Monday was Labor Day so Allen got to stay home with us. We went on a run and stopped at the new, nearby gas station for Icees after playing at the park.
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| Caleb's first Icee/Slurpee. |
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| Such a calm, easy-going happy baby despite everything! |
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| We're trying to get strong enough to sit up! |
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| Highlight of our Walmart trip: looking at the fish! |
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| Caleb's favorite part of watching Thomas, is when it shows real people instead of the animation. |
Moments to not forget that I wrote late at night on my iPod touch:
Caleb staying awake, reading books by nightlight
Watching her big brother with a look that encompasses emotions ranging from awe and admiration to love to "ow! that hurt" and back to love again
Doing shadow puppets on Caleb's bedroom wall
Nursing Leila at night
Jumping in puddles
Stop signs and looking for cars on our walks
Leila pulling her tube out, broken pump
Shower baths with bubbles
Wrestling with dad
Squeals and giggles from ticklish kids (and Mom)
Green light means go and our backseat driver asking to go faster
Caleb asking to sing faster and slower when singing the popcorn song
Playing the piano on the bench
Learning how to hug
Playing with trains endlessly
Kissing noises
Recovery from hospital: back to happy, smiley, active baby
Saying please
Following neighborhood kids around, helping them sell cookie dough
Toothless smiles
Not able to go to bed without sharing pretend cake from Go Dog Go with Dad
Recognizing when we're near sonic and asking for fries. (Their fries aren't great but we always get coupons for a free route 44 drink with any food purchase and he loves fries! So we went there about once a week in the summer.)
Patience from both kids about the number and frequency of doctor's office visits.
Breaking away from nursing to smile and talk to me before diving back in for more.
Walks to the mailbox in the cool evenings (only 88 with a breeze most nights this week!) after the kids are in bed.
Playing in Mom and Dad's bed
Both kids in the swings
Long walks to and from the park... Running, jumping, spinning, smelling flowers, throwing sticks in the water, watching birds and squirrels, waving at every car and truck that passes and twisting hands with excitement at the school busses we missed watching all summer.
Relief to find out Leila doesn't have spinal muscular atrophy
Wearing church shoes everywhere, wearing one black church shoe and one red Nike everywhere
Watching the fish at Walmart
Here's an excerpt from my journal on September 4th:
"Life is a rollercoaster: a couple of weeks ago I had a recentering, where I set daily goals for myself (study scriptures 10-15 minutes, play piano 5 minutes, replace time on facebook with reading/writing, at least the 7 minute workout when I don't do any other exercise, run once a week and lift once a week, 3+ servings of fruits and veggies, 8+ glasses of water, visit teach). I was feeling great and was consistently meeting my goals every day! And then on Friday Aug 23 Leila was admitted to the hospital and I was there with her until Thursday Aug 29. Nothing has been the same since then but today Leila has started acting back to normal. I am working to overcome frustration with doctors about the whole ordeal and am skeptical about tube-feeding."
In hindsight, those couple weeks of reaching albeit simple goals, helped prepare me for the upcoming week of hospitalization and the waiting period of up to 6 weeks to wait for Leila's genetic results to come back.
Sept 5th:
"Great news today from the geneticists' office: Leila does not have spinal muscular atrophy! Over the past couple of days I've had a definite peace about Leila... that everything would be okay. When I heard the news, I was relieved and grateful but not surprised."
This is a letter that I wrote to my friends whose baby died from SMA. They had asked people who had been touched by the story of their son Mathis to send letters. I want to include it here because it summarizes thoughts and feelings I had at the time, not written almost a year and a half later, like this blog post!
My daughter Leila was born March 16, 2013. She was born full-term and everything seemed normal until her second night in the hospital when she began choking on mucus. To keep our long story short, she was admitted to the NICU and kept there for a week and we left with no answers.
Shortly after she came home I began following your blog as I was up at night feeding her. I was in the Athletic Training program at BYU with Dujuan and was saddened to hear about Mathis' diagnosis. As the days and weeks passed with many night awakenings and little sleep, your blog helped me grateful for each moment I was able to hold her, even multiple times a night.
Leila continued to have frequent choking episodes that lasted anywhere from a few minutes to an hour, when I would have to suction her over and over to get her to breathe. This was unlike anything I had to do with my son and I wondered what was wrong and why it was happening.
During this same time, I read about Dujuan having to suction Mathis and prayed for your family, feeling like I had only a small glimpse into everything you were dealing with. I marveled at the strength you showed and the weaknesses/trials you shared as well. I prayed and hoped that Leila did not have SMA, but knew something was not right. I thought, I am not as strong and Dujuan and his family, I cannot go through all of the things they are going through.
