my son, with all of them there it makes him less and less like mine and more and more like a condition and I want to take him away from all of them. I don't know how to tell them that I am afraid to be alone with Dean right now because he HURTS and I can't do much to help him.
I feel like they gave me back a different baby after this surgery. He won't smile at me, and why should he? He's been through hell. Rubbing his head does not calm him, talking to him does not calm him, holding him does not calm him...so in a desperate attempt to help him sleep all I can do for him is push a button and ask for more drugs for him.
I feel like an awful mother. Everyone keeps telling me that it's ok to have bad days, but my bad days have strung into a whole week of "I'll try again tomorrow" and so I try again tomorrow and when I fail I feel like it's not even worth trying any more. If I am not with Dean I want to be sleeping. But if I sleep too much I feel guilty for not being with our daughter, who I miss terribly. She's going to be two this month. Will I be there for her? I don't know.
I heard lots of stories about how easy life gets after the Glenn and people keep telling me that. Maybe it got easier for them, but for me, it feels like it got increasingly harder. I heard stories about being home five days after. We've been here a week and there has been no talk of discharge, oh, wait. There has. But only because we are coming home with a medication that I have to inject him with. Two times a day until further notice I must give my son a shot. Grand. I'm so excited to be inflicting more pain on my kid, but hey, it's ok, because he gets used to it!
He gets used to it...
I don't want him to get used to it. I am angry that we had this tease of life at home and now here we are, back in DC. I am angry that I can't give people more information. It's more of the same. Hurry up and wait. If there were updates people, I'd give them. But there are none.
Blair suggested I go home for a while. Ha. Let's pile more guilt on top of the guilt I already feel. We'll have guilt cake, it'll be great.
In one 24 hour period I had three friends tell me they missed me, and then my husband told me the same thing as well. Don't worry guys, I miss me too. When I find me, I'll let you know, because this crap attitude I have is getting old.
I want to go home. I want to be home with my Ellie, I don't want my parents to have her any more. She's so tan right now. She's so precious. And I'm missing it. She has no idea what she's giving up...no idea how much I miss her...no idea how guilty I will feel about having to leave her with her grandparents for so long, no idea how jealous I am of my mother for spending every day with her. How angry I am that I am not there to pick her up in the morning, to hear her "Good morning, where Deedo?" My children are not only missing out on having their mother, they are missing out on one another. I am not looking forward to the awful adjustment period that we have together every time we come back from the hospital. I hate that I just wrote that sentence.
And I know I know, you shouldn't feel guilty, this is what you have to do, we're here for you if you want to talk, take it easy, you're doing a good job, we're praying for you, God is there when you aren't, people love you...does that about cover it? Right? Am I missing anything that someone might want to say to us/me? I feel like I've stopped trying to talk to people because I don't want to hear any of this any more. We've been here four months. We were home a total of two weeks and five days, and not consecutively. And I understand these are all ok emotions to have as long as I do not sin in them. Listen, I know the stuff ok. I know it. And I'm not asking people to even go the opposite where they tell that this sucks (I already know that), or that next year will be so different (I know that too) or to take things one day at a time (I do that).
I don't know what I need from people right now. I don't know what I need. I don't know how to be a good mother right now (And before you tell me that I am, somewhere in the back of mind I know that too, I just don't feel that way right now). I don't know if I am very strong right now (once again, please don't try to affirm how strong I am, I'm blatantly telling you, right now, that I'm not, telling me I am only makes me roll my eyes and want to sucker punch you. #truth).
I am trying to find the balance between "I'm being whiny about this" and "this truly has hurt my soul and been harder than I ever imagined". Did you know it's 10 and I haven't been to see our son yet? It is 10 and I haven't been to see our son yet. My feet feel like boulders. I feel chained to this circumstance. I am angry for Blair and for Ellie and especially for my son.
Did you know, I've had friends have babies while we've been here? I had to pray through a lot of things. The unfairness of it all always came unbidden when these precious babies were born. Oh, you were home a week after birth, that must be nice. Oh, your child isn't struggling with pain because they had their chest and sternum cut ok, how wonderful for you. It was a cycle of hurting for my son and being happy/angry with them and then feeling guilty again for being angry that other people aren't struggling.
I don't even know why I'm even telling anyone about all that. I don't even know what I'm writing right now. Maybe this is some desperate attempt to function better today. Maybe this is some last ditched effort to pull myself up by my boot straps and get to the hospital and be with my son. Do you want to know how real the struggle is?
Really real.
It's really really real.
And that's where I am.
I'm just in the middle of a really big struggle.
Will it help others? Will it glorify God? Will it let people into our lives?
And right now, most importantly, will my kids want to read this and be proud of their mother?
I've started and erased and rewritten fifty million times this week. I know I need to write something because there is a storm residing in my chest and maybe if I wrote it would let up. Maybe.
I do not feel like me. I don't feel...functional. I'm having a hard time going to sleep and hard time waking up. I'm having a hard time just being in the hospital room with our son. I am having a hard time justifying, everyday, needing a break. I am having a hard time, most days, breathing. I've never been one of those girls who needed to be around someone, but right now, when Blair is not with me, I feel like I am constantly fighting off a panic attack. Sometimes I feel that way even with I am with him. I had to put my hand on his chest last night to remember to breathe, in and out.
