I'm sitting here at the table, with Isaac napping about 10 feet away. He has been sick for the past 12 hours, throwing up formula every few hours, even though we have been feeding him very slowly (about an ounce an hour through his feeding tube). Last night, I thought it was just that he was having reflux from needing to have his tummy vented, but after he did it a few more times, we decided it's more likely a stomach bug. Damn.
Two days ago, my best friend's grandfather passed away. It was a peaceful death, and one that had been looming for months. Still, I was so grateful that Isaac slept comfortably that night, leaving me free to talk on the phone with my friend. Usually he wakes 2-3 times during his first few hours of sleep, getting comfortably before settling in. When I finally went to bed, I was pleasantly surprised to see that his oxygen saturation was 100%, and his heart rate in the 80s. Here in Colorado, O2 saturation of 95% is considered great, and Isaac usually hovers right around there. My first thought was 'Isaac, you are such a rockstar!' My second thought was "I hope this isn't the calm before a storm." Then I scolded myself for being pessimistic, certain that it stemmed from the news that another friend's daughter was sick with a fever (she also has SMA), and that yet another friend's little girl had just passed away at the age of 2 1/2, from complications due to SMA. You hear about friends and family whose children are ill, and I know that when an otherwise strong and healthy child gets sick, it definitely puts a wrench in your day or week (or month), but you have no reason to worry that this could be the beginning of the end. Jeremiah and I are confident that Isaac will feel better in a day or two, but we really never know. We spent yesterday afternoon outside, Jeremiah painting the garage, me clearing out our shed, Natalie playing in the sandbox, and Isaac reading books with his nurse. I received the wonderful news that a friend had delivered a healthy baby girl. Isaac's other nurse also delivered her baby last weekend, a healthy boy, four weeks early and just perfect.
Natalie was on spring break this week, and I wasn't needed at work, so we took advantage of the beautiful weather and went to the park, to the zoo, had some preschool friends over to play, and got a lot of spring cleaning done. My dad arrived in town last night, and he has taken Natalie to run errands while Isaac gets some rest. Jeremiah and I are so accustomed to running on fumes that our pieced together 2 hours of sleep last night hasn't hit us yet. So we sit, we care for Isaac, we think about Holly, who passed away, and Magnolia who is just starting a beautiful life on the outside, we think about their parents, who are in such different places.
Please pray for Isaac, that he quickly recovers from this illness, and for Jeremiah and I, that we care for him well. Please pray for Nella,who has also been sick, and for her parents who must also be exhausted. Please pray for Holly, who is home with God, and for her parents who are feeling everything so acutely. Please pray for Magnolia, and her parents, as they start their new life, and for Isaac's nurse and her new family. Please pray for the Bush family, as they lay Grandpa Bush to rest. And please pray for my friend's father, who will hear soon the results of a biopsy. Pray for another friend's son, who is only two and may have fractured his leg and be stuck in a cast for a while. And pray for my father, for his safe travels this week.
Thank you all, and God bless you this Easter season!
Saturday, April 9, 2016
Sunday, March 20, 2016
Subscribe!
I finally figured out how to let people subscribe to this blog! I think if you just enter your email above and click submit, you can get automatic updates to your email. It should work...
In Like a Lion
Hello everyone! I have been thinking about an update since Isaac's birthday. Then I wanted to wait until after his birthday party, and now, here it is, March (and more than halfway through it!). We have so many people to thank, I have so many pictures to (upload, organize, and) share. A very special thanks to Katherine Forbes for the beautiful family photos (you'll be able to tell which ones they are, they were taken on a real camera, not a phone!). Katherine came to our home for a mini-session, which turned out perfectly despite my weeks of anxiety about what we were all going to wear. A few weeks later, we received a disc of all of the photos she had taken, not the ten we had agreed on, in addition to a check for the full amount we had paid for the session. I laughed, I cried. She is incredibly generous and talented. Our kids loved her- Isaac didn't take his eyes off of her for the whole session, except when Natalie was in the picture :)
On Isaac's birthday, we woke him up by singing Happy Birthday and having him blow out his candles on his big chocolate cake. He blows out the candles with the air that gets forced out of his mask. Jeremiah held the cake and rotated it so Isaac could get to all of them. While Natalie was at preschool, we walked around town delivering birthday cupcakes to our friends at the post office, the bank, the church, and the cable company. We ate the cake as soon as Natalie came home from school. Isaac had the help of his speech therapist to enjoy some chocolate frosting, which was probably his favorite session ever. He opened his birthday presents (a new remote controlled car, a plush gruffalo mouse, balloons, books, etc). Our good friends, the Goulds, stopped by to wish him a happy birthday and play with Natalie. Grandma Sharon came by to play some games with the kids, and it was an overall excellent day!
The next day was Isaac's long appointment with the muscle clinic at Children's Hospital. Our nurse came in early, our other nurse met us there (she is taking over case management when our other nurse goes on maternity leave), and Natalie spent the day with a friend from preschool (thank you Kendra!!). From door to door, it takes about an hour to get to the hospital. We then wait in a room for all of the practitioners to come see Isaac. At the last appointment, Isaac cried the entire time (so, 3 hours or so), because he was so anxious and scared. That was several weeks after his last hospitalization, and he had not emotionally recovered. We came prepared to this appointment with extra books, toys, the ipad, and even his anti-anxiety medication (just in case!). He didn't need any of it, because he was such a trooper! I was so proud of him. We saw the dietitian, the pulmonologist, the respiratory therapist, the physical therapist, the social worker, and the nurses, each in their own turn. We usually see the neurologist and the rehab doctors as well, but we were grateful for the small mercy of just not having time. It's not that we dislike those practitioners, but 3 hours is a long haul. Isaac also needed some vaccines and lab work done, which made him very angry. But kudos to the people in the lab who somehow got all 3 vials of blood on the first poke. Another not so small mercy. We made changes to Isaac's diet, his ventilator settings, and had the physical therapist look into the status of his new medical stroller. It was a productive day, and we unloaded another dozen birthday cupcakes! The physical therapist on the team talked with us for a while about what will happen with early intervention therapies when Isaac turns three. She said "we would never have thought, back when he was diagnosed, that we would be celebrating his second birthday. But now I think we can talk about 'when he turns 3.'" It was probably the first time we have ever talked about long-term, and it was like a breath of fresh air. Yes, anything could happen on any day. Yes, we know it will happen someday. But we can also say, yes, we need to think about preschool, powerchairs, larger headgear. And why not?
