"I'm pretty strong but at times I still cry. I get alone in a room and I let it all out and after that I feel better until the time comes where I have to do it all over again..."
Nathan and I had the pleasure of sharing his hospital room with an amazing 11 year old boy named Isaiah. Now for those of you who don't know, the Oncology and Hematology departments are joined at the children's hospital. So a lot of kids there either have cancer or a chronic blood disease. Without getting into too much detail, Isaiah has a blood disease where he doesn't stop bleeding. It's hard to explain but it's very painful, not only does he have times where his blood counts are extremely low which always leaves him at a huge risk for infection but another danger is if he gets a cut he doesn't stop bleeding, and his blood flows differently which can be pretty painful. Now we as parents know our children are going to fall at some point but imagine knowing that if they get the slightest cut, it can mean an extended hospital stay. Truthfully the same goes for Nathan if his blood counts are low, which they often are and it's a very scary filling. Now let me throw a monkey wrench in this story. Isaiah is 11 and has a 21 year old brother with the exact same thing...his parents have been basically living in the hospital for 21 years.
Isaiah was so sweet, he immediately smiled and waved when he entered the room. And he was very caring, Nathan is given a steroid with his chemo. For those of you who don't know, steroids are something else to witness. I know we've all read about people on them but reading and seeing are two different things. Picture your child having a temper tantrum literally all day long. The least little thing is upsetting. For those of you who pride yourselves on being 'strict disciplinarians' well you can throw that crap out the window when your toddler is on a steroid, it doesn't work because they can't control what they're feeling, yelling, whooping, time outs forget it. Anyway that's what was going on on our side of the room and my heart went out to Nathan and Isaiah because I knew they weren't getting any rest. Finally a room opened up and Nathan was able to be moved to his own room and when I went to say goodbye to Isaiah and his mom they literally begged us to stay (no kidding). Isaiah told me "I don't mind, I really don't, I actually would like to come play with him when I'm feeling better." His mother was praying for Nathan and they showed so much compassion.
It was funny because Isaiah's mom was blown away by how calm I was with Nathan as he was screaming and crying from the steroid, she said "I admire the fact that throughout all of that you kept a calm even voice." LOL truthfully it probably sounded better than it looked (she was on the other side of the curtain) and I wish I could pat myself on the back, though I think a lot of the calmness was due to the fact I was in the hospital and not at home where I could 'let loose' and yell or cry lol. I told her how much I admired Isaiah for how he seemed to be handling his illness. It changes all of us and in some ways I don't want to be who I was before this whole ordeal began.
Isaiah's mom told me that no matter how strong she gets, she still breaks down and cry and after she gets it out she feels better. And truthfully the same goes for me. I feel stronger to be honest with you. This cancer has made me stronger as a mom and as a wife. It tore me apart so much to hear this diagnosis that I don't think much else can phase me (though I don't want that statement challenged either). I had a ton of self doubt as a parent and truthfully it used to really hurt my feelings when I'd get questioned on my son's speech and him being 'different.' Nathan's Oncologist said that cancer will change our family, whether our child is a survivor or not it will change us. I'm sure that change isn't complete yet. But I'm slowly starting to become the parent that I always prayed to be. My son isn't perfect but he's absolutely perfect for me and honestly I wouldn't trade him for anything in the world. I know based off of God's word that there's a purpose in all of this madness. Psalm 139 makes that clear. No matter what happens this isn't without purpose. My prayer is that Nathan is healed and will one day stand in front of people and tell them what God did for him. I want to thank people who've always seen the potential in him, who were able to look past his handicap and see Nathan. I want to be like them because they've meant so much in our lives. And truly I look at it different now, if all people see when they look at Nathan is that he's not verbal, well that's their handicapp and their problem.
I had a long talk with Isaiah's mom too. The one thing I'll miss when this is over is the people I've met. Lately when I'm outside of the hospital I feel like a fish out of water. This is something that's shared across the board with other parents of these children. For some reason when we arrive on the hospital floor it's such a mixed feeling of emotions. On one hand there's sadness that we have to keep coming back on the other hand there's a certain indescribable comfort in being around other people who truly 'get' what the other is going through and feeling. One mom asked me, "does this all still feel like a bad dream to you or is it just me?" No, it's all of us. It's a very different environment. There's washers and dryers and everyone pretty much knows everyone else. The nurses, doctors, admins, LPN's, janitors, child life specialist - all become family. Nathan runs and hugs them and they usually kiss the top of his head.
And I'll share this too, I'd already mentioned before that Nathan was diagnosed with Apraxia of speech in April. But even before the cancer diagnosis he's always had speech issues and as parents we used to have the hardest struggles dealing with outside people. Except for a few close family members, most people didn't know how to react to that..."He's not talking yet???!!!!! Is he Autistic???? Does he have behavioral problems???" It was so hard as a parent especially when faced with parents who's children did everything 'early' or 'on time' and they could not grasp the concept that children are different. And I can't begin to tell you the criticism that we faced because of it. Though we were actively getting Nathan tested and help, we were always questioned on "why we weren't doing anything?" (very insulting) We were told what he needed, etc. etc and though all of the advice wasn't bad it was still a struggle. There were only three types of people who were understanding; those who had a child with delayed speech, those who truly understood that God made all of us different and those who were around Nathan for extended periods of time and realized despite his language delays he excelled in every other area.