I am pessimistic. I am frustrated. I am angry. I am grieving for the life I wanted for Ellie and for Dean. I know it. And please, oh please, stop asking me how I am. Because the question makes me struggle. How much do I tell them, I wonder. How much do they really want to know?
Nurses and Doctors they ask this all the time. I don't know how to tell them that though I am glad they are caring for my son, with all of them there it makes him less and less like mine and more and more like a condition and I want to take him away from all of them. I don't know how to tell them that I am afraid to be alone with Dean right now because he HURTS and I can't do much to help him.
I feel like they gave me back a different baby after this surgery. He won't smile at me, and why should he? He's been through hell. Rubbing his head does not calm him, talking to him does not calm him, holding him does not calm him...so in a desperate attempt to help him sleep all I can do for him is push a button and ask for more drugs for him.
I feel like an awful mother. Everyone keeps telling me that it's ok to have bad days, but my bad days have strung into a whole week of "I'll try again tomorrow" and so I try again tomorrow and when I fail I feel like it's not even worth trying any more. If I am not with Dean I want to be sleeping. But if I sleep too much I feel guilty for not being with our daughter, who I miss terribly. She's going to be two this month. Will I be there for her? I don't know.
I heard lots of stories about how easy life gets after the Glenn and people keep telling me that. Maybe it got easier for them, but for me, it feels like it got increasingly harder. I heard stories about being home five days after. We've been here a week and there has been no talk of discharge, oh, wait. There has. But only because we are coming home with a medication that I have to inject him with. Two times a day until further notice I must give my son a shot. Grand. I'm so excited to be inflicting more pain on my kid, but hey, it's ok, because he gets used to it!
He gets used to it...
I don't want him to get used to it. I am angry that we had this tease of life at home and now here we are, back in DC. I am angry that I can't give people more information. It's more of the same. Hurry up and wait. If there were updates people, I'd give them. But there are none.
Blair suggested I go home for a while. Ha. Let's pile more guilt on top of the guilt I already feel. We'll have guilt cake, it'll be great.
In one 24 hour period I had three friends tell me they missed me, and then my husband told me the same thing as well. Don't worry guys, I miss me too. When I find me, I'll let you know, because this crap attitude I have is getting old.
I want to go home. I want to be home with my Ellie, I don't want my parents to have her any more. She's so tan right now. She's so precious. And I'm missing it. She has no idea what she's giving up...no idea how much I miss her...no idea how guilty I will feel about having to leave her with her grandparents for so long, no idea how jealous I am of my mother for spending every day with her. How angry I am that I am not there to pick her up in the morning, to hear her "Good morning, where Deedo?" My children are not only missing out on having their mother, they are missing out on one another. I am not looking forward to the awful adjustment period that we have together every time we come back from the hospital. I hate that I just wrote that sentence.
And I know I know, you shouldn't feel guilty, this is what you have to do, we're here for you if you want to talk, take it easy, you're doing a good job, we're praying for you, God is there when you aren't, people love you...does that about cover it? Right? Am I missing anything that someone might want to say to us/me? I feel like I've stopped trying to talk to people because I don't want to hear any of this any more. We've been here four months. We were home a total of two weeks and five days, and not consecutively. And I understand these are all ok emotions to have as long as I do not sin in them. Listen, I know the stuff ok. I know it. And I'm not asking people to even go the opposite where they tell that this sucks (I already know that), or that next year will be so different (I know that too) or to take things one day at a time (I do that).
I don't know what I need from people right now. I don't know what I need. I don't know how to be a good mother right now (And before you tell me that I am, somewhere in the back of mind I know that too, I just don't feel that way right now). I don't know if I am very strong right now (once again, please don't try to affirm how strong I am, I'm blatantly telling you, right now, that I'm not, telling me I am only makes me roll my eyes and want to sucker punch you. #truth).
I am trying to find the balance between "I'm being whiny about this" and "this truly has hurt my soul and been harder than I ever imagined". Did you know it's 10 and I haven't been to see our son yet? It is 10 and I haven't been to see our son yet. My feet feel like boulders. I feel chained to this circumstance. I am angry for Blair and for Ellie and especially for my son.
Did you know, I've had friends have babies while we've been here? I had to pray through a lot of things. The unfairness of it all always came unbidden when these precious babies were born. Oh, you were home a week after birth, that must be nice. Oh, your child isn't struggling with pain because they had their chest and sternum cut ok, how wonderful for you. It was a cycle of hurting for my son and being happy/angry with them and then feeling guilty again for being angry that other people aren't struggling.
I don't even know why I'm even telling anyone about all that. I don't even know what I'm writing right now. Maybe this is some desperate attempt to function better today. Maybe this is some last ditched effort to pull myself up by my boot straps and get to the hospital and be with my son. Do you want to know how real the struggle is?
Really real.
It's really really real.
And that's where I am.