Leila was admitted into the hospital again when she was 3 months old and the doctors did lots of tests. We left a few days later without any answers and the doctors still puzzled. Fast forward to 5 1/2 months old (the end of August)... admitted to the hospital again and put on a feeding tube. This time the geneticists (among other specialists) were called in. They asked if anyone had told us she had low muscle tone and proceeded to tell us they were going to run genetic tests for SMA, Prader-Willi and a general microarray deletion test.
When the geneticists left the hospital room, I cried. I drew strength from your family. Leila and I spent a week in the hospital this time... we left without answers again, but knowing we'd have to wait a couple of months to hear back about the genetic tests. I wasn't sure how I would handle things in the upcoming weeks, waiting and wondering. I knew that if the test came back positive for SMA, I wanted to follow your example and do a hope list. I woke up at night crying, after dreaming that I would have to tell my (almost) two year-old that his sister was in heaven and he wouldn't see her for a long, long time. At this point Mathis had already passed away but you hadn't written your blog about it yet and I cried for your family and what you must be going through trying to explain to your boys about their baby brother.
On Fast Sunday in September, just a few days after being released from the hospital, my family and close friends fasted for Leila. I did not expect much to come from the fast, because she either had a genetic disorder or she didn't... the fast wouldn't change anything. But it changed me, and I didn't even fast (breastfeeding). From that day forward, I was comforted.
I had bad days and good days. Frustrations with her feeding tube, frustrations with lots of doctors' appointments, frustrations with not being able to fix anything and feeling inadequate as a mother. There were times I would break down and cry at the park because Caleb wanted Leila to sit in the swing but she couldn't hold herself up enough to sit in it, even at 6 months old, and I wondered if she would ever be able to do what other kids can do. There were moments of jealousy as I watched my friends' babies that were about the same age begin to do things that she was nowhere close to doing. But there was a sense of peace that came, when I allowed it. The Spirit helped me know that everything would be alright, even if it meant that Leila might return Home sooner than we wanted her to leave her earthly home. I knew in my heart (and not just my head) that whatever happened was in the Lord's hands.
I read and re-read about Mathis and your adventures. I thought of all the things you did as a family, regardless of the difficulties and setbacks. I cried and laughed and smiled as I read and looked at your pictures. I could feel your family's love for Mathis. I continued to draw strength from your family.
With help from occupational/physical therapy, Leila began to improve. I was pretty sure that if she had SMA, it was not type one, like Mathis. Toward the end of September I got a phone call from the geneticist. Leila did not have SMA. I felt relief. I felt guilty that your family had to endure all that SMA entailed and I didn't have to.
On October 3 we found out Leila has a genetic disorder called 22q11.2 deletion syndrome/DiGeorge/VCFS. When compared with SMA, it was a relief to hear this diagnosis. While she will most likely be delayed developmentally (cognitive, motor skills, communication, etc) and will continue to have medical problems that require frequent meeting with specialists, she will be our little angel forever, just like Mathis is yours forever.
Mathis, your family and your story continue to inspire me. He truly is a miracle that touched lives in just a few short months because you were willing to help him make the most of his time on this earth and willing to share those personal and precious experiences. Because of your examples, I have strength to do all that I need to... even when I feel like I can't spend one more hour in a doctor's office or hospital. Because of Mathis, I am more patient with my children and I hug them a little tighter. Because I have been blessed by reading your story, I have been sharing his story with many others too. I know your struggles as a family are far from over as you miss him every day. My prayers continue to be with you. Thank you for sharing Mathis with us.
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| I love her sleepy, cuddly moments after she finishes nursing. |
"Life is a rollercoaster: a couple of weeks ago I had a recentering, where I set daily goals for myself (study scriptures 10-15 minutes, play piano 5 minutes, replace time on facebook with reading/writing, at least the 7 minute workout when I don't do any other exercise, run once a week and lift once a week, 3+ servings of fruits and veggies, 8+ glasses of water, visit teach). I was feeling great and was consistently meeting my goals every day! And then on Friday Aug 23 Leila was admitted to the hospital and I was there with her until Thursday Aug 29. Nothing has been the same since then but today Leila has started acting back to normal. I am working to overcome frustration with doctors about the whole ordeal and am skeptical about tube-feeding."
In hindsight, those couple weeks of reaching albeit simple goals, helped prepare me for the upcoming week of hospitalization and the waiting period of up to 6 weeks to wait for Leila's genetic results to come back.
Sept 5th:
"Great news today from the geneticists' office: Leila does not have spinal muscular atrophy! Over the past couple of days I've had a definite peace about Leila... that everything would be okay. When I heard the news, I was relieved and grateful but not surprised."