The rest of the week went by as usual. I sent out some last minute birthday party invitations, ordered some shirts from Never Give Up, and took Isaac to Party City to pick out party favors. On the day of his birthday party, my mom and I went over to the church to set-up, with the help of a very nice woman from church who I had met just two days before. Susan Rizza from Rizza's Bakery brought Isaac's cake and cookies, which she so generously made with the help of her two incredible daughters. I can't even begin to tell you about how perfect and delicious the cake and cookies were. I hesitated at least twice before finally slicing into the cake, with Susan by my side, encouraging me with "That's what pictures are for!" I had only told her "Gruffalo themed," and we were delighted by the absolutely perfect results. We had some BBQ and amazing mac and cheese from The Brick House BBQ- thank you Glen and Jenni, who catered it even though they are closed on Sundays! They have been so generous and loving to us. The party itself was so much fun. We had a good turnout, although I know I didn't get to talk with half of the people there. Jeremiah and I pretty much split up in an effort to greet all of the guests. If you were there and I barely got in a cursory greeting, thank you for coming! Many of our guests asked us what the deal was with The Gruffalo. It is quite simply Isaac's favorite book. It's a fun story, with lively illustrations. We decided to perform a dramatic reading of the story for everyone, with Isaac as the mouse, Jeremiah as the Gruffalo, Natalie as fox, owl, and snake, and I narrated (and helped Isaac). We then played pin the purple prickles on the Gruffalo's back (I was rather proud of my foam Gruffalo. It's hanging on our wall next to Jeremiah's foam lion from last year's party). If you are curious about the book, go here.
In honor of Isaac's birthday, we decided to make a donation to Cure SMA. The organization provides so much information, resources, equipment, research funding, and support for families dealing with SMA. When Isaac was first diagnosed, we received a care package from Cure SMA, and it was overwhelming. Many of the items were suggested by and/or donated by other families, including toys that are easy for kids with Type 1 to play with, and items that people found helpful with their children. We decided to donate enough copies of The Gruffalo for Cure SMA to include with each care package for a year, about 175-200. I'm happy to say we raised enough money (plus the books that were donated!) to send about 190 books! The first 80 are already on their way to Chicago, to be labeled and boxed up with the care packages. Thank you to everyone who donated to the cause. Most families receive those packages within weeks of their child's diagnosis, and I remember that feeling of support, love, and connection to other parents who had gone through what we were experiencing. Your help is real, tangible, and the love will be widespread.
The rest of February and March were spent making the most out of some finally beautiful weather (read: above freezing and some melting of the ever present snow)! Jeremiah brought home a small kite on a very windy day, and Natalie and Isaac both took turns learning to fly it. My parents arrived for a visit just before Isaac's birthday party, and we had a perfect day to go to the zoo. Isaac has a new favorite zoo animal- the porcupine puffer fish! The zookeeper had just fed all of the fish, and she returned to give the puffer fish some treats. Isaac got to watch it eat, and he was transfixed for about a half hour on that tank. Jeremiah set up Isaac's swing in the backyard again, and we've gotten to enjoy it a couple of times when it hasn't been too windy. Natalie is learning to ride her strider bike, and cruising around the neighborhood on the power wheels jeep that a friend passed down to us.
Isaac's new, larger stroller arrived as well! It is enormous, but he had all but outgrown his smaller one. This is the same style as his old one, but much longer and wider. It barely fits in our van, but we have managed to make it work so far. We are hanging onto the old stroller for a while, because the new one doesn't fit into the bathroom to get Isaac into the tub. He is such a big boy, and is enjoying sitting up at about a 30 degree angle with the new lateral supports on the stroller. I'm glad he likes being more upright, because in the past few weeks he has started having reflux. The team at Children's Hospital has been surprised by how long he went without having any symptoms, because it is such a common problem for kids with SMA. A few weeks ago, Jeremiah and I were doing Isaac's nighttime treatment, and when I suctioned out some formula. Since the formula goes straight into his tummy through his g-tube, the only reason he would have formula in his throat is reflux. This can be dangerous, because he could easily aspirate and get some of that into his lungs. So we changed up our routine a bit, and now do his evening treatment before feeding him his dinner. We have also slowed down his feeds a little bit, and try to keep him at a slightly upright angle during feeds to let gravity help. Just this afternoon, however, as soon as his lunch was done, Isaac needed to be suctioned, and once again, formula came up. We had been hopeful that Isaac would continue to be that anomaly and not have reflux, but life goes on. We will see if it gets any worse, and if need be slow his feeds down even more. If it gets too bad to manage with slower feeds and an upright angle, we can always start doing continuous feeds, start a reflux medication, and or even have his g-tube pushed a little past his stomach to feed directly into his small intestine. We have options, it's just one more thing to deal with!
Isaac has been doing so well, staying healthy and happy. He finally got his second tooth, with about 5 more just waiting to make their debuts! I was so happy when that second tooth popped through- it's a milestone I have been waiting months to celebrate (which I did by writing it on the calendar, but still). He is so smart, and plays games with us on his talker, and is constantly telling us that he wants to watch TV with Natalie, to play blocks with Natalie, and for Jeremiah to hold him. We have been using a magnet board with magnetic animals to have him show us with his eyes which animal is which. The first time we played, he only missed the giraffe! His main nurse has gone on maternity leave, so we had a few weeks with nursing help only two days a week. But his other nurse will start 4 days a week this week, which will help us finally get around to some outside projects on the house, and maybe mean I can get some more hours in at work!
Today is the first day of spring and Palm Sunday, and I pray that you all have a great Holy Week leading up to Easter. It is a week meant for reflection, prayer, fasting, and reconciliation. Think about where those can fit into your life, and how you can fit your life into those things. I am so grateful for all of the prayers and support we have received, and continue to receive, from friends, family, and strangers. May God bless you all!
On Isaac's birthday, we woke him up by singing Happy Birthday and having him blow out his candles on his big chocolate cake. He blows out the candles with the air that gets forced out of his mask. Jeremiah held the cake and rotated it so Isaac could get to all of them. While Natalie was at preschool, we walked around town delivering birthday cupcakes to our friends at the post office, the bank, the church, and the cable company. We ate the cake as soon as Natalie came home from school. Isaac had the help of his speech therapist to enjoy some chocolate frosting, which was probably his favorite session ever. He opened his birthday presents (a new remote controlled car, a plush gruffalo mouse, balloons, books, etc). Our good friends, the Goulds, stopped by to wish him a happy birthday and play with Natalie. Grandma Sharon came by to play some games with the kids, and it was an overall excellent day!
