I am a stay at home Mom. I am also an author. I am also in the process of radically changing my life by living in better obedience to the person God has called me to be. It sounds complicated but it isn't, it's yielding to His will for my life- not fighting for the life I think I should be living.
Oh I still have plans and hopes and dreams, I haven't turned all that in for a life of silence and obscurity. For the past several months, since the writing of: Human, being— I've been living my life more out loud than ever. I'm not going to stop where I am either.
For those of you that follow this blog regularly know that not only am I a stay at home Mom of 3, I am also a special needs Mom. Being a special needs Mom is a tall order, to say the very least. It's a call to be dynamic; on the fly, flexible and thrifty. My husband says, "Special needs means extra pillows and blankets." Ha! It is true, Cookiepants is usually cozied in amidst a pile of pillows and blankets. So, when Cookiepants needs something it usually means- now! I have to be ready around the clock because we never know what the day will hold.
As a stay at home Mom, I am always on the clock. I don't get to punch out and leave my work at work. Work is also home or anywhere else I go. I never thought I would embrace motherhood the way I have and I certainly never thought I would embrace being a special needs Mom the way I have either. I love being a mom, even with all of it's typical challenges and even the other the top challenges. I know beyond a shadow of a doubt that God is who has filled my heart unto over flowing for my children. I know that God has strengthened me each and every single day. I know that the days I confessed to Jesus that I just couldn't do it anymore today, He was the one who sat beside me and took over.
So many nights I've flopped into my bed with the morning light peeking through the window and the alarm was set to go off soon. So many morning fueled by caffeine and a hearty breakfast. It has been this love that my heart is filled with that has spurred me on. The kind of love that only God could fill my heart with, a love that never runs out and only grows.
I think being a stay at home mom may be one of the most under rated "jobs" there is. Sure there are days where I scarcely get housework done but I've taken a new approach there too. But just because it didn't get done doesn't mean I sat on my rump eating fine chocolates and drinking wine while the kids ran a muck. It simply means I was too busy with the kids and it wasn't necessary for me to cause myself to feel overwhelmed. Our enemy wants us to feel overwhelmed but God wants us to have peace in the midst of chaos and busyness. We don't have to get all crazy getting busy around the house. Yes, absolutely take care of your home, you are the steward of your home. But moving about at break neck speeds and completely exhausting yourself isn't the way to go about it.
Take one thing at a time and in stride with the day. If the kids are pretty chill, push to get a bit more done. If they're nuts, you may be best off waiting until nap time or bedtime. I refuse to be that flop into bed mommy at the end of a typical day and I refuse to have guilt about the things I didn't get done either. It's over, the enemy loses. There isn't anywhere in the Bible that says I need to drive myself nuts doing everything just so I can be a good Mom. Read Proverbs 31, it's a lovely depiction of a wife and mother. It's what I strive to be but not by my own doing, by allowing God's work within me to shine through brightly. Not the person I think I should be. Not the Mom I think I should be. Not the Christian I think I should be. Just simply the woman God is molding me into being. And if that woman doesn't look like the woman I thought I ought to be, all the more better because God's choice is far better than I can ever express into words.
Don't be a strung out Mom, allow and make room for the Mom God wants you to be. Allow Him to mold you. Allow Him to have His way. Listen to His promptings, listen to His gentle call. He loves you and knows you better than you know yourself. Oh He is so good, dear friends.
Much love and wishing you a blessed day!
Showing posts with label kids. Show all posts
Showing posts with label kids. Show all posts
Monday, March 6, 2017
Monday, January 2, 2017
We're still here!
2016 gave us white knuckles at times, barely holding onto much of anything and certainly not ourselves. Once again it was another year of learning; trial/error, crashing and burning too. It was a year of sitting and watching as those around us were living their lives while it felt like we were living someone else's.
We watched families lose loved ones and mourned with them. While at the same time we gained an addition to our family and rejoiced in God's goodness. We watched milestones met, with the realization that others were surpassed a long time ago. At times the reality of it was overwhelming and other times we simply celebrated where we are. We are whatever we are, whatever that is. We're here, we're alive and we're still breathing. While there may have been many things that were meant to harm us, with tear stricken faces as times we still praised. God is still good. Even when we haven't understood, God is still good.