I'm just in the middle of a really big struggle.
Thursday, June 2, 2016
Part Two: Chapter Seven: "Scars Upon Our Memories"
When we were home that first time I took Ellie and Dean to the Library. I couldn't help it, I wanted to show off. I love the people there and I miss it terribly and I was so excited to be home that I just wanted to show them all how beautiful and wonderful and strong our son was. When we went I overheard a woman talking to an older man, they were regulars, people we saw at the Library often. They were talking about writing and I overheard this small snip-it "you should write your story, that's why the Bible says so often to write things down."
I've remembered it and think about that often. About how I'm writing this story, about why I am writing this story. About people telling me that I'm a wonderful writer or that they are blessed by my words.
It amazes me that people read these things and are blessed by them. Especially because I'm awful at grammar and spelling and sometimes I jumble my words. I think of Moses. He was awful at talking and God still used his voice. Let me be like Moses, Father.
I wonder when Dean's story will come to a close. I wonder what the final chapter will be and how I will write that. I worry, as I will for the rest of his life, that the final chapter will be when he goes on to Heaven and leaves me here, waiting for him. I will always worry about that. I will constantly bring that before the Lord. I have to. Or the weight of it will crush me.
Each chapter of his story tells such a different tale, starts so differently. He had his second open heart surgery today. It almost feels that I was hardened to what was happening. What no one tells you when you have a child diagnosed with Hypoplastic Left Heart Syndromes is that it's not always the surgeries that will be hard, it's the recovery.
Surgery I can handle. You eat a lot, wait a lot, read a lot, maybe craft a little bit. You don't see your child cut open. You don't see them on the operating table. You don't see that part.
The part you see is the part that stings. Your child on a big hospital bed, pale and swollen. Chest tubes and dried blood stains. Their mouth hanging open, nose cannula taped to their face. You see the machines with the medicines, the nurses sitting IN their room, the lights dimmed. You see the IV's hooked in their arms, the Arterial line sewn in. You hear your child cry hoarsely and you can tell that they are in pain, it is written on their face...
That. That is the harder part.
We have weathered another storm. Gotten to the boat and then been asked to step out onto the waves. I wonder, when Peter did that, if his legs got tired from walking on the water? We know that Peter sank because lack of Faith, but I wonder if his legs were burning to. If his muscles were pushed beyond what he thought he could do and in that moment of weariness, if that is when he lost Faith.
Faith does not show itself when you are strong. It comes to you unbidden when you want to hid and run and throw temper tantrums. It reminds you that in the end there is One Winner and that you are following Him. It reminds you that the battle is not yours, but His, if you are willing to trust that He knows the best strategy.
If I could have given my son life any other way than this, I would have. Which is why I'm not the one giving him life, He is. And this is what He has chosen. This is the story that God has given Dean.
I write about this because one day I will forget. I will forget the machines and the endless waiting and how it felt to leave him at night to go sleep. I will forget that he looked awful after the Norwood and the Glenn and that all I wanted was to hold him. I will forget that life is precious and I need to treasure it. I think we all do. It is easy to. It is easy to forget that you are not promised tomorrow when there are bills to pay and work to go and chores to be done. It is easy to forget that there is joy in life when your child is in pain and you can't help them. It is so fragile. I write because I don't want to forget. I want to be Faithful. I want to push through this. I want to remember that we will not ALWAYS be in DC. I want to remember that next year Lord Willing we will be home and these will be but scars upon our memories. Scars are there, but they are not gaping wounds. We are in a place right now with fresh wounds. With hurts and fears. But Praise God, they are scabbing over.
They are scabbing over.
And my beautiful son will come back home. And we will struggle. And I will go crazy wanting to do everything. And Ellie will drive me batty. And Dean will cry while I make dinner.
And it will be part of this beautiful story.
I've remembered it and think about that often. About how I'm writing this story, about why I am writing this story. About people telling me that I'm a wonderful writer or that they are blessed by my words.
It amazes me that people read these things and are blessed by them. Especially because I'm awful at grammar and spelling and sometimes I jumble my words. I think of Moses. He was awful at talking and God still used his voice. Let me be like Moses, Father.
I wonder when Dean's story will come to a close. I wonder what the final chapter will be and how I will write that. I worry, as I will for the rest of his life, that the final chapter will be when he goes on to Heaven and leaves me here, waiting for him. I will always worry about that. I will constantly bring that before the Lord. I have to. Or the weight of it will crush me.
Each chapter of his story tells such a different tale, starts so differently. He had his second open heart surgery today. It almost feels that I was hardened to what was happening. What no one tells you when you have a child diagnosed with Hypoplastic Left Heart Syndromes is that it's not always the surgeries that will be hard, it's the recovery.
Surgery I can handle. You eat a lot, wait a lot, read a lot, maybe craft a little bit. You don't see your child cut open. You don't see them on the operating table. You don't see that part.