 |
| The Goulds! |
 |
| Stadium Checkers with Grandma Sharon |
The next day was Isaac's long appointment with the muscle clinic at Children's Hospital. Our nurse came in early, our other nurse met us there (she is taking over case management when our other nurse goes on maternity leave), and Natalie spent the day with a friend from preschool (thank you Kendra!!). From door to door, it takes about an hour to get to the hospital. We then wait in a room for all of the practitioners to come see Isaac. At the last appointment, Isaac cried the entire time (so, 3 hours or so), because he was so anxious and scared. That was several weeks after his last hospitalization, and he had not emotionally recovered. We came prepared to this appointment with extra books, toys, the ipad, and even his anti-anxiety medication (just in case!). He didn't need any of it, because he was such a trooper! I was so proud of him. We saw the dietitian, the pulmonologist, the respiratory therapist, the physical therapist, the social worker, and the nurses, each in their own turn. We usually see the neurologist and the rehab doctors as well, but we were grateful for the small mercy of just not having time. It's not that we dislike those practitioners, but 3 hours is a long haul. Isaac also needed some vaccines and lab work done, which made him very angry. But kudos to the people in the lab who somehow got all 3 vials of blood on the first poke. Another not so small mercy. We made changes to Isaac's diet, his ventilator settings, and had the physical therapist look into the status of his new medical stroller. It was a productive day, and we unloaded another dozen birthday cupcakes! The physical therapist on the team talked with us for a while about what will happen with early intervention therapies when Isaac turns three. She said "we would never have thought, back when he was diagnosed, that we would be celebrating his second birthday. But now I think we can talk about 'when he turns 3.'" It was probably the first time we have ever talked about long-term, and it was like a breath of fresh air. Yes, anything could happen on any day. Yes, we know it will happen someday. But we can also say, yes, we need to think about preschool, powerchairs, larger headgear. And why not?
 |
| Yay! Grandma and Grandpa Boostrom! |
 |
| The first warm day in months! |
The rest of the week went by as usual. I sent out some last minute birthday party invitations, ordered some shirts from Never Give Up, and took Isaac to Party City to pick out party favors. On the day of his birthday party, my mom and I went over to the church to set-up, with the help of a very nice woman from church who I had met just two days before. Susan Rizza from Rizza's Bakery brought Isaac's cake and cookies, which she so generously made with the help of her two incredible daughters. I can't even begin to tell you about how perfect and delicious the cake and cookies were. I hesitated at least twice before finally slicing into the cake, with Susan by my side, encouraging me with "That's what pictures are for!" I had only told her "Gruffalo themed," and we were delighted by the absolutely perfect results. We had some BBQ and amazing mac and cheese from The Brick House BBQ- thank you Glen and Jenni, who catered it even though they are closed on Sundays! They have been so generous and loving to us. The party itself was so much fun. We had a good turnout, although I know I didn't get to talk with half of the people there. Jeremiah and I pretty much split up in an effort to greet all of the guests. If you were there and I barely got in a cursory greeting, thank you for coming! Many of our guests asked us what the deal was with The Gruffalo. It is quite simply Isaac's favorite book. It's a fun story, with lively illustrations. We decided to perform a dramatic reading of the story for everyone, with Isaac as the mouse, Jeremiah as the Gruffalo, Natalie as fox, owl, and snake, and I narrated (and helped Isaac). We then played pin the purple prickles on the Gruffalo's back (I was rather proud of my foam Gruffalo. It's hanging on our wall next to Jeremiah's foam lion from last year's party). If you are curious about the book, go here.
 |
| Gruffalo cake, Gruffalo shirt, no biggie |
 |
| Before The Gruffalo had any purple prickles pinned on his back |
 |
| Susan Rizza's amazing creations |
 |
| Pinning prickles! And giving the gruffalo a gruffalo mask |
 |
| #NeverGiveUp |
In honor of Isaac's birthday, we decided to make a donation to Cure SMA. The organization provides so much information, resources, equipment, research funding, and support for families dealing with SMA. When Isaac was first diagnosed, we received a care package from Cure SMA, and it was overwhelming. Many of the items were suggested by and/or donated by other families, including toys that are easy for kids with Type 1 to play with, and items that people found helpful with their children. We decided to donate enough copies of The Gruffalo for Cure SMA to include with each care package for a year, about 175-200. I'm happy to say we raised enough money (plus the books that were donated!) to send about 190 books! The first 80 are already on their way to Chicago, to be labeled and boxed up with the care packages. Thank you to everyone who donated to the cause. Most families receive those packages within weeks of their child's diagnosis, and I remember that feeling of support, love, and connection to other parents who had gone through what we were experiencing. Your help is real, tangible, and the love will be widespread.
 |
| Flying a kite! |
 |
| Watching the porcupine puffer fish |
 |
| Proof that I go outside sometimes too |
 |
| Coolest kid on the block! |
The rest of February and March were spent making the most out of some finally beautiful weather (read: above freezing and some melting of the ever present snow)! Jeremiah brought home a small kite on a very windy day, and Natalie and Isaac both took turns learning to fly it. My parents arrived for a visit just before Isaac's birthday party, and we had a perfect day to go to the zoo. Isaac has a new favorite zoo animal- the porcupine puffer fish! The zookeeper had just fed all of the fish, and she returned to give the puffer fish some treats. Isaac got to watch it eat, and he was transfixed for about a half hour on that tank. Jeremiah set up Isaac's swing in the backyard again, and we've gotten to enjoy it a couple of times when it hasn't been too windy. Natalie is learning to ride her strider bike, and cruising around the neighborhood on the power wheels jeep that a friend passed down to us.
Isaac's new, larger stroller arrived as well! It is enormous, but he had all but outgrown his smaller one. This is the same style as his old one, but much longer and wider. It barely fits in our van, but we have managed to make it work so far. We are hanging onto the old stroller for a while, because the new one doesn't fit into the bathroom to get Isaac into the tub. He is such a big boy, and is enjoying sitting up at about a 30 degree angle with the new lateral supports on the stroller. I'm glad he likes being more upright, because in the past few weeks he has started having reflux. The team at Children's Hospital has been surprised by how long he went without having any symptoms, because it is such a common problem for kids with SMA. A few weeks ago, Jeremiah and I were doing Isaac's nighttime treatment, and when I suctioned out some formula. Since the formula goes straight into his tummy through his g-tube, the only reason he would have formula in his throat is reflux. This can be dangerous, because he could easily aspirate and get some of that into his lungs. So we changed up our routine a bit, and now do his evening treatment before feeding him his dinner. We have also slowed down his feeds a little bit, and try to keep him at a slightly upright angle during feeds to let gravity help. Just this afternoon, however, as soon as his lunch was done, Isaac needed to be suctioned, and once again, formula came up. We had been hopeful that Isaac would continue to be that anomaly and not have reflux, but life goes on. We will see if it gets any worse, and if need be slow his feeds down even more. If it gets too bad to manage with slower feeds and an upright angle, we can always start doing continuous feeds, start a reflux medication, and or even have his g-tube pushed a little past his stomach to feed directly into his small intestine. We have options, it's just one more thing to deal with!
 |
| Our big boy status post haircut! |
Isaac has been doing so well, staying healthy and happy. He finally got his second tooth, with about 5 more just waiting to make their debuts! I was so happy when that second tooth popped through- it's a milestone I have been waiting months to celebrate (which I did by writing it on the calendar, but still). He is so smart, and plays games with us on his talker, and is constantly telling us that he wants to watch TV with Natalie, to play blocks with Natalie, and for Jeremiah to hold him. We have been using a magnet board with magnetic animals to have him show us with his eyes which animal is which. The first time we played, he only missed the giraffe! His main nurse has gone on maternity leave, so we had a few weeks with nursing help only two days a week. But his other nurse will start 4 days a week this week, which will help us finally get around to some outside projects on the house, and maybe mean I can get some more hours in at work!