If 2016 taught me anything it was a continue to praise even when I don't feel like it and also not to get comfortable with my plans. There isn't much that happened in 2016 that happened just as we planned. Judah came into the world quietly and gently, healing parts of my ever broken heart. Cookiepants decided that she would hold her own bottle the day we brought her brother home from the hospital. Another thing I learned is that help comes from the most unexpected places and people. And the ones you would believe would be there scatter still. I'm not mad though, it's just life and it's all a part of God's grand plan. I know that He is sovereign over that part of our life too. Sometimes old friends are drawn back together while others drift further away. I've learned not to count on anything but God's hand in this life, who He draws near.
He has been faithful when I haven't been, He's loved me when I was unlovable. Jesus has been there every step of the way. There were many times I felt alone or overwhelmed, you'll have that with this set of circumstances... I'm still learning that, everyday.
I've finally come around to the concept of making some plans and having dreams and hopes again. Those things were dashed away a few years ago, all felt lost. I am often reminded, because we're still here that God has a plan for our life. A plan to prosper us and not to harm us. I'm comforted by that. There were times where I just about scoffed at that scripture in my darker moments. But I've learned that even when it's hard to believe, I must believe.
One thing I must carry into 2017 is the knowledge that plans and dreams are fine and good, they give me something to strive toward. But God ultimately determines where we go and who we're with. We will continue to make plans for the future and pray that they turn out better than we had hoped for. God is capable to knitting things together for our life far grander than anything that we could ever dream up or imagine. Oh how wonderful does that sound!?
I'm looking forward to 2017 and all that it has to offer, I'm hoping there won't be so many bumps and bruises this year but this is life and those happen. They hurt, often badly... I just have to remember to feel them instead of just tossing those feeling aside. I am only human after all, though most of the time, my obligations should be assigned to someone who is super human. But God takes care of that piece too, filling me with His strength. I know that I can't go a day without Him.
The end of 2016 felt like a tidal wave of sewing up gaps and it hit pretty hard. The week of Christmas especially. I praised as I held my cat for the last time. I praised as I waited in the waiting room for Cookiepants to get out of surgery. We praised as Cookiepants opened Christmas gifts for the first time ever, as did Judah. It was adorable. It was quiet and it was just the four of us, just as God intended I guess. We sat in our Christmas light lit home, watching old movies, enjoying one another's company and holding each other close. Just as we were supposed to.
There is nothing else that could have taught us to love one another and appreciate each other the way that we do. Whatever we have been through has gotten us here and whether it was "good or bad" we wouldn't be the same without it. I wouldn't love and admire my husband the way I do today had it not been for everything we've been through together. When Judah calls out for his "mama," it wouldn't sound as sweet as it does had it not been for nonverbal cues from Cookiepants. One day we will appreciate a bigger home that much more, after having lived in a home that we're convinced we've out grown. And winter (don't get me started) I'll soon appreciate the meaning of winter one day when we move somewhere more temperate. It's all there, it's all in the plan. But mostly, I recognize it's not my plan. And I can't look back and state without a doubt that this or that happened because I needed to learn this. But what I do know, I'm just going to trust Him in this new year. I'm going to try and press into Him harder and when I want to throw my hands up in agony and give up- that's when I just need to drop to my knees and pray/praise. Truth be told, I just don't know... I can't see tomorrow. I don't know what I'm going to do next week or even what I'm going to eat for lunch tomorrow.
So here I am. I'm waiting and I'm watching and I'm praying. He see's me. He hears me and He knows. He know's the desires of my heart.
Thank you to those of you who are still here or who I've had the great pleasure of reconnecting with. And to those who have fallen behind- if you have to think about it, yeah, it's probably you... But to you, we were what we were for a time and that is all. And I'm grateful for what it was because it was all a part of this wonderful web called life.
2017, here we come!
God bless.
We watched families lose loved ones and mourned with them. While at the same time we gained an addition to our family and rejoiced in God's goodness. We watched milestones met, with the realization that others were surpassed a long time ago. At times the reality of it was overwhelming and other times we simply celebrated where we are. We are whatever we are, whatever that is. We're here, we're alive and we're still breathing. While there may have been many things that were meant to harm us, with tear stricken faces as times we still praised. God is still good. Even when we haven't understood, God is still good.