I get a little emotional at times because when Nathan went into the hospital on January 14th except for close family members it was the first time he was around people who treated him 'normal' from the get go. It's as if they didn't even notice he had a speech delay or didn't care. I remember his first experience with the child life specialist and she was showing him how to use syringes on a toy doll they have and she talked to him just like she would talk to any other child. She didn't slow her speech, or talk extremely loud, or repeat herself over and over, she picked up really quickly that Nathan may have a speech issue but nothing else was wrong with him (except cancer of course). But I always remember her joking saying it only takes one time for Nathan to get something.
Nathan's speech therapist is the exact same way. She's been so patient and caring and he's making huge strides, this last time he was at the hospital for chemo the nurses were blown away at the things he's starting to say. That's another thing that's kind of fun is sharing these precious moments with others. Not many people can be around as he makes his progress so it's kind of exciting to go through this speech process with them. A stranger sees he isn't talking and that's all they can see but they see how far he's come and they're all his cheerleaders :-)
Lately I've been reading Psalm 139. I can't get enough of it. King David is just reveling in the fact that God knows him and it really makes me think of Nathan. Verse 16 is especially precious to me: "...All the days ordained for me were written in your book before one of them came to be." It just reminds me that the Lord formed Nathan for a purpose. All of his speech issues and this cancer, it wasn't hidden from him. Verse 15 says: "My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body."
Dear Lord,
Despite these circumstances I still have so much to be thankful for. I can't thank you enough for the people we've met. I'm so thankful for the people you brought into our lives. I thank you for our 'extended family' who spend so much time with Nathan and see so much in him. I thank you for carrying him this far. So far we've been getting good news about his treatments working and Lord I'm so very thankful for that. Thank you for this hospital being so close. Thank you that he spends a lot of time at home especially since we know families who spend a months at a time in the hospital.
Lord thank you for my family and friends who've rallied around us. Lord I thank you for the lessons learned, I hate we had to learn them this way and I secretly wonder if this is the only way in which we could've learned them.
Lord I pray that you continue to give us strength and wisdom and when I say 'us' I mean all of the parents going through sickness with their children. It's rough and strength is really needed. I'm so thankful I serve a God like you. I know you understand our suffering and I know you're near and that you know us so well. You know Nathan better than we do and I'm so thankful for that. When he's upset you understand his pain, when he's happy you share in his joy, when he has fear you calm him down. Lord thank you so much.
In Jesus Name
Amen
Isaiah was so sweet, he immediately smiled and waved when he entered the room. And he was very caring, Nathan is given a steroid with his chemo. For those of you who don't know, steroids are something else to witness. I know we've all read about people on them but reading and seeing are two different things. Picture your child having a temper tantrum literally all day long. The least little thing is upsetting. For those of you who pride yourselves on being 'strict disciplinarians' well you can throw that crap out the window when your toddler is on a steroid, it doesn't work because they can't control what they're feeling, yelling, whooping, time outs forget it. Anyway that's what was going on on our side of the room and my heart went out to Nathan and Isaiah because I knew they weren't getting any rest. Finally a room opened up and Nathan was able to be moved to his own room and when I went to say goodbye to Isaiah and his mom they literally begged us to stay (no kidding). Isaiah told me "I don't mind, I really don't, I actually would like to come play with him when I'm feeling better." His mother was praying for Nathan and they showed so much compassion.
It was funny because Isaiah's mom was blown away by how calm I was with Nathan as he was screaming and crying from the steroid, she said "I admire the fact that throughout all of that you kept a calm even voice." LOL truthfully it probably sounded better than it looked (she was on the other side of the curtain) and I wish I could pat myself on the back, though I think a lot of the calmness was due to the fact I was in the hospital and not at home where I could 'let loose' and yell or cry lol. I told her how much I admired Isaiah for how he seemed to be handling his illness. It changes all of us and in some ways I don't want to be who I was before this whole ordeal began.
Isaiah's mom told me that no matter how strong she gets, she still breaks down and cry and after she gets it out she feels better. And truthfully the same goes for me. I feel stronger to be honest with you. This cancer has made me stronger as a mom and as a wife. It tore me apart so much to hear this diagnosis that I don't think much else can phase me (though I don't want that statement challenged either). I had a ton of self doubt as a parent and truthfully it used to really hurt my feelings when I'd get questioned on my son's speech and him being 'different.' Nathan's Oncologist said that cancer will change our family, whether our child is a survivor or not it will change us. I'm sure that change isn't complete yet. But I'm slowly starting to become the parent that I always prayed to be. My son isn't perfect but he's absolutely perfect for me and honestly I wouldn't trade him for anything in the world. I know based off of God's word that there's a purpose in all of this madness. Psalm 139 makes that clear. No matter what happens this isn't without purpose. My prayer is that Nathan is healed and will one day stand in front of people and tell them what God did for him. I want to thank people who've always seen the potential in him, who were able to look past his handicap and see Nathan. I want to be like them because they've meant so much in our lives. And truly I look at it different now, if all people see when they look at Nathan is that he's not verbal, well that's their handicapp and their problem.