Today is the first day of spring and Palm Sunday, and I pray that you all have a great Holy Week leading up to Easter. It is a week meant for reflection, prayer, fasting, and reconciliation. Think about where those can fit into your life, and how you can fit your life into those things. I am so grateful for all of the prayers and support we have received, and continue to receive, from friends, family, and strangers. May God bless you all!
Thursday, February 11, 2016
To My Son, On the Eve of His Second Birthday
Isaac, tomorrow is your second birthday. I am so happy I could cry, I could burst, but for now you are sleeping soundly just a few feet away, so I will remain calm and hope not to disturb you. I love you so much, and maybe someday you will understand how my love for you fills my heart and soul.
This morning, I woke up early, before anyone, to get ready for Mass. It is Ash Wednesday, the first day of Lent. I wanted to take you along, because you enjoy Mass so much, but 7:00 is a bit early for you. Natalie got up while I was in the shower, and I got out just in time to see her closing our bedroom door quietly behind her, confused that I wasn't still in bed. She blinked at me, with her hair in this messy blonde mane, and said "It's morning time?" A question, verifying that her suspicions were correct. I sent her upstairs to get Daddy. He often sleeps upstairs because if he sleeps in our room, your breathing keeps him awake. Through no fault of your own, Isaac, you do breath very loudly, and while I miss sleeping next to him every night, I understand. I hate that when he sleeps in our room again, it will be because you are gone. Instead, I imagine us having a third bedroom downstairs, but then I start to get that panicky feeling of not having you just a few feet away for as long as we have you. When Natalie came back downstairs, I heard you cooing in your crib. I hoped you were dreaming, and not awake yet. When I returned from Mass, with ashes on my forehead, you had just woken up, and Daddy was talking and playing with you in our dark, quiet room. You gave me such a funny look, disconcerted, uncomfortable with the black cross that was not part of my usual countenance. You got used to it, by the time your treatment was over.
We all loaded up, you, me, Daddy, Natalie, and Nurse Jessica, and drove back to the church for story time. You squealed with joy when it was time to sing the Hello Hello song, laughed when we played London Bridges and you and I got caught. Natalie announced that she wanted to lead everyone in singing Happy Birthday to you, which she did beautifully and sweetly. Later, she ran over to you to tell you a secret, and I heard her whisper "I love you."
We drove to Boulder for Natalie's doctor appointment. We wanted to have her cough checked out, since it has lingered. She was worried that she might have to get a shot, since she has seen you get so many shots. You fell asleep on the way there, the warm sun and the movement lulling you to sleep. You stayed outside and watched the fountain in the courtyard with Daddy and Jessica. We didn't want to bring you into the hospital, no taking chances with exposure to gross stuff. But it was also the most beautiful day, 60 degrees, sunny, with moisture in the air from the melting snow. On our way home, we stopped at the store. Daddy ran in, and you were so tired that Jessica had to distract you from your tears by showing The Gruffalo on the iPad. Home again, and you fell asleep so sweetly for your nap, while Natalie and Daddy played outside in the snow and mud. I spent the rest of the afternoon and evening baking you a cake for your birthday, making cupcakes to share with friends, and heart shaped sugar cookies (just like Grandma's), for Natalie to take to preschool for Valentine's day. I used 10 sticks of butter. I wondered which frosting you are going to like best tomorrow. Vanilla buttercream or chocolate? I think the chocolate, because it's thicker and will stay on your spoon and the tip of your tongue better. After the rest of you were asleep, I frosted the cupcakes, wrapped your birthday gifts, patted you back to sleep, prayed the last day of the Novena, and finally sat down to eat a cupcake. I was so mad at myself for not buying wrapping paper for you, but the reused gift bags and tissue paper are bright and cute, and you will be able to grab onto the paper to help open your presents. I displayed them on the table across from your crib, so when we bring you from the bedroom to the living room for your treatment, you will see Grover and Oscar and a lion looking back at you. Natalie will probably be more excited than you! I feel guilty for not celebrating her birthday every month. She knows her birthday isn't until July, but she doesn't understand why hers takes so long to come again, when yours is every month. But this time, my son, this time is a real milestone. But every day is a milestone. Every day is a gift.
I wonder, sometimes, if other parents have such vivid memories of their children's first years. Daddy and I know you so well, Natalie has always known you best. I remember when you were just a couple of weeks old, and Natalie was about 20 months old. She could tell us when you needed your diaper changed or when you were hungry by how you cried. I remember staying up at Grandma and Grandpa's house, and the neighbor girl wanted to hold you, but she was afraid you might spit up on her. I assured her that you had never spit up, and as she held her finger out for you to grasp, you barely touched her. She called you gentle. That word, gentle, overshadowed my concern that you didn't seem to have that grasping reflex. My uncle noted how much you used your belly to breath, and asked if it was normal. Daddy and I thought it was, we thought we remembered Natalie doing it. You shouldn't have been doing it, it wasn't normal. But that was almost two years ago, and we have come so far and learned so much. Words fail, Isaac, to describe how grateful I am that you are here with us tonight, that we have had so much time with you, and more to come. I love you, I love you, I love you, we love you. Keep growing, and changing, and learning, and loving us back.
And now it is midnight. Happy Birthday sweetheart!
This morning, I woke up early, before anyone, to get ready for Mass. It is Ash Wednesday, the first day of Lent. I wanted to take you along, because you enjoy Mass so much, but 7:00 is a bit early for you. Natalie got up while I was in the shower, and I got out just in time to see her closing our bedroom door quietly behind her, confused that I wasn't still in bed. She blinked at me, with her hair in this messy blonde mane, and said "It's morning time?" A question, verifying that her suspicions were correct. I sent her upstairs to get Daddy. He often sleeps upstairs because if he sleeps in our room, your breathing keeps him awake. Through no fault of your own, Isaac, you do breath very loudly, and while I miss sleeping next to him every night, I understand. I hate that when he sleeps in our room again, it will be because you are gone. Instead, I imagine us having a third bedroom downstairs, but then I start to get that panicky feeling of not having you just a few feet away for as long as we have you. When Natalie came back downstairs, I heard you cooing in your crib. I hoped you were dreaming, and not awake yet. When I returned from Mass, with ashes on my forehead, you had just woken up, and Daddy was talking and playing with you in our dark, quiet room. You gave me such a funny look, disconcerted, uncomfortable with the black cross that was not part of my usual countenance. You got used to it, by the time your treatment was over.