If 2016 taught me anything it was a continue to praise even when I don't feel like it and also not to get comfortable with my plans. There isn't much that happened in 2016 that happened just as we planned. Judah came into the world quietly and gently, healing parts of my ever broken heart. Cookiepants decided that she would hold her own bottle the day we brought her brother home from the hospital. Another thing I learned is that help comes from the most unexpected places and people. And the ones you would believe would be there scatter still. I'm not mad though, it's just life and it's all a part of God's grand plan. I know that He is sovereign over that part of our life too. Sometimes old friends are drawn back together while others drift further away. I've learned not to count on anything but God's hand in this life, who He draws near.
He has been faithful when I haven't been, He's loved me when I was unlovable. Jesus has been there every step of the way. There were many times I felt alone or overwhelmed, you'll have that with this set of circumstances... I'm still learning that, everyday.
I've finally come around to the concept of making some plans and having dreams and hopes again. Those things were dashed away a few years ago, all felt lost. I am often reminded, because we're still here that God has a plan for our life. A plan to prosper us and not to harm us. I'm comforted by that. There were times where I just about scoffed at that scripture in my darker moments. But I've learned that even when it's hard to believe, I must believe.
One thing I must carry into 2017 is the knowledge that plans and dreams are fine and good, they give me something to strive toward. But God ultimately determines where we go and who we're with. We will continue to make plans for the future and pray that they turn out better than we had hoped for. God is capable to knitting things together for our life far grander than anything that we could ever dream up or imagine. Oh how wonderful does that sound!?
I'm looking forward to 2017 and all that it has to offer, I'm hoping there won't be so many bumps and bruises this year but this is life and those happen. They hurt, often badly... I just have to remember to feel them instead of just tossing those feeling aside. I am only human after all, though most of the time, my obligations should be assigned to someone who is super human. But God takes care of that piece too, filling me with His strength. I know that I can't go a day without Him.
The end of 2016 felt like a tidal wave of sewing up gaps and it hit pretty hard. The week of Christmas especially. I praised as I held my cat for the last time. I praised as I waited in the waiting room for Cookiepants to get out of surgery. We praised as Cookiepants opened Christmas gifts for the first time ever, as did Judah. It was adorable. It was quiet and it was just the four of us, just as God intended I guess. We sat in our Christmas light lit home, watching old movies, enjoying one another's company and holding each other close. Just as we were supposed to.
There is nothing else that could have taught us to love one another and appreciate each other the way that we do. Whatever we have been through has gotten us here and whether it was "good or bad" we wouldn't be the same without it. I wouldn't love and admire my husband the way I do today had it not been for everything we've been through together. When Judah calls out for his "mama," it wouldn't sound as sweet as it does had it not been for nonverbal cues from Cookiepants. One day we will appreciate a bigger home that much more, after having lived in a home that we're convinced we've out grown. And winter (don't get me started) I'll soon appreciate the meaning of winter one day when we move somewhere more temperate. It's all there, it's all in the plan. But mostly, I recognize it's not my plan. And I can't look back and state without a doubt that this or that happened because I needed to learn this. But what I do know, I'm just going to trust Him in this new year. I'm going to try and press into Him harder and when I want to throw my hands up in agony and give up- that's when I just need to drop to my knees and pray/praise. Truth be told, I just don't know... I can't see tomorrow. I don't know what I'm going to do next week or even what I'm going to eat for lunch tomorrow.
So here I am. I'm waiting and I'm watching and I'm praying. He see's me. He hears me and He knows. He know's the desires of my heart.
Thank you to those of you who are still here or who I've had the great pleasure of reconnecting with. And to those who have fallen behind- if you have to think about it, yeah, it's probably you... But to you, we were what we were for a time and that is all. And I'm grateful for what it was because it was all a part of this wonderful web called life.
2017, here we come!
God bless.
Tuesday, May 17, 2016
The American Farmacy part 2
I had committed to posting an update whether anyone wanted to read it or not, so just deal with it... haha. Kidding, kidding. You guys know I'm not that mean.
So after two weeks of eating Vegan, I'm beginning to feel better. I think I've actually been detoxing from what little dairy I had left in my diet. And I think my body was a little confused when I started giving it non-animal protein too. No ill effects though, so that's been fantastic.