The part you see is the part that stings. Your child on a big hospital bed, pale and swollen. Chest tubes and dried blood stains. Their mouth hanging open, nose cannula taped to their face. You see the machines with the medicines, the nurses sitting IN their room, the lights dimmed. You see the IV's hooked in their arms, the Arterial line sewn in. You hear your child cry hoarsely and you can tell that they are in pain, it is written on their face...
That. That is the harder part.
We have weathered another storm. Gotten to the boat and then been asked to step out onto the waves. I wonder, when Peter did that, if his legs got tired from walking on the water? We know that Peter sank because lack of Faith, but I wonder if his legs were burning to. If his muscles were pushed beyond what he thought he could do and in that moment of weariness, if that is when he lost Faith.
Faith does not show itself when you are strong. It comes to you unbidden when you want to hid and run and throw temper tantrums. It reminds you that in the end there is One Winner and that you are following Him. It reminds you that the battle is not yours, but His, if you are willing to trust that He knows the best strategy.
If I could have given my son life any other way than this, I would have. Which is why I'm not the one giving him life, He is. And this is what He has chosen. This is the story that God has given Dean.
I write about this because one day I will forget. I will forget the machines and the endless waiting and how it felt to leave him at night to go sleep. I will forget that he looked awful after the Norwood and the Glenn and that all I wanted was to hold him. I will forget that life is precious and I need to treasure it. I think we all do. It is easy to. It is easy to forget that you are not promised tomorrow when there are bills to pay and work to go and chores to be done. It is easy to forget that there is joy in life when your child is in pain and you can't help them. It is so fragile. I write because I don't want to forget. I want to be Faithful. I want to push through this. I want to remember that we will not ALWAYS be in DC. I want to remember that next year Lord Willing we will be home and these will be but scars upon our memories. Scars are there, but they are not gaping wounds. We are in a place right now with fresh wounds. With hurts and fears. But Praise God, they are scabbing over.
They are scabbing over.
And my beautiful son will come back home. And we will struggle. And I will go crazy wanting to do everything. And Ellie will drive me batty. And Dean will cry while I make dinner.
And it will be part of this beautiful story.
Monday, May 30, 2016
Part Two: Chapter Six: "I Hate Some Chapters"
I am wondering how to accurately describe a feeling. How to tell you about hugs and family and love. If you've never known what it is like to love without hindrance or conditions my heart goes out to you.
There are so many things right now that I want to record. I want to write down. The way it felt to see my brothers, to be hugged by them, how it felt to be near my older sisters, all of them, the amazing love and grace Blair and I were shown all weekend. I want to tell you all what it was like to watch my family, my favorite people, all be in a room looking at our son, who years ago, wouldn't even be alive. Some of them cried. I didn't, not really, I was to excited. I tell you I have never had an audience while changing a diaper until this past Sunday!
Saturday my family was celebrating my amazing younger sister graduating High School, we paused to take a family picture. We were all there. Except Dean. I went inside and was talking to my mom.
"What's wrong sweetie?"
Moms know man. Moms know.
I wanted Dean home this weekend. I didn't want him at the hospital. I have never struggled with him being there like I have this last time. I have struggled to go into the hospital. Struggled to stay in his room. Gone back home more than I normally have. My heart was angry and hurting and longing for the freedom that we had at home. Frustrated that I spent two weeks without Blair, getting to know our son, and before he got to come home and do that, we were back in the hospital. I didn't want my family to have to plan how we were all getting to the Hospital in DC, I just wanted to drive over with our boy. To spend the whole day with his family, to get to know them. I just needed to lay my head against her and have a moment to cry, to grieve for the life that my son is missing while he has to heal.
I want the doctors to be definitive. I wanted answers last Monday. I wanted them to tell me a plan and stick to it. I was angry at them. Frustrated. Annoyed because it felt like they were not giving me answers. I watched Dean turn blue last week and then start breathing incredibly fast and I had to sit and watch and do nothing. I told the doctors at Rounds the next morning "This is not ok, I need answers. What are we going to do." It is agreed that we are going to look to do the next surgery soon. Tomorrow the doctors and surgeon have their big pow-wow and decide WHEN.
I want them to do it. I want it to go smoothly, because I want to be back home. For good.
I am telling a story. Dean's Story. Ellie's Story. Blair and I's story. All these chapters.
I was thinking today about Chapters in books, how some you love and you are sad when they end. How there are some that you hate and can't wait to get to the end of them.
I'm not a fan of this chapter. My reserves feel shot, weary once again. I keep trying to "fill my cup" and believe me, seeing ALL of my siblings together CERTAINLY gave me enough strength for the week...but I will be glad when this chapter of our story ends and we get to the next one.
There are so many things right now that I want to record. I want to write down. The way it felt to see my brothers, to be hugged by them, how it felt to be near my older sisters, all of them, the amazing love and grace Blair and I were shown all weekend. I want to tell you all what it was like to watch my family, my favorite people, all be in a room looking at our son, who years ago, wouldn't even be alive. Some of them cried. I didn't, not really, I was to excited. I tell you I have never had an audience while changing a diaper until this past Sunday!
Saturday my family was celebrating my amazing younger sister graduating High School, we paused to take a family picture. We were all there. Except Dean. I went inside and was talking to my mom.