We all loaded up, you, me, Daddy, Natalie, and Nurse Jessica, and drove back to the church for story time. You squealed with joy when it was time to sing the Hello Hello song, laughed when we played London Bridges and you and I got caught. Natalie announced that she wanted to lead everyone in singing Happy Birthday to you, which she did beautifully and sweetly. Later, she ran over to you to tell you a secret, and I heard her whisper "I love you."
We drove to Boulder for Natalie's doctor appointment. We wanted to have her cough checked out, since it has lingered. She was worried that she might have to get a shot, since she has seen you get so many shots. You fell asleep on the way there, the warm sun and the movement lulling you to sleep. You stayed outside and watched the fountain in the courtyard with Daddy and Jessica. We didn't want to bring you into the hospital, no taking chances with exposure to gross stuff. But it was also the most beautiful day, 60 degrees, sunny, with moisture in the air from the melting snow. On our way home, we stopped at the store. Daddy ran in, and you were so tired that Jessica had to distract you from your tears by showing The Gruffalo on the iPad. Home again, and you fell asleep so sweetly for your nap, while Natalie and Daddy played outside in the snow and mud. I spent the rest of the afternoon and evening baking you a cake for your birthday, making cupcakes to share with friends, and heart shaped sugar cookies (just like Grandma's), for Natalie to take to preschool for Valentine's day. I used 10 sticks of butter. I wondered which frosting you are going to like best tomorrow. Vanilla buttercream or chocolate? I think the chocolate, because it's thicker and will stay on your spoon and the tip of your tongue better. After the rest of you were asleep, I frosted the cupcakes, wrapped your birthday gifts, patted you back to sleep, prayed the last day of the Novena, and finally sat down to eat a cupcake. I was so mad at myself for not buying wrapping paper for you, but the reused gift bags and tissue paper are bright and cute, and you will be able to grab onto the paper to help open your presents. I displayed them on the table across from your crib, so when we bring you from the bedroom to the living room for your treatment, you will see Grover and Oscar and a lion looking back at you. Natalie will probably be more excited than you! I feel guilty for not celebrating her birthday every month. She knows her birthday isn't until July, but she doesn't understand why hers takes so long to come again, when yours is every month. But this time, my son, this time is a real milestone. But every day is a milestone. Every day is a gift.
I wonder, sometimes, if other parents have such vivid memories of their children's first years. Daddy and I know you so well, Natalie has always known you best. I remember when you were just a couple of weeks old, and Natalie was about 20 months old. She could tell us when you needed your diaper changed or when you were hungry by how you cried. I remember staying up at Grandma and Grandpa's house, and the neighbor girl wanted to hold you, but she was afraid you might spit up on her. I assured her that you had never spit up, and as she held her finger out for you to grasp, you barely touched her. She called you gentle. That word, gentle, overshadowed my concern that you didn't seem to have that grasping reflex. My uncle noted how much you used your belly to breath, and asked if it was normal. Daddy and I thought it was, we thought we remembered Natalie doing it. You shouldn't have been doing it, it wasn't normal. But that was almost two years ago, and we have come so far and learned so much. Words fail, Isaac, to describe how grateful I am that you are here with us tonight, that we have had so much time with you, and more to come. I love you, I love you, I love you, we love you. Keep growing, and changing, and learning, and loving us back.
And now it is midnight. Happy Birthday sweetheart!
Saturday, February 6, 2016
A Mid-Novena Reminder!
Happy Super Bowl Weekend from the Cranes!
This past fall and winter, I have unwittingly become a football fan. I had never enjoyed watching a football game of any sort, and certainly did not have a favorite team. It turns out that after 10.5 years in Colorado, where the entire state seems to bleed orange and blue, and having a son, a husband, and parents who do enjoy the game, I can say that I want the Broncos to play well tomorrow, and to win. I know the names of quarterbacks, have a general knowledge of how the game is actually played, and have come to appreciate the athletic skills of many of the players. Had you asked me even one year ago what I thought about professional football, I would have made some comment about concussions. Now I make a comment about concussions followed up with something like "Did you see the game against the Patriots?" I'm not dressing myself and my children in Broncos gear, but we are looking forward to watching them play in the Super Bowl. Come to think of it, Isaac has an orange shirt he could wear... My point is this: you may have an idea of how your life is going to be, but there is always change. Two years ago, we were awaiting the birth of our son, still not sure if his name would be Isaac or Gregory, and definitely not expecting the life changing diagnosis that he would receive. One year ago, we were preparing for what we thought would be Isaac's only birthday. Today we are happily planning his second birthday, his party, and we had professional photos taken in honor of the event. I have a friend through the SMA Type 1 Support group whose son is celebrating his first birthday today. She also thought this day would never come, and his first year of life was probably not what she expected it to be. There will always be plans, there will always be changes to those plans, there will always be God's plan. And because of this we always have hope.
 |
Bedtime! Snuggles and his favorite music box. And yes, that's a picture of Super Girl on his wall :)
|
Today is the fifth day of the Novena to Our Lady of Lourdes. Please continue to pray for Isaac as we near his second birthday! My prayer is that he wakes up on his birthday, also the Feast of Our Lady of Lourdes, completely cured of SMA. It seems far-fetched, it seems impossible. But it isn't! You can find the entire novena here. Enjoy the rest of your weekend, and if you are here in Colorado, enjoy the blue skies and break from the freezing weather! Thank you for your prayers and support!
| DAY FIVE O Mary Immaculate, Mother of God and our mother, from the heights of your dignity look down mercifully upon us while we, full of confidence in your unbounded goodness and confident that your Divine Son will look favorably upon any request you make of Him in our behalf, we beseech you to come to our aid and secure for us the favor we seek in this novena.
(make your request)
O Brilliant star of purity, Mary Immaculate, Our Lady of Lourdes, glorious in your assumption, triumphant in your coronation, show unto us the mercy of the Mother of God, Virgin Mary, Queen and Mother, be our comfort, hope, strength, and consolation. Amen.Our Lady of Lourdes, pray for us. Saint Bernadette, pray for us. Our Father, Hail Mary, Glory Be
| |||
Monday, February 1, 2016
A Time for Prayer
Throughout January, I felt that many of our days were rushed. What parent isn't overwhelmed with school, activities, cleaning, laundry, and the like? In January, I worked quite a bit more than I had been, and with all of our routines and scheduled activities, the month was just here and gone. Most mornings, Natalie wakes up early and then gets Jeremiah up to watch a cartoon and have breakfast. I get up shortly thereafter and check if Isaac is still sleeping. He usually sleeps until about the time his nurse arrives, but this morning he was laying awake in his crib, and whined when I tried to sneak past him out of the room to grab a cup of coffee before getting him up. After the nurse arrives, we spend the next 45-60 minutes on Isaac's treatment and getting him ready for the day. Some mornings, Natalie has preschool or gymnastics. Once a week we try to get to the Song and Story time, and on Sundays we go to Mass. Isaac has therapy 3-4 times a week, and he naps for 1-2 hours every afternoon. When I work, I try to be back home before he wakes up from his nap, because he tends to wake up kind of grumpy. We have dinner by 5, so Isaac can join us at the table before we start the bedtime routine around 6:00. We have the kids in bed a little after 8, and then we have an hour or two to finish some chores, make Isaac's formula for the night, and relax before heading to bed. Some nights, Isaac needs to be repositioned every hour or two and gently patted before he falls back to sleep. Other nights, he doesn't make a peep for hours, except maybe to coo or giggle at a dream. I really don't mind waking up to those sweet sounds...