I immediately noticed a change in my energy level, I don't seem to hit that 2:30 in the afternoon lull where I just want to pass out. I also used to hit another wall around 8pm where I was just done but of course, having little ones- that isn't possible. Any of you who have read past blogs, you would know I have a pretty demanding lifestyle, even though I don't go many places- at least not lately. I have a 3 1/2 month old and a special needs 2 year old. I need a desperate amount of energy.
I embarked on this journey not only for myself but also for them. I wanted to revolutionize the way my family sees food and the way we eat it. I wanted to replace the pharmacy with a farmacy. Our food being our medicine. So far, after all I've read and applying it to myself I think it's going to work out just fine.
I'd been riddled with stomach problems since I was 8 years old, I understand now more than ever why. It's been the food I was eating. We just don't seem to be designed to eat meat, granted, it seems a lot of us have adapted to it though. Since I've switched to an all plant based diet, which is a life style change, rather than a diet (I don't do diets) I haven't had acid reflux even once. And without trying I've lost 6 pounds.
This week, I've decided I'm going to try at least 2 new vegetables and continue to do so as the weeks pass. I was never much for veggies unless they were soaked in cheese when I was younger. But now that I've been eating them consistently, I actually want more of them. I've gone back to eating nut mixes and seeds again, which I enjoy. They're a good source of protein, calcium and good fats.
One day, hopefully sooner than later, we'll have a large yard where the majority of it will be a garden. It's something I'm looking forward to. For now, my little patio garden will have to do, alongside the local organic food store.
I feel blessed to have stumbled upon this new lifestyle, I had never intended on going vegan but I'm glad that I did. Based on what I've seen, read and watched, things can only get better from here on out. My next step is more exercise, yoga is working for me for right now but I know I need to get out there and just move more.
My life has literally been on lock down for the last 3 years between 2 pregnancies and taking care of one special needs baby and now a new born. Whew... It's exhausting just thinking about it... But I'm gonna do it and we're gonna do it together. My little guy is getting bigger and seemingly more social. My two year old really likes getting out of the house but sometimes has complete melt downs. Guess it comes with the territory, so there will be some planning involved. Most of all, I'm just determined.
So after two weeks of eating Vegan, I'm beginning to feel better. I think I've actually been detoxing from what little dairy I had left in my diet. And I think my body was a little confused when I started giving it non-animal protein too. No ill effects though, so that's been fantastic.
I immediately noticed a change in my energy level, I don't seem to hit that 2:30 in the afternoon lull where I just want to pass out. I also used to hit another wall around 8pm where I was just done but of course, having little ones- that isn't possible. Any of you who have read past blogs, you would know I have a pretty demanding lifestyle, even though I don't go many places- at least not lately. I have a 3 1/2 month old and a special needs 2 year old. I need a desperate amount of energy.
I embarked on this journey not only for myself but also for them. I wanted to revolutionize the way my family sees food and the way we eat it. I wanted to replace the pharmacy with a farmacy. Our food being our medicine. So far, after all I've read and applying it to myself I think it's going to work out just fine.
I'd been riddled with stomach problems since I was 8 years old, I understand now more than ever why. It's been the food I was eating. We just don't seem to be designed to eat meat, granted, it seems a lot of us have adapted to it though. Since I've switched to an all plant based diet, which is a life style change, rather than a diet (I don't do diets) I haven't had acid reflux even once. And without trying I've lost 6 pounds.
This week, I've decided I'm going to try at least 2 new vegetables and continue to do so as the weeks pass. I was never much for veggies unless they were soaked in cheese when I was younger. But now that I've been eating them consistently, I actually want more of them. I've gone back to eating nut mixes and seeds again, which I enjoy. They're a good source of protein, calcium and good fats.
One day, hopefully sooner than later, we'll have a large yard where the majority of it will be a garden. It's something I'm looking forward to. For now, my little patio garden will have to do, alongside the local organic food store.
I feel blessed to have stumbled upon this new lifestyle, I had never intended on going vegan but I'm glad that I did. Based on what I've seen, read and watched, things can only get better from here on out. My next step is more exercise, yoga is working for me for right now but I know I need to get out there and just move more.