"What's wrong sweetie?"
Moms know man. Moms know.
I wanted Dean home this weekend. I didn't want him at the hospital. I have never struggled with him being there like I have this last time. I have struggled to go into the hospital. Struggled to stay in his room. Gone back home more than I normally have. My heart was angry and hurting and longing for the freedom that we had at home. Frustrated that I spent two weeks without Blair, getting to know our son, and before he got to come home and do that, we were back in the hospital. I didn't want my family to have to plan how we were all getting to the Hospital in DC, I just wanted to drive over with our boy. To spend the whole day with his family, to get to know them. I just needed to lay my head against her and have a moment to cry, to grieve for the life that my son is missing while he has to heal.
I want the doctors to be definitive. I wanted answers last Monday. I wanted them to tell me a plan and stick to it. I was angry at them. Frustrated. Annoyed because it felt like they were not giving me answers. I watched Dean turn blue last week and then start breathing incredibly fast and I had to sit and watch and do nothing. I told the doctors at Rounds the next morning "This is not ok, I need answers. What are we going to do." It is agreed that we are going to look to do the next surgery soon. Tomorrow the doctors and surgeon have their big pow-wow and decide WHEN.
I want them to do it. I want it to go smoothly, because I want to be back home. For good.
I am telling a story. Dean's Story. Ellie's Story. Blair and I's story. All these chapters.
I was thinking today about Chapters in books, how some you love and you are sad when they end. How there are some that you hate and can't wait to get to the end of them.
I'm not a fan of this chapter. My reserves feel shot, weary once again. I keep trying to "fill my cup" and believe me, seeing ALL of my siblings together CERTAINLY gave me enough strength for the week...but I will be glad when this chapter of our story ends and we get to the next one.
Saturday, May 21, 2016
Pause: Facts versus Feelings
Today I sat in the parking garage for thirty minutes before coming up to my sons hospital room.
I sat and tears just poured down my face. It felt like my feet just wouldn't/couldn't move. All of my will power was just drained. The thought of getting out of the car and into the elevator and up to the lobby and walking to his room just felt like stones on my chest.
Do you know what it's like to not be able to breathe?
It was that feeling. All the sudden the world was too big and his heart was too small and I was just stuck here, in a dirty dark parking garage in my car, crying.
When we're here, he doesn't feel like my baby. He doesn't feel like he belongs to me. The bars on his bed feel like a cage, keeping him in and me out. It's not truly that way, it's just how it feels. Which is why I don't stay there, in that feeling. Because it is only a feeling. And facts, sometimes, outweigh feelings.
The fact is, this is where he needs to be. Not just that he has to be, but needs to be.
The fact is, we knew this was a possibility, a reality. We accepted that.
The fact is, we got to go home for two+ weeks total, and some babies don't get to go home ever.
The fact is, I don't have to like this, I just have to show up. Even if that means I take too many walks. Even if that means I spend an hour in the cafeteria slowly eating my food. Even if I have to sleep some where else at night.
The fact is, my son knows when I am in the room, he knows my voice, he knows my face, this is enough.
The fact is, this year is going to be hard and difficult and rough, but it is only one year. What is one year compared to Eternity?
Facts.
I have to deal in facts when the bad days come rolling in, one by one, waves that crash into my heart. I tell myself, one day at a time. One more day. Each day has added up tenfold and felt like one more day of pain. Every time his heart races, so does mine. Every time he drops his oxygen saturation levels, I find it harder to breathe myself. His heart and my heart, connected in ways that only other mama's who have heart babies will understand.
They poke and prod him. Temperature checks when he was sleep, blood pressure cuffs that piss him off. When he was sound asleep. Nose cannula on his face and stickers on his chest, measuring, monitoring everything. Watching closely.
What choice do we have? To go home and wait? To watch his color change at home where there is no extra oxygen to put him on?
Our life now. This is our life. My head has accepted this. My heart still hates it.
If I could give him my whole heart and take every needle, every surgery, every day spent inside these four walls that are becoming home, I would.
I wouldn't even think twice.
My adorable little Gimpy Heart Baby. My precious son.
I wish I could give you my heart.
I sat and tears just poured down my face. It felt like my feet just wouldn't/couldn't move. All of my will power was just drained. The thought of getting out of the car and into the elevator and up to the lobby and walking to his room just felt like stones on my chest.
Do you know what it's like to not be able to breathe?
It was that feeling. All the sudden the world was too big and his heart was too small and I was just stuck here, in a dirty dark parking garage in my car, crying.
When we're here, he doesn't feel like my baby. He doesn't feel like he belongs to me. The bars on his bed feel like a cage, keeping him in and me out. It's not truly that way, it's just how it feels. Which is why I don't stay there, in that feeling. Because it is only a feeling. And facts, sometimes, outweigh feelings.
The fact is, this is where he needs to be. Not just that he has to be, but needs to be.
The fact is, we knew this was a possibility, a reality. We accepted that.
The fact is, we got to go home for two+ weeks total, and some babies don't get to go home ever.