One night, as I was standing by Isaac's crib, patting him and stroking his hair until he fell back to sleep, I was hit with an overwhelming sense of love and gratitude and awe. I thought about how incredible it is that a person, my son, would be here on this earth, and his sole purpose was love- to be loved and then to love. Then I thought, 'well, who isn't here to be loved?' People accomplish great things, or they accomplish small things. People are a joy to be around, or maybe they try your patience. What a person can or can not do, what he says, what she does- like it or not, people are here to be loved. Isaac just makes it easy to both love him and adore him; caring for him is a joy. But love doesn't necessarily mean joy and feelings of adoration. It usually means a choice, making the choice to give a person what he needs, to care for someone spiritually and physically, and to do it even when it hurts or goes against your natural tendency to avoid that person. The unborn, the elderly, the dying, the homeless, the foreigner, the disabled, the criminal, the politician, the weird kid in class, the annoying co-worker. We all have someone that needs our love, our choice, our joy. Isaac is special because, to strangers, he is different, sick, disabled; but he inspires great acts of sacrifice and charity and generosity and compassion. He inspires Love. I am grateful beyond words that God gave him to Jeremiah and me to know and love as our son. I am also grateful that, with his life, he gives others opportunities to grow in faith and hope and charity. Thank you for responding to those opportunities. I hope that everyone who reads this update will think of yet another person who needs your love (perhaps someone who isn't as easy to love as a bright-eyed two year old boy), and make the choice to love.
I would like to ask another favor of everyone reading this who is willing to pray. Tomorrow, February 2, begins the Novena to Our Lady of Lourdes. Isaac's birthday is also the Feast of Our Lady of Lourdes, and I ask that everyone pray the novena with the intention that Isaac continues to grow, remains healthy, and for his miraculous cure. I rarely think about a cure anymore, because I think Isaac is perfect just as he is, but I still have dreams of waking up some morning to see that he has rolled over, taken his mask off his face, and fallen back asleep in whatever position he wanted, breathing on his own. Our Lady of Lourdes is one of the many names we Catholics give to Mary. This one is due to apparitions that began on February 11, 1858, in Lourdes, France. The site of the apparitions has become a pilgrimage site, especially for people seeking physical and spiritual healing. Miracles have occurred there! I have holy water from the spring at Lourdes, and I bless Isaac with it every night. A novena is prayed for the nine days leading up to the feast day. So I invite you to begin tomorrow, and set aside a few minutes of prayer for Isaac and our family! Below is a link to the novena, and below that I will copy the first day's prayer. If you are not Catholic or just don't feel comfortable praying to Mary, remember that we are asking for Mary's intercession with her son, the same way that she interceded on behalf of the bride and groom at the wedding feast in Cana. Her intercession is powerful, and it produces results even greater than wine. Even greater than really good wine!
Novena of Our Lady of Lourdes
Day 1, February 2
Our Father, who art in heaven, hallowed be thy name.
Thy kingdom come, Thy will be done on earth as it is in heaven.
Give us this day our daily bread,
and forgive us our trespasses as we forgive those who trespass against us.
Lead us not into temptation, but deliver us from evil. Amen.
Hail Mary, full of grace,
the Lord is with thee.
Blessed art thou among women,
and blessed is the fruit of they womb, Jesus.
Holy Mary, mother of God,
pray for us sinners, now and at the hour of our death. Amen,
Glory be to the Father, and to the Son, and to the Holy Spirit,
as it was in the beginning, is now, and ever shall be,
world without end. Amen.
One night, as I was standing by Isaac's crib, patting him and stroking his hair until he fell back to sleep, I was hit with an overwhelming sense of love and gratitude and awe. I thought about how incredible it is that a person, my son, would be here on this earth, and his sole purpose was love- to be loved and then to love. Then I thought, 'well, who isn't here to be loved?' People accomplish great things, or they accomplish small things. People are a joy to be around, or maybe they try your patience. What a person can or can not do, what he says, what she does- like it or not, people are here to be loved. Isaac just makes it easy to both love him and adore him; caring for him is a joy. But love doesn't necessarily mean joy and feelings of adoration. It usually means a choice, making the choice to give a person what he needs, to care for someone spiritually and physically, and to do it even when it hurts or goes against your natural tendency to avoid that person. The unborn, the elderly, the dying, the homeless, the foreigner, the disabled, the criminal, the politician, the weird kid in class, the annoying co-worker. We all have someone that needs our love, our choice, our joy. Isaac is special because, to strangers, he is different, sick, disabled; but he inspires great acts of sacrifice and charity and generosity and compassion. He inspires Love. I am grateful beyond words that God gave him to Jeremiah and me to know and love as our son. I am also grateful that, with his life, he gives others opportunities to grow in faith and hope and charity. Thank you for responding to those opportunities. I hope that everyone who reads this update will think of yet another person who needs your love (perhaps someone who isn't as easy to love as a bright-eyed two year old boy), and make the choice to love.
I would like to ask another favor of everyone reading this who is willing to pray. Tomorrow, February 2, begins the Novena to Our Lady of Lourdes. Isaac's birthday is also the Feast of Our Lady of Lourdes, and I ask that everyone pray the novena with the intention that Isaac continues to grow, remains healthy, and for his miraculous cure. I rarely think about a cure anymore, because I think Isaac is perfect just as he is, but I still have dreams of waking up some morning to see that he has rolled over, taken his mask off his face, and fallen back asleep in whatever position he wanted, breathing on his own. Our Lady of Lourdes is one of the many names we Catholics give to Mary. This one is due to apparitions that began on February 11, 1858, in Lourdes, France. The site of the apparitions has become a pilgrimage site, especially for people seeking physical and spiritual healing. Miracles have occurred there! I have holy water from the spring at Lourdes, and I bless Isaac with it every night. A novena is prayed for the nine days leading up to the feast day. So I invite you to begin tomorrow, and set aside a few minutes of prayer for Isaac and our family! Below is a link to the novena, and below that I will copy the first day's prayer. If you are not Catholic or just don't feel comfortable praying to Mary, remember that we are asking for Mary's intercession with her son, the same way that she interceded on behalf of the bride and groom at the wedding feast in Cana. Her intercession is powerful, and it produces results even greater than wine. Even greater than really good wine!