My life has literally been on lock down for the last 3 years between 2 pregnancies and taking care of one special needs baby and now a new born. Whew... It's exhausting just thinking about it... But I'm gonna do it and we're gonna do it together. My little guy is getting bigger and seemingly more social. My two year old really likes getting out of the house but sometimes has complete melt downs. Guess it comes with the territory, so there will be some planning involved. Most of all, I'm just determined.
Tuesday, July 29, 2014
Partial Trisomy 9 & 12
It was exciting being pregnant. It seems like it takes an eternity to meet your new baby but it is well worth the wait. Even the labor is worth it, in hind sight of course. While in the midst of it you can think of a hundred things you would rather be doing, that are probably a lot more fun. Bringing Lily into the world was especially painful. Pain I can't even begin to describe. Thinking back on it now I am shocked I even made it through that...
She didn't cry when she was born. The whole room fell silent except for a few suspicious whispers. After what felt like forever a very raspy cry rang throughout the room. What a relief, we couldn't help but cry too. She was nearly as blue as a summer sky. They wrapped her up in blankets and laid her on my chest. Oh what a beautiful little blessing she was. Our little angel, we finally got to meet her...
The doctor and nurses were clued in by a few of Lily's abnormalities right away. Her little pinkies and pointer fingers didn't look right, they were turned in. Both of her feet were different. Also they later told me her hip was hyper-extended upon birth too. They gave her oxygen upon coming out and has to resuscitate her to some degree too. All of this I found out later, rather than while it was going on. Her blood sugar was low too. They took her to the NICU unit. Our first meeting was brief which made me feel very worried and sad.
I didn't get around to going and visiting her until nearly 9 in the morning. She had been born at 4:30 am. I held her close and prayed over her, no one had answers as to why she needed to be under extra special care. My husband had been able to go and be with her for a while and so did my mom. Now I finally got to hold the little baby that I had been carrying in my belly for 9 months. And even though there was something "wrong" with her, she was all together perfect to me. She was beautiful!
The doctors ran various tests on her, they sent out for genetics testing; did x-rays, ultrasounds, blood work. I had prayed that her "abnormalities" her because of how she was positioned in my belly. As the test results continued to come back normal, we were grateful but still miffed as to why the great concern. In the meantime, Lily continued to need sugar water in an IV. Then she spiked a temperature out of no where. So they put her on antibiotics, they also tested her for meningitis and ran more blood work. The thought of them tapping into her spine with a needle made me shutter. She was only a few days old when I was able to go home.
We were all too eager to go home. It was difficult for us to be in the hospital where our privacy was completely compromised. We had no down time to try and sort through how we were feeling. Lily's future felt so up in the air and so did ours. We packed up our things, knowing that we weren't going to be able to take our baby home. It didn't hit me until I was sitting in my wheel chair waiting for my husband to pull the car around. I lost it. I had a diaper bag. Greeting cards that said congratulations, a couple of balloons, the infant seat was in the car. But we had no baby. I had seen other mothers in the elevator leave with their new baby and even congratulated them. I meant it too... Here it was our time to go home and we had no baby. Thankfully I had a wonderful nurse that latched onto me and hugged me until my husband came around with the car. I was a sobbing mess. How could I not see this coming? -That I would handle this so badly. That was one of the emptiest feelings I can ever recall having in my life.
We needed rest. We rested when we could. We spent a lot of time up at the hospital. I couldn't imagine not spending time with Lily. We fed her bottles. We bathed her. We changed diapers. We listened to music and read to her. By her 5th day in the hospital she wasn't able to keep enough oxygen in her blood, so it was decided that she needed some oxygen. The put a canula on her. Yet another blow to the hope that we had that she was going to come home with us soon. They were able to get her off the sugar water, so her IV was removed but now we had a new cord to contend with, the oxygen line. She also had a bout with jaundice. Up until this point we had tried to keep as light hearted as possible. While she was on the billi blanket we had said that she looked like a glow worm. She was terribly cute...