The fact is, I don't have to like this, I just have to show up. Even if that means I take too many walks. Even if that means I spend an hour in the cafeteria slowly eating my food. Even if I have to sleep some where else at night.
The fact is, my son knows when I am in the room, he knows my voice, he knows my face, this is enough.
The fact is, this year is going to be hard and difficult and rough, but it is only one year. What is one year compared to Eternity?
Facts.
I have to deal in facts when the bad days come rolling in, one by one, waves that crash into my heart. I tell myself, one day at a time. One more day. Each day has added up tenfold and felt like one more day of pain. Every time his heart races, so does mine. Every time he drops his oxygen saturation levels, I find it harder to breathe myself. His heart and my heart, connected in ways that only other mama's who have heart babies will understand.
They poke and prod him. Temperature checks when he was sleep, blood pressure cuffs that piss him off. When he was sound asleep. Nose cannula on his face and stickers on his chest, measuring, monitoring everything. Watching closely.
What choice do we have? To go home and wait? To watch his color change at home where there is no extra oxygen to put him on?
Our life now. This is our life. My head has accepted this. My heart still hates it.
If I could give him my whole heart and take every needle, every surgery, every day spent inside these four walls that are becoming home, I would.
I wouldn't even think twice.
My adorable little Gimpy Heart Baby. My precious son.
I wish I could give you my heart.
Sunday, May 15, 2016
Part Two: Chapter Five: "I Can't Give Myself Grace"
I am waiting for nine thirty. At nine thirty I can give Dean his Flecanide and then curl up in bed next to my little snuggle buddy.
Ellie watched too much TV today. No one, including myself, got dressed today. We hung out in our pajama's. At one point, Dean was asleep and I was falling asleep on and off on the couch while Ellie "watched" (I use that term loosely, there were many wipes lost to this 30 minute time period) Daniel Tiger and Masha and the Bear.
This weekend one of the pastors at our church came and took care of the yard for us. It is no longer a jungle. It is amazing to see people physically being the hands and feet of Jesus. I am trying to wait patiently during this time...because I want to one day help others the way that we have been helped. It feels awful not being able to give back. Seasons. I remind myself this is a season.
I am learning what it truly means to give yourself grace. What I've found is that I suck at it. I don't want to give myself grace. I don't know how to. Which is why I rely so heavily on my Heavenly Father. The grace I could "give" to myself is crap. The Grace He can give me is infinite and glorious.
His grace knows when I am at the worst point in my day. When I look around and think of the million things I wish I could do. When I look longingly at my "art corner" and wish I could work in an art journal, or a painting, or just sit there in general. Alone. My heart in these times is selfish and self-seeking...
His grace meets me when my son wants only to be held and I remind myself how for a month straight I couldn't hold him and it hurt my soul deeply. Grace happens at the crossroads of "this is what I wanted" and "this is your reality". It allows me to listen to my sons crying and remember that he was silent for so long. There are blessings in his screams.
Grace rubs my back when I am changing yet another diaper, Ellie kicking her feet in the air, running from me because she thinks its a game, the only one I have "time" to play with her. Grace knows that I feel guilty for not doing more with here and for her. As though I am trying to catch up on 70 plus days where I was without her. As though I can take back the months I missed seeing her grow. When my mom understands the way she talks more than I do.
In the middle of the night when my eyes are heavy and my heart is missing Blair and Dean is screaming yet again and I don't know how to help settle him, Grace finds me, hugs me, tells me that yes, dawn will come. We will make it through another night. It tells me that I am not a bad mother...this is whispers frequently and lovingly to my wounded mama soul.
I cannot give myself grace. I do not have the mental capacity nor the fortitude to do so. I am too tired. I am to concentrated on making sure I don't hurt my little girls heart by being to abrupt with her. By dismissing her needs...when she so clearly still needs me. Finding the balance between my two children, especially given Deans heart, has been challenging and trying and daunting and exhausting.
And it has been beautiful. To see him look up at his sister and stop to study her. To see her pat her lap and ask for her "Deedo". To hear her pray at night for the people she loves, Grammy, Grumpy, Mama, Daddy, Deedo, Uncle John, Kackie, Abbie, and usually Daddy again.
At the end of the day I do what I think every mother does: their best. And sometimes (everyday, really...) their best falls so short of what God intended. As we all do. This is where His beautiful, life saving, soul soothing Grace steps in. A reminder. I do not have to be enough because Christ is enough in me. It is a balm to my soul on these days where I feel I have failed my children.
Do not give yourselves Grace, oh my Mama-In-The-Trenches friends, my struggling to conceive, my first time mama friends and third time mama friends, ASK Him for it. Rely on His Grace. His Grace is not flawed or marred. The price that comes with it is that you surrender your lives to Him. Rest in Him. Find Love and Strength and Grace through him.
Realize that none of us, no matter where we are in this life, can do it on our own.
Ellie watched too much TV today. No one, including myself, got dressed today. We hung out in our pajama's. At one point, Dean was asleep and I was falling asleep on and off on the couch while Ellie "watched" (I use that term loosely, there were many wipes lost to this 30 minute time period) Daniel Tiger and Masha and the Bear.