This is a letter that I wrote to my friends whose baby died from SMA. They had asked people who had been touched by the story of their son Mathis to send letters. I want to include it here because it summarizes thoughts and feelings I had at the time, not written almost a year and a half later, like this blog post!
My daughter Leila was born March 16, 2013. She was born full-term and everything seemed normal until her second night in the hospital when she began choking on mucus. To keep our long story short, she was admitted to the NICU and kept there for a week and we left with no answers.
Shortly after she came home I began following your blog as I was up at night feeding her. I was in the Athletic Training program at BYU with Dujuan and was saddened to hear about Mathis' diagnosis. As the days and weeks passed with many night awakenings and little sleep, your blog helped me grateful for each moment I was able to hold her, even multiple times a night.
Leila continued to have frequent choking episodes that lasted anywhere from a few minutes to an hour, when I would have to suction her over and over to get her to breathe. This was unlike anything I had to do with my son and I wondered what was wrong and why it was happening.
During this same time, I read about Dujuan having to suction Mathis and prayed for your family, feeling like I had only a small glimpse into everything you were dealing with. I marveled at the strength you showed and the weaknesses/trials you shared as well. I prayed and hoped that Leila did not have SMA, but knew something was not right. I thought, I am not as strong and Dujuan and his family, I cannot go through all of the things they are going through.
Leila was admitted into the hospital again when she was 3 months old and the doctors did lots of tests. We left a few days later without any answers and the doctors still puzzled. Fast forward to 5 1/2 months old (the end of August)... admitted to the hospital again and put on a feeding tube. This time the geneticists (among other specialists) were called in. They asked if anyone had told us she had low muscle tone and proceeded to tell us they were going to run genetic tests for SMA, Prader-Willi and a general microarray deletion test.
When the geneticists left the hospital room, I cried. I drew strength from your family. Leila and I spent a week in the hospital this time... we left without answers again, but knowing we'd have to wait a couple of months to hear back about the genetic tests. I wasn't sure how I would handle things in the upcoming weeks, waiting and wondering. I knew that if the test came back positive for SMA, I wanted to follow your example and do a hope list. I woke up at night crying, after dreaming that I would have to tell my (almost) two year-old that his sister was in heaven and he wouldn't see her for a long, long time. At this point Mathis had already passed away but you hadn't written your blog about it yet and I cried for your family and what you must be going through trying to explain to your boys about their baby brother.
On Fast Sunday in September, just a few days after being released from the hospital, my family and close friends fasted for Leila. I did not expect much to come from the fast, because she either had a genetic disorder or she didn't... the fast wouldn't change anything. But it changed me, and I didn't even fast (breastfeeding). From that day forward, I was comforted.
I had bad days and good days. Frustrations with her feeding tube, frustrations with lots of doctors' appointments, frustrations with not being able to fix anything and feeling inadequate as a mother. There were times I would break down and cry at the park because Caleb wanted Leila to sit in the swing but she couldn't hold herself up enough to sit in it, even at 6 months old, and I wondered if she would ever be able to do what other kids can do. There were moments of jealousy as I watched my friends' babies that were about the same age begin to do things that she was nowhere close to doing. But there was a sense of peace that came, when I allowed it. The Spirit helped me know that everything would be alright, even if it meant that Leila might return Home sooner than we wanted her to leave her earthly home. I knew in my heart (and not just my head) that whatever happened was in the Lord's hands.
I read and re-read about Mathis and your adventures. I thought of all the things you did as a family, regardless of the difficulties and setbacks. I cried and laughed and smiled as I read and looked at your pictures. I could feel your family's love for Mathis. I continued to draw strength from your family.
With help from occupational/physical therapy, Leila began to improve. I was pretty sure that if she had SMA, it was not type one, like Mathis. Toward the end of September I got a phone call from the geneticist. Leila did not have SMA. I felt relief. I felt guilty that your family had to endure all that SMA entailed and I didn't have to.
On October 3 we found out Leila has a genetic disorder called 22q11.2 deletion syndrome/DiGeorge/VCFS. When compared with SMA, it was a relief to hear this diagnosis. While she will most likely be delayed developmentally (cognitive, motor skills, communication, etc) and will continue to have medical problems that require frequent meeting with specialists, she will be our little angel forever, just like Mathis is yours forever.
Mathis, your family and your story continue to inspire me. He truly is a miracle that touched lives in just a few short months because you were willing to help him make the most of his time on this earth and willing to share those personal and precious experiences. Because of your examples, I have strength to do all that I need to... even when I feel like I can't spend one more hour in a doctor's office or hospital. Because of Mathis, I am more patient with my children and I hug them a little tighter. Because I have been blessed by reading your story, I have been sharing his story with many others too. I know your struggles as a family are far from over as you miss him every day. My prayers continue to be with you. Thank you for sharing Mathis with us.
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