Its now sunday, 6 days in the hospital. We got a phone call wondering what time we were going to be in to see Lily. When we got to the hospital, the resident doctor had wanted to talk with us before he left. So, my husband and I, the doctor, and two nurses went into the family room. Doc was holding a few pieces of paper in his hand. I think my husband and I knew this was it. We were going to get answers today. Lily's genetic testing had come back. The doctor explained everything as thoroughly as possible, at least what he knew about it. Lily was diagnosed with Trisomy 9 partial, a very rare chromosome abnormality. When we got the news it felt like more of a death sentence than anything else. There was no inflection of hope in most of the words that followed. I felt myself go into shock. I felt like i was in the midst of a nightmare, I wanted to wake up so badly but this was it, this was our new reality. The only thing that came to mind at the moment, was what are we supposed to do, as her parents. So I asked the doctor. his reply made a world of a difference to both of us, "just love her" was all he said. That was all he needed to say.
They left us to sort through our feelings for a few minutes. My husband, being the loving man that he is, began to research immediately. He wanted to know what we had on our hands. The internet had information but given the exact mixture or my genes and my husbands genes there is no way to tell how Lily will do. Even now, we just don't know. That Sunday night I went back to the hospital alone to be with Lily. I needed to. My husband needed sometime alone to work through what he was feeling too.
I got to the hospital and washed my hands, I could see she was sleeping. I just wanted to hold her. The nurse and I moved the recliner over to her area so I could recline with her zipped into my hoodie as I had already done so many times before. I tucked her in, laid my head back and prayed. I prayed silently and I prayed out loud. I told God I knew that she was His before she was mine and that I'd like for her to stay with us here on earth if it was His will. But also that if it was't His will for her to stay that I knew He would get us through it. I could feel the tears streaming down my face again, silently. Even though everything about her birth was un usual and difficult, I still had a peace when I was with her. There was something about holding her near to my heart that seemed to make the noise in the world just disappear. The diagnosis disappeared. The sadness; the fear, the anguish I was feeling inside. I felt like my heart was ripped out that day but when I was with Lily, holding her, it went away, at least for a little while. Even though I had been crying, I still wanted the nurse to take a picture of us together. I wanted any moment I had with her caught on camera because we just didn't know. We didn't know if she was going to pull through this. The outlook looked so grim and no one was giving us any reason to believe otherwise. Except for Lily herself.
I felt better about everything after that night. I felt like I had to lay her at the foot of the cross once more to even have the hope of being able to keep her. Many days since that wonderful doctor said "just love her," that has been the words that my heart has uttered too. Lily spent a total of 10 days in the NICU. She had some fantastic nurses that looked after her and cared for her. I am thoroughly convinced they are God's ordained bunch to do what they do. There were a couple that especially touched our heart. Bringing Lily home was no small feat. I had to re-learn CPR. We stayed over night in the hospital again with her to see how we handled her being on oxygen and a pulse ox monitor. It didn't go that well. I slept for maybe a total of 20 minutes all night.My husband didn't sleep much more than I did either. Nervous I guess.
I was terrified at the idea of bringing her home on oxygen but there was no other reason that she need to be in the hospital at this point. We had a long list of follow up appointments to schedule. We had a list of instructions and phone numbers. We really had everything that we needed to care for her at home. Lily had been losing weight and not gaining it back in the hospital, even being on a higher calorie formula. We were also faced with the threat of failure to thrive. My husband and I were convinced we could turn that around upon bringing her home.
It had been painful looking upon her in the hospital hooked up to all of these machines and oxygen and and IV. We felt helpless. We were frustrated and angry even. I just couldn't wrap my head around why a new little person could be so broken. When you purchase something at the store, it's new. It's in the best shape it's going to be in- ever. I can't tell you why this happened to us or why it happens to anyone. It was something that was completely out of our hands. It was something that happened the moment Lily's cells began to divide. There was nothing we could do that could have impacted the outcome. Now, there is so much that we can do to make a difference in the outcome. Not one of us knows how long we're going to be here but we can surely make the best of what time we have. I could choose to live my life angry that this ever happened in the first place. That anger would spill over into my family and the amazing privilege I have in taking care of them. Was this what I would have planned for my life? No... I don't think anyone would. Am I grateful now? Some days are easier than others. I am immensely grateful for Lily, I wouldn't trade her for a different child. She is an absolute miracle and wonder to us. There are a few things I do know. My husband and I were chosen to care for Lily. I will take that as a high honor to be able to care for such an amazing and special little girl like her. The other thing I know is that we have today... Today we are together, today she is alive and thriving. She has already over come so many obstacles. She is already a medical mystery and I pray she continues to blow doctor's away with her progress.