Novena of Our Lady of Lourdes
Day 1, February 2
| Be blessed, O most pure Virgin, for having vouchsafed to manifest your shining with life, sweetness and beauty, in the Grotto of Lourdes, saying to the child, St. Bernadette: "I am the Immaculate Conception." A thousand times we congratulate you upon your Immaculate Conception. And now, O ever Immaculate Virgin, Mother of mercy, Health of the sick, Refuge of sinners, Comforter of the afflicted, you know our wants, our troubles, our sufferings deign to cast upon us a look of mercy. |  |
| By appearing in the Grotto of Lourdes, you were pleased to make it a privileged sanctuary, whence you dispense your favors, and already many have obtained the cure of their infirmities, both spiritual and physical. We come, therefore, with the most unbounded confidence to implore your maternal intercession. Obtain for us, O loving Mother, the granting of our request. (state your request) Through gratitude for your favors, we will endeavor to imitate your virtues, that we may one day share your glory. Our Lady of Lourdes, Mother of Christ, you had influence with your divine son while upon earth. You have the same influence now in Heaven. Pray for us; obtain for us from your Divine Son our special requests if it be the Divine Will. Amen.Our Lady of Lourdes, pray for us.Saint Bernadette, pray for us. DAY ONE O Mary Immaculate, Our Lady of Lourdes, virgin and mother, queen of heaven, chosen from all eternity to be the Mother of the Eternal Word and in virtue of this title preserved from original sin, we kneel before you as did little Bernadette at Lourdes and pray with childlike trust in you that as we contemplate your glorious appearance at Lourdes, you will look with mercy on our present petition and secure for us a favorable answer to the request for which we are making this novena.
(make your request)
O Brilliant star of purity, Mary Immaculate, Our Lady of Lourdes, glorious in your assumption, triumphant in your coronation, show unto us the mercy of the Mother of God, Virgin Mary, Queen and Mother, be our comfort, hope, strength, and consolation. Amen.Our Lady of Lourdes, pray for us. Saint Bernadette, pray for us. End each day by praying the Our Father, Hail Mary, and Glory Be. | |
Thy kingdom come, Thy will be done on earth as it is in heaven.
Give us this day our daily bread,
and forgive us our trespasses as we forgive those who trespass against us.
Lead us not into temptation, but deliver us from evil. Amen.
Hail Mary, full of grace,
the Lord is with thee.
Blessed art thou among women,
and blessed is the fruit of they womb, Jesus.
Holy Mary, mother of God,
pray for us sinners, now and at the hour of our death. Amen,
Glory be to the Father, and to the Son, and to the Holy Spirit,
as it was in the beginning, is now, and ever shall be,
world without end. Amen.
Sunday, January 31, 2016
It's February! You know what that means?
Isaac's second birthday is almost here! That's right, in just 11 days our sweet, bright, funny, handsome little dude will be two years old! When Isaac was first diagnosed, we only dreamed this day would come. We gratefully celebrated his first birthday, then cautiously settled back into daily life. We had some scares over the summer, but by Thanksgiving we felt confident that we could hope for a celebration of Isaac's second birthday. Hope is such a strange feeling for us and for those who know and love Isaac. We have every reason to hope and believe that he will live to see his birthday. We don't have pits in our stomachs constantly aching with that sharp, consuming fear. But every single day we live with the reality that Isaac is strong but fragile. Isaac is a fighter, but if we didn't react in time with just what he needed to keep on breathing...It is a reality, but one we try to push aside and ignore in favor of the amazing and beautiful moments of every day. I think of Emily Dickinson, "Hope is the thing with feathers that perches in the soul-and sings the tune without the words- and never stops at all." Hope never stops, yet I feel it both perching and preparing for flight.
The past month has flown by, as I'm sure is true for everyone. I had intended to write a post just after Christmas, but then suddenly it was January, and now February. We managed to stay busy despite being snowed in for all but two days in January. By snowed in, I mean that the snow we got before Christmas is still on the ground, now taking the forms of snow, ice, and mud covering half of the surfaces in our neighborhood. Those conditions are ideal for Natalie, who will happily tromp through all of it (and has two mud-caked pairs of boots to prove it), but not so great for Isaac, whose stroller is designed for dry sidewalk...
The day of the snowstorm, I stopped by Wal-Mart on my way to work. I had to pick up a sled! I was not the only person with the same idea, but I managed to grab one of the last three. Jeremiah and Isaac did some laps around the front yard. He was skeptical, but hey, it was a new experience! Later, in January, Natalie and I went sledding on the hill here in Mead. We broke the sled, but it had a good run. Or seven, to be exact.
We have managed to get to almost every Song and Story time over at the parish hall. Isaac loves it. I have a picture of him below (with one of his nurses behind and a friend in front), shaking the eggs during a song.
We had a lovely Christmas, and it already seems so long ago! The four of us went to Christmas Eve Mass at our local parish. We always try to sit in the front pew at Mass, because Isaac can sit in front of us and watch the proceedings (and squeal with delight at the sight of Father Alan, the Eucharist, the lector, the altar servers, etc.). We arrived 45 minutes early, but we still weren't there soon enough to nab the front pew. Thankfully, the family in front graciously gave us their spot, so Isaac was able to see the goings on and watch all of the kids who sat around the altar for the service. Jeremiah helped him place an angel ornament on the tree (a tradition at our church). We sang Silent Night, and I choked up and cried. I have always had a hard time singing that song on Christmas without getting teary eyed, but this year I full on cried. I was just so happy to be standing there at my husband's side, looking up at the altar with the manger scene, surrounded by children- including both of our children. One or two older boys gave me concerned glances, and tried to look tactfully away. So. Sweet.
In the morning, Natalie woke up and opened her stocking. Isaac slept in a full hour and a half later than usual, and Natalie played patiently while she waited for him to get up. Once he was up and ready, we opened presents. My uncle Neal and Jeremiah's mother, Sharon, joined us, and I loved having some extended family for the day! We had lunch, talked, and tried to convince Isaac to take a nap (he did not). It is difficult to describe the joy of celebrating another Christmas with both Natalie and Isaac. My heart was full, as it is every day, but with the added graces and blessings of our Savior's birth.
I have so much more to say, but I will leave it for another (coming soon!) post. I hope that you all ring in this next month with prayer, kindness, and acts of true love. Be patient with one another, be gentle, and be not afraid to speak what's in your heart. There will always be hope, whether you feel it perching or taking wing, because there is always Jesus Christ, our God who knows you and loves you still.
From today's Mass readings:
"Before I formed you in the womb, I knew you. Before you were born, I dedicated you..." Jeremiah 1:4-5
"I will sing of your salvation.
For you are my hope, O Lord,
my trust, O God, from my youth.
On you I depend from my birth;
from my mother's womb you are my strength." Psalm 71
"Brothers and sisters:
Strive eagerly for the greatest spiritual gifts.
But I shall show you a still more excellent way.