I had a long talk with Isaiah's mom too. The one thing I'll miss when this is over is the people I've met. Lately when I'm outside of the hospital I feel like a fish out of water. This is something that's shared across the board with other parents of these children. For some reason when we arrive on the hospital floor it's such a mixed feeling of emotions. On one hand there's sadness that we have to keep coming back on the other hand there's a certain indescribable comfort in being around other people who truly 'get' what the other is going through and feeling. One mom asked me, "does this all still feel like a bad dream to you or is it just me?" No, it's all of us. It's a very different environment. There's washers and dryers and everyone pretty much knows everyone else. The nurses, doctors, admins, LPN's, janitors, child life specialist - all become family. Nathan runs and hugs them and they usually kiss the top of his head.
And I'll share this too, I'd already mentioned before that Nathan was diagnosed with Apraxia of speech in April. But even before the cancer diagnosis he's always had speech issues and as parents we used to have the hardest struggles dealing with outside people. Except for a few close family members, most people didn't know how to react to that..."He's not talking yet???!!!!! Is he Autistic???? Does he have behavioral problems???" It was so hard as a parent especially when faced with parents who's children did everything 'early' or 'on time' and they could not grasp the concept that children are different. And I can't begin to tell you the criticism that we faced because of it. Though we were actively getting Nathan tested and help, we were always questioned on "why we weren't doing anything?" (very insulting) We were told what he needed, etc. etc and though all of the advice wasn't bad it was still a struggle. There were only three types of people who were understanding; those who had a child with delayed speech, those who truly understood that God made all of us different and those who were around Nathan for extended periods of time and realized despite his language delays he excelled in every other area.
I get a little emotional at times because when Nathan went into the hospital on January 14th except for close family members it was the first time he was around people who treated him 'normal' from the get go. It's as if they didn't even notice he had a speech delay or didn't care. I remember his first experience with the child life specialist and she was showing him how to use syringes on a toy doll they have and she talked to him just like she would talk to any other child. She didn't slow her speech, or talk extremely loud, or repeat herself over and over, she picked up really quickly that Nathan may have a speech issue but nothing else was wrong with him (except cancer of course). But I always remember her joking saying it only takes one time for Nathan to get something.
Nathan's speech therapist is the exact same way. She's been so patient and caring and he's making huge strides, this last time he was at the hospital for chemo the nurses were blown away at the things he's starting to say. That's another thing that's kind of fun is sharing these precious moments with others. Not many people can be around as he makes his progress so it's kind of exciting to go through this speech process with them. A stranger sees he isn't talking and that's all they can see but they see how far he's come and they're all his cheerleaders :-)
Lately I've been reading Psalm 139. I can't get enough of it. King David is just reveling in the fact that God knows him and it really makes me think of Nathan. Verse 16 is especially precious to me: "...All the days ordained for me were written in your book before one of them came to be." It just reminds me that the Lord formed Nathan for a purpose. All of his speech issues and this cancer, it wasn't hidden from him. Verse 15 says: "My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body."
Dear Lord,
Despite these circumstances I still have so much to be thankful for. I can't thank you enough for the people we've met. I'm so thankful for the people you brought into our lives. I thank you for our 'extended family' who spend so much time with Nathan and see so much in him. I thank you for carrying him this far. So far we've been getting good news about his treatments working and Lord I'm so very thankful for that. Thank you for this hospital being so close. Thank you that he spends a lot of time at home especially since we know families who spend a months at a time in the hospital.
Lord thank you for my family and friends who've rallied around us. Lord I thank you for the lessons learned, I hate we had to learn them this way and I secretly wonder if this is the only way in which we could've learned them.
Lord I pray that you continue to give us strength and wisdom and when I say 'us' I mean all of the parents going through sickness with their children. It's rough and strength is really needed. I'm so thankful I serve a God like you. I know you understand our suffering and I know you're near and that you know us so well. You know Nathan better than we do and I'm so thankful for that. When he's upset you understand his pain, when he's happy you share in his joy, when he has fear you calm him down. Lord thank you so much.
In Jesus Name
Amen
While I've never been in your situation, I do know a bit about how it feels to worry about your child. Reading your posts take me back to a time when I was feeling some of the same things you are. . . back to when I had given birth to twins way too early. . when I had to say goodbye to one & had no idea if the other would make it.
ReplyDeleteAnyway, I just wanted to say that I can feel your strength & love for your family in everything that you write.
I admire that & the fact that you are able to write about it...especially while you are still living through it.
You are an amazing person & your family will stay in my prayers
Thank you so much for the encouragement Aisha!!!!! (I love the HappyToBeNappy name btw) You were an inspiration to me when you first told me about your twins back when we first reconnected on FB. At that time I had no clue what was ahead with Nathan.
ReplyDeleteI really take to heart all of the things you say, It's hard to explain but when encouragement or advice comes from someone who's also been through a heavy situation in life it means so much, I tend to perk up and listen because I know you know of what you speak!
God Bless