This weekend one of the pastors at our church came and took care of the yard for us. It is no longer a jungle. It is amazing to see people physically being the hands and feet of Jesus. I am trying to wait patiently during this time...because I want to one day help others the way that we have been helped. It feels awful not being able to give back. Seasons. I remind myself this is a season.
I am learning what it truly means to give yourself grace. What I've found is that I suck at it. I don't want to give myself grace. I don't know how to. Which is why I rely so heavily on my Heavenly Father. The grace I could "give" to myself is crap. The Grace He can give me is infinite and glorious.
His grace knows when I am at the worst point in my day. When I look around and think of the million things I wish I could do. When I look longingly at my "art corner" and wish I could work in an art journal, or a painting, or just sit there in general. Alone. My heart in these times is selfish and self-seeking...
His grace meets me when my son wants only to be held and I remind myself how for a month straight I couldn't hold him and it hurt my soul deeply. Grace happens at the crossroads of "this is what I wanted" and "this is your reality". It allows me to listen to my sons crying and remember that he was silent for so long. There are blessings in his screams.
Grace rubs my back when I am changing yet another diaper, Ellie kicking her feet in the air, running from me because she thinks its a game, the only one I have "time" to play with her. Grace knows that I feel guilty for not doing more with here and for her. As though I am trying to catch up on 70 plus days where I was without her. As though I can take back the months I missed seeing her grow. When my mom understands the way she talks more than I do.
In the middle of the night when my eyes are heavy and my heart is missing Blair and Dean is screaming yet again and I don't know how to help settle him, Grace finds me, hugs me, tells me that yes, dawn will come. We will make it through another night. It tells me that I am not a bad mother...this is whispers frequently and lovingly to my wounded mama soul.
I cannot give myself grace. I do not have the mental capacity nor the fortitude to do so. I am too tired. I am to concentrated on making sure I don't hurt my little girls heart by being to abrupt with her. By dismissing her needs...when she so clearly still needs me. Finding the balance between my two children, especially given Deans heart, has been challenging and trying and daunting and exhausting.
And it has been beautiful. To see him look up at his sister and stop to study her. To see her pat her lap and ask for her "Deedo". To hear her pray at night for the people she loves, Grammy, Grumpy, Mama, Daddy, Deedo, Uncle John, Kackie, Abbie, and usually Daddy again.
At the end of the day I do what I think every mother does: their best. And sometimes (everyday, really...) their best falls so short of what God intended. As we all do. This is where His beautiful, life saving, soul soothing Grace steps in. A reminder. I do not have to be enough because Christ is enough in me. It is a balm to my soul on these days where I feel I have failed my children.
Do not give yourselves Grace, oh my Mama-In-The-Trenches friends, my struggling to conceive, my first time mama friends and third time mama friends, ASK Him for it. Rely on His Grace. His Grace is not flawed or marred. The price that comes with it is that you surrender your lives to Him. Rest in Him. Find Love and Strength and Grace through him.
Realize that none of us, no matter where we are in this life, can do it on our own.
Tuesday, May 10, 2016
Part Two: Chapter Four: "Dishes"
I will try to write these thoughts as quickly as I can. I don't want to stop writing about what we are going through, though now it feels more mundane than the scary stuff we were dealing with in February.
Dean is in his swing, sleeping. Ellie is in her bed, talking/whining/singing to herself. There is a pile of books next to me that we read before bedtime, so so so many dishes in the sink, three piles of clothes to be folded, a load in the dryer, several that already need to be washed, and breast milk thawing for Dean's night time feed. There are things piled next to me on the end tables and still there are things in baskets that need to be put away. I want to sweep, mop, vacuum, clean the fridge, mow and weed eat, organize the garage. I want to deep clean the bathroom, organize the cabinets. I want to make dinner that is not a sandwich one night. The past three days I have left my house, with both kids, and done different things. I have been encouraged and uplifted and praised for "how well" I am doing with my kids.
We get told a lot, "you are doing so well" "I couldn't have done this" "wow you have it down". I love that people want to encourage me, but these things make me laugh.
Dean is still a baby. Bringing him home was much the same as it would have been had we brought him home when he was born. We just have to keep him on his medicine and watch his colors. Sure, I have to feed him most of the time through a tube and I don't like to let him scream for TOO long, but he's still a baby. He still is treated like a baby.
I'm still exhausted. I'm still a mom adjusting to having both my kids. Add in there that Blair had been gone since Saturday and won't be home for a while yet, and yeah, sometimes I wish I could throw one of my kids out the window. Don't judge. If you are mom you'd be lying if you said you had it all together.
Things are hectic. Crazy. I wake up every morning at six to make sure Dean gets his medication. Tomorrow we head back to our favorite place (le hospital uggghhh) for ANOTHER appointment. I will probably regret sitting down to write this because I'll look at the dishes and sigh to myself and then want to cry.