If I speak in human and angelic tongues,
but do not have love,
I am a resounding gong or a clashing cymbal.
And if I have the gift of prophecy,
and comprehend all mysteries and all knowledge;
if I have all faith so as to move mountains,
but do not have love, I am nothing.
If I give away everything I own,
and if I hand my body over so that I may boast,
but do not have love, I gain nothing.
Love is patient, love is kind.
It is not jealous, it is not pompous,
It is not inflated, it is not rude,
it does not seek its own interests,
it is not quick-tempered, it does not brood over injury,
it does not rejoice over wrongdoing
but rejoices with the truth.
It bears all things, believes all things,
hopes all things, endures all things.
Love never fails.
If there are prophecies, they will be brought to nothing;
if tongues, they will cease;
if knowledge, it will be brought to nothing.
For we know partially and we prophesy partially,
but when the perfect comes, the partial will pass away.
When I was a child, I used to talk as a child,
think as a child, reason as a child;
when I became a man, I put aside childish things.
At present we see indistinctly, as in a mirror,
but then face to face.
At present I know partially;
then I shall know fully, as I am fully known.
So faith, hope, love remain, these three;
but the greatest of these is love." 1Corinthians 12:31-13:13
 |
| Handsome dude! |
Our son is an incredibly smart kid. I wish everyone could see him use his talker, control his switch toys, and manipulate his mommy and daddy for more cartoons. Isaac has learned exactly how he needs to communicate with us if he needs something. Jeremiah and I know his different sounds, how he tells us he needs to be suctioned, that he's had enough, that he wants a turn playing, that he needs to be moved or have his diaper changed, or a dry cloth under his head, which book he wants to read, and when we have misinterpreted what he said. He likes to be silly, in his own way. Last night, Jeremiah and Natalie were off at a Daddy and Daughter Dance. Isaac and I were playing a game where he holds onto a small ball and drops it on the count of three. When I would ask him if he wanted another turn, he would say his version of "yeah." He would open his fingers for me, and as soon as the ball got close to his hand, he would clench his fist to keep me from giving the ball to him. I would laugh, he would giggle, and eventually he would open his fingers to take another turn.
Isaac playing ball, but not teasing me!
The past month has flown by, as I'm sure is true for everyone. I had intended to write a post just after Christmas, but then suddenly it was January, and now February. We managed to stay busy despite being snowed in for all but two days in January. By snowed in, I mean that the snow we got before Christmas is still on the ground, now taking the forms of snow, ice, and mud covering half of the surfaces in our neighborhood. Those conditions are ideal for Natalie, who will happily tromp through all of it (and has two mud-caked pairs of boots to prove it), but not so great for Isaac, whose stroller is designed for dry sidewalk...
 |
| We saw The Nutcracker in Longmont, and Sharon gave the kids a beautiful ornament! |
 |
| Jeremiah gave Isaac a pre-Christmas haircut :) |
The day of the snowstorm, I stopped by Wal-Mart on my way to work. I had to pick up a sled! I was not the only person with the same idea, but I managed to grab one of the last three. Jeremiah and Isaac did some laps around the front yard. He was skeptical, but hey, it was a new experience! Later, in January, Natalie and I went sledding on the hill here in Mead. We broke the sled, but it had a good run. Or seven, to be exact.
We have managed to get to almost every Song and Story time over at the parish hall. Isaac loves it. I have a picture of him below (with one of his nurses behind and a friend in front), shaking the eggs during a song.
We had a lovely Christmas, and it already seems so long ago! The four of us went to Christmas Eve Mass at our local parish. We always try to sit in the front pew at Mass, because Isaac can sit in front of us and watch the proceedings (and squeal with delight at the sight of Father Alan, the Eucharist, the lector, the altar servers, etc.). We arrived 45 minutes early, but we still weren't there soon enough to nab the front pew. Thankfully, the family in front graciously gave us their spot, so Isaac was able to see the goings on and watch all of the kids who sat around the altar for the service. Jeremiah helped him place an angel ornament on the tree (a tradition at our church). We sang Silent Night, and I choked up and cried. I have always had a hard time singing that song on Christmas without getting teary eyed, but this year I full on cried. I was just so happy to be standing there at my husband's side, looking up at the altar with the manger scene, surrounded by children- including both of our children. One or two older boys gave me concerned glances, and tried to look tactfully away. So. Sweet.
After Mass, we came home and had dinner together. Natalie left cookies out for Santa (along with an impressively recognizable drawing of a Christmas tree), and the kids went to bed.
In the morning, Natalie woke up and opened her stocking. Isaac slept in a full hour and a half later than usual, and Natalie played patiently while she waited for him to get up. Once he was up and ready, we opened presents. My uncle Neal and Jeremiah's mother, Sharon, joined us, and I loved having some extended family for the day! We had lunch, talked, and tried to convince Isaac to take a nap (he did not). It is difficult to describe the joy of celebrating another Christmas with both Natalie and Isaac. My heart was full, as it is every day, but with the added graces and blessings of our Savior's birth.
 |
| In awe upon first seeing his new dragon puppet in the stocking |
 |
| Yes, I keep dressing my kids in matching clothes, reindeer pajamas included. |
 |
| Playing with Isaac's new trains before bed on Christmas day. |
From today's Mass readings:
"Before I formed you in the womb, I knew you. Before you were born, I dedicated you..." Jeremiah 1:4-5
"I will sing of your salvation.
For you are my hope, O Lord,
my trust, O God, from my youth.
On you I depend from my birth;
from my mother's womb you are my strength." Psalm 71
"Brothers and sisters:
Strive eagerly for the greatest spiritual gifts.
But I shall show you a still more excellent way.
If I speak in human and angelic tongues,
but do not have love,
I am a resounding gong or a clashing cymbal.
And if I have the gift of prophecy,
and comprehend all mysteries and all knowledge;
if I have all faith so as to move mountains,
but do not have love, I am nothing.
If I give away everything I own,
and if I hand my body over so that I may boast,
but do not have love, I gain nothing.
Love is patient, love is kind.
It is not jealous, it is not pompous,
It is not inflated, it is not rude,
it does not seek its own interests,
it is not quick-tempered, it does not brood over injury,
it does not rejoice over wrongdoing
but rejoices with the truth.
It bears all things, believes all things,
hopes all things, endures all things.
Love never fails.
If there are prophecies, they will be brought to nothing;
if tongues, they will cease;
if knowledge, it will be brought to nothing.
For we know partially and we prophesy partially,
but when the perfect comes, the partial will pass away.
When I was a child, I used to talk as a child,
think as a child, reason as a child;
when I became a man, I put aside childish things.
At present we see indistinctly, as in a mirror,
but then face to face.
At present I know partially;
then I shall know fully, as I am fully known.
So faith, hope, love remain, these three;
but the greatest of these is love." 1Corinthians 12:31-13:13
Subscribe to:
Posts (Atom)