Jesus said that we will have struggles and trouble in this life. He wasn't kidding. I do know that if it weren't for Him and the strength we find in Him we wouldn't make it through most days. He also said not to worry about tomorrow because tomorrow already has enough worry of its own. So, we must make a conscious effort to stay in today.
She didn't cry when she was born. The whole room fell silent except for a few suspicious whispers. After what felt like forever a very raspy cry rang throughout the room. What a relief, we couldn't help but cry too. She was nearly as blue as a summer sky. They wrapped her up in blankets and laid her on my chest. Oh what a beautiful little blessing she was. Our little angel, we finally got to meet her...
The doctor and nurses were clued in by a few of Lily's abnormalities right away. Her little pinkies and pointer fingers didn't look right, they were turned in. Both of her feet were different. Also they later told me her hip was hyper-extended upon birth too. They gave her oxygen upon coming out and has to resuscitate her to some degree too. All of this I found out later, rather than while it was going on. Her blood sugar was low too. They took her to the NICU unit. Our first meeting was brief which made me feel very worried and sad.
I didn't get around to going and visiting her until nearly 9 in the morning. She had been born at 4:30 am. I held her close and prayed over her, no one had answers as to why she needed to be under extra special care. My husband had been able to go and be with her for a while and so did my mom. Now I finally got to hold the little baby that I had been carrying in my belly for 9 months. And even though there was something "wrong" with her, she was all together perfect to me. She was beautiful!
The doctors ran various tests on her, they sent out for genetics testing; did x-rays, ultrasounds, blood work. I had prayed that her "abnormalities" her because of how she was positioned in my belly. As the test results continued to come back normal, we were grateful but still miffed as to why the great concern. In the meantime, Lily continued to need sugar water in an IV. Then she spiked a temperature out of no where. So they put her on antibiotics, they also tested her for meningitis and ran more blood work. The thought of them tapping into her spine with a needle made me shutter. She was only a few days old when I was able to go home.
We were all too eager to go home. It was difficult for us to be in the hospital where our privacy was completely compromised. We had no down time to try and sort through how we were feeling. Lily's future felt so up in the air and so did ours. We packed up our things, knowing that we weren't going to be able to take our baby home. It didn't hit me until I was sitting in my wheel chair waiting for my husband to pull the car around. I lost it. I had a diaper bag. Greeting cards that said congratulations, a couple of balloons, the infant seat was in the car. But we had no baby. I had seen other mothers in the elevator leave with their new baby and even congratulated them. I meant it too... Here it was our time to go home and we had no baby. Thankfully I had a wonderful nurse that latched onto me and hugged me until my husband came around with the car. I was a sobbing mess. How could I not see this coming? -That I would handle this so badly. That was one of the emptiest feelings I can ever recall having in my life.
We needed rest. We rested when we could. We spent a lot of time up at the hospital. I couldn't imagine not spending time with Lily. We fed her bottles. We bathed her. We changed diapers. We listened to music and read to her. By her 5th day in the hospital she wasn't able to keep enough oxygen in her blood, so it was decided that she needed some oxygen. The put a canula on her. Yet another blow to the hope that we had that she was going to come home with us soon. They were able to get her off the sugar water, so her IV was removed but now we had a new cord to contend with, the oxygen line. She also had a bout with jaundice. Up until this point we had tried to keep as light hearted as possible. While she was on the billi blanket we had said that she looked like a glow worm. She was terribly cute...
Its now sunday, 6 days in the hospital. We got a phone call wondering what time we were going to be in to see Lily. When we got to the hospital, the resident doctor had wanted to talk with us before he left. So, my husband and I, the doctor, and two nurses went into the family room. Doc was holding a few pieces of paper in his hand. I think my husband and I knew this was it. We were going to get answers today. Lily's genetic testing had come back. The doctor explained everything as thoroughly as possible, at least what he knew about it. Lily was diagnosed with Trisomy 9 partial, a very rare chromosome abnormality. When we got the news it felt like more of a death sentence than anything else. There was no inflection of hope in most of the words that followed. I felt myself go into shock. I felt like i was in the midst of a nightmare, I wanted to wake up so badly but this was it, this was our new reality. The only thing that came to mind at the moment, was what are we supposed to do, as her parents. So I asked the doctor. his reply made a world of a difference to both of us, "just love her" was all he said. That was all he needed to say.