How glorious to be in the mundane. I don't always love it, but today I do. It's wonderful to be in my own chaotic home with my nutso almost two year old and my gimpy heart baby. I love it. In the moments when they are both crying and I have to decide who to go to first, I try very hard to take a deep breathe and remember those lonely nights when I had neither of them close to me. It helps me to be more intentional.
Every day I make an effort to write in my art journal. To work in it in some small way. Blair calls me every night and we talk for a minute. He tells me what he's doing and I tell him about his beautiful babies.
The days are flying by. I'm afraid that I will close my eyes and the next thing I know we will be prepping for the next surgery. I'm afraid I will close my eyes and wake up and Ellie will be 5, 10, 15 and I will regret not picking her up because I was too worried about doing the dishes.
Life is a balance. We must balance being good stewards of what we've been given and making sure we don't pursue the good instead of the best things. FYI, taking care of my house is good, loving on my children is better.
It's easy to forget at four in the morning that I shouldn't have my son. That his life has come at a steep price. It's easy to forget how scary it was to see his chest open, tubes in his body when he won't let me put him down and I need to pump. I remind myself every day, none of us deserve the miracle of the life that we've been given.
Good days and bad days. Days where I can forget the dishes and write a blog post. Days where I can't. Not every day can be the best day and there will be struggle.
But when Ellie gives me kisses and calls for me, when she asks to pray before bed...when Dean smiles at me, his ENTIRE face lit up...these are the moments to remember. Anyway...he's awake now, and any second will realize I'm not holding him.
I'll probably go to sleep with that pile of dishes waiting.
And that's fine with me. It really is.
Addendum: and sometimes, your OCD gets the best of you and you just can't help it and you do the dishes anyways and let the gimpy heart baby scream at you from his swing. He made it this far, he'll survive. ;)
Dean is in his swing, sleeping. Ellie is in her bed, talking/whining/singing to herself. There is a pile of books next to me that we read before bedtime, so so so many dishes in the sink, three piles of clothes to be folded, a load in the dryer, several that already need to be washed, and breast milk thawing for Dean's night time feed. There are things piled next to me on the end tables and still there are things in baskets that need to be put away. I want to sweep, mop, vacuum, clean the fridge, mow and weed eat, organize the garage. I want to deep clean the bathroom, organize the cabinets. I want to make dinner that is not a sandwich one night. The past three days I have left my house, with both kids, and done different things. I have been encouraged and uplifted and praised for "how well" I am doing with my kids.
We get told a lot, "you are doing so well" "I couldn't have done this" "wow you have it down". I love that people want to encourage me, but these things make me laugh.
Dean is still a baby. Bringing him home was much the same as it would have been had we brought him home when he was born. We just have to keep him on his medicine and watch his colors. Sure, I have to feed him most of the time through a tube and I don't like to let him scream for TOO long, but he's still a baby. He still is treated like a baby.
I'm still exhausted. I'm still a mom adjusting to having both my kids. Add in there that Blair had been gone since Saturday and won't be home for a while yet, and yeah, sometimes I wish I could throw one of my kids out the window. Don't judge. If you are mom you'd be lying if you said you had it all together.
Things are hectic. Crazy. I wake up every morning at six to make sure Dean gets his medication. Tomorrow we head back to our favorite place (le hospital uggghhh) for ANOTHER appointment. I will probably regret sitting down to write this because I'll look at the dishes and sigh to myself and then want to cry.
How glorious to be in the mundane. I don't always love it, but today I do. It's wonderful to be in my own chaotic home with my nutso almost two year old and my gimpy heart baby. I love it. In the moments when they are both crying and I have to decide who to go to first, I try very hard to take a deep breathe and remember those lonely nights when I had neither of them close to me. It helps me to be more intentional.
Every day I make an effort to write in my art journal. To work in it in some small way. Blair calls me every night and we talk for a minute. He tells me what he's doing and I tell him about his beautiful babies.
The days are flying by. I'm afraid that I will close my eyes and the next thing I know we will be prepping for the next surgery. I'm afraid I will close my eyes and wake up and Ellie will be 5, 10, 15 and I will regret not picking her up because I was too worried about doing the dishes.
Life is a balance. We must balance being good stewards of what we've been given and making sure we don't pursue the good instead of the best things. FYI, taking care of my house is good, loving on my children is better.
It's easy to forget at four in the morning that I shouldn't have my son. That his life has come at a steep price. It's easy to forget how scary it was to see his chest open, tubes in his body when he won't let me put him down and I need to pump. I remind myself every day, none of us deserve the miracle of the life that we've been given.
Good days and bad days. Days where I can forget the dishes and write a blog post. Days where I can't. Not every day can be the best day and there will be struggle.
But when Ellie gives me kisses and calls for me, when she asks to pray before bed...when Dean smiles at me, his ENTIRE face lit up...these are the moments to remember. Anyway...he's awake now, and any second will realize I'm not holding him.
I'll probably go to sleep with that pile of dishes waiting.
And that's fine with me. It really is.
Addendum: and sometimes, your OCD gets the best of you and you just can't help it and you do the dishes anyways and let the gimpy heart baby scream at you from his swing. He made it this far, he'll survive. ;)
Subscribe to:
Posts (Atom)