They left us to sort through our feelings for a few minutes. My husband, being the loving man that he is, began to research immediately. He wanted to know what we had on our hands. The internet had information but given the exact mixture or my genes and my husbands genes there is no way to tell how Lily will do. Even now, we just don't know. That Sunday night I went back to the hospital alone to be with Lily. I needed to. My husband needed sometime alone to work through what he was feeling too.
I got to the hospital and washed my hands, I could see she was sleeping. I just wanted to hold her. The nurse and I moved the recliner over to her area so I could recline with her zipped into my hoodie as I had already done so many times before. I tucked her in, laid my head back and prayed. I prayed silently and I prayed out loud. I told God I knew that she was His before she was mine and that I'd like for her to stay with us here on earth if it was His will. But also that if it was't His will for her to stay that I knew He would get us through it. I could feel the tears streaming down my face again, silently. Even though everything about her birth was un usual and difficult, I still had a peace when I was with her. There was something about holding her near to my heart that seemed to make the noise in the world just disappear. The diagnosis disappeared. The sadness; the fear, the anguish I was feeling inside. I felt like my heart was ripped out that day but when I was with Lily, holding her, it went away, at least for a little while. Even though I had been crying, I still wanted the nurse to take a picture of us together. I wanted any moment I had with her caught on camera because we just didn't know. We didn't know if she was going to pull through this. The outlook looked so grim and no one was giving us any reason to believe otherwise. Except for Lily herself.
I felt better about everything after that night. I felt like I had to lay her at the foot of the cross once more to even have the hope of being able to keep her. Many days since that wonderful doctor said "just love her," that has been the words that my heart has uttered too. Lily spent a total of 10 days in the NICU. She had some fantastic nurses that looked after her and cared for her. I am thoroughly convinced they are God's ordained bunch to do what they do. There were a couple that especially touched our heart. Bringing Lily home was no small feat. I had to re-learn CPR. We stayed over night in the hospital again with her to see how we handled her being on oxygen and a pulse ox monitor. It didn't go that well. I slept for maybe a total of 20 minutes all night.My husband didn't sleep much more than I did either. Nervous I guess.
I was terrified at the idea of bringing her home on oxygen but there was no other reason that she need to be in the hospital at this point. We had a long list of follow up appointments to schedule. We had a list of instructions and phone numbers. We really had everything that we needed to care for her at home. Lily had been losing weight and not gaining it back in the hospital, even being on a higher calorie formula. We were also faced with the threat of failure to thrive. My husband and I were convinced we could turn that around upon bringing her home.
It had been painful looking upon her in the hospital hooked up to all of these machines and oxygen and and IV. We felt helpless. We were frustrated and angry even. I just couldn't wrap my head around why a new little person could be so broken. When you purchase something at the store, it's new. It's in the best shape it's going to be in- ever. I can't tell you why this happened to us or why it happens to anyone. It was something that was completely out of our hands. It was something that happened the moment Lily's cells began to divide. There was nothing we could do that could have impacted the outcome. Now, there is so much that we can do to make a difference in the outcome. Not one of us knows how long we're going to be here but we can surely make the best of what time we have. I could choose to live my life angry that this ever happened in the first place. That anger would spill over into my family and the amazing privilege I have in taking care of them. Was this what I would have planned for my life? No... I don't think anyone would. Am I grateful now? Some days are easier than others. I am immensely grateful for Lily, I wouldn't trade her for a different child. She is an absolute miracle and wonder to us. There are a few things I do know. My husband and I were chosen to care for Lily. I will take that as a high honor to be able to care for such an amazing and special little girl like her. The other thing I know is that we have today... Today we are together, today she is alive and thriving. She has already over come so many obstacles. She is already a medical mystery and I pray she continues to blow doctor's away with her progress.
Jesus said that we will have struggles and trouble in this life. He wasn't kidding. I do know that if it weren't for Him and the strength we find in Him we wouldn't make it through most days. He also said not to worry about tomorrow because tomorrow already has enough worry of its own. So, we must make a conscious effort to stay in today.
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