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Oh, boy...Ella is only eight-months-old and already pulling herself up on everything! She prefers being vertical to crawling and the ottoman is her favorite new standing place. We've had to move all remote controls, chapsticks, coasters, books, and the iPad off of it for fear that baby slobber will ruin anything within her grasp. She hasn't quite figured out how to walk around it yet, but she has learned that she can plop down on her booty and then grab a toy on the ground and bring it back up with her. I am pretty amazed that she can do all this at her age and Jeff and I are sure than within months she's going to be running around all over the house which will definitely keep us on our toes. I love experiencing all these milestones with our baby girl, but I must say it seems like it's all happening so fast! I feel like her baby stage was way too short and toddlerhood is approaching so quickly. Before we know it, she will be starting school, going to prom, graduating, and getting married. Sheesh, slow down, sweetie, I am not ready for any of that yet!


Now that Nicholas is three, he is transitioning out of the Early Intervention Program to our local school district for therapy. Today was Nicholas's last visit with Julie, his wonderful home teacher. Nicholas has a special place in his heart for Julie, as do I. She is one of the most kind, generous, loving people I have ever met. She engages with Nicholas in such a way that makes him feel like the most important person in the room. Nicholas gave her a dozen kisses before she left and you can see by the way that he is looking at her in the photo, that he thinks she's pretty darn great. We will miss our weekly visits with Julie so much, Mondays just won't be the same. Julie, please stop by and say "hi" to us every once in awhile when you are in town. You are so wonderful at your job, all the other kiddos that get to have you in their young lives are truly blessed. We will never, ever forget you and the impression you made on our hearts. Nicholas loves you more than a squirrel loves nuts!




























Our sweet little guy had a wonderful birthday that started last night when Jeff and I surprised him with a fish tank filled with four real fish. He decided to name them: heart, spade, club & diamond after I gave him a famous foursome suggestions. Three are glofish and one is a guppy. He loves watching them swim in their tank and really, really wants them to get "out.'" In fact, he was quite upset this morning when we explained that they have to stay in the water in order to breathe. He cried some crocodile tears, but all was well when we distracted him by talking about all the that was to come at the zoo.


I don't know how appropriate "little" is for our baby girl anymore since she's growing like a weed! She's not only growing so quickly, but she is also into absolutely everything. She crawls army-style all over the house and is getting faster and faster everyday. I don't even know why we bother giving her toys because she really prefers to play with shoes (on or off feet), mommy's magazines, and remote controls. She is one busy little girl which is one of the reasons I have been neglecting our blog this month...I am too busy chasing after her and caring for our sweet little boy. Nicholas is truly her biggest fan, encouraging her with his sweet, "go, go" and then laughing when she does. Life may be busy with two kids, but we wouldn't have it any other way.
I am so blessed to be mommy to the two beautiful children pictured above! I had such a great mother's day. Jeff sent me out this morning to have some time to myself so I went to mass and then did a bit of shopping for some spring/summer clothes. Later in the evening we had a delicious dinner with my mom and grandmother (and other family members). Then Jeff and the kids surprised me with a beautiful hanging plant for our patio. Jeff told me that Nicholas just knew mommy wanted some "pretty flowers." Tonight as we put our kids to sleep, I said a little prayer of thanks for both of them, because being their mommy makes me feel so much joy every single day!
Friday, May 27, 2011
Vertical
Tuesday, May 24, 2011
Three is the Magic Number
When Nicholas has playtime we listen to Pandora. We have several favorite children stations that we like to listen to while we play and today one of them played this sweet song, which was sung by Elizabeth Mitchell. It spoke to me as our sweet little boy is now three years-old and there just seems to be something so magical about this age...
Three is a magic number,
Yes it is, it’s a magic number.
Somewhere in the ancient, mystic trinity
You get three as a magic number.
The past and the present and the future.
Faith and Hope and Charity,
The heart and the brain and the body
Give you three as a magic number.
It takes three legs to make a tripod
Or to make a table stand.
It takes three wheels to make a vehicle
Called a tricycle.
Every triangle has three corners,
Every triangle has three sides,
No more, no less.
You don’t have to guess.
When it’s three you can see
It’s a magic number.
A man and a woman had a little baby,
Yes, they did.
They had three in the family,
And that’s a magic number.
Three is a magic number,
Yes it is, it’s a magic number.
Somewhere in the ancient, mystic trinity
You get three as a magic number.
The past and the present and the future.
Faith and Hope and Charity,
The heart and the brain and the body
Give you three as a magic number.
It takes three legs to make a tripod
Or to make a table stand.
It takes three wheels to make a vehicle
Called a tricycle.
Every triangle has three corners,
Every triangle has three sides,
No more, no less.
You don’t have to guess.
When it’s three you can see
It’s a magic number.
A man and a woman had a little baby,
Yes, they did.
They had three in the family,
And that’s a magic number.
song + lyrics by Bob Dorough
Schoolhouse Rock 1973
Schoolhouse Rock 1973
Monday, May 23, 2011
Goodbye, Julie
Now that Nicholas is three, he is transitioning out of the Early Intervention Program to our local school district for therapy. Today was Nicholas's last visit with Julie, his wonderful home teacher. Nicholas has a special place in his heart for Julie, as do I. She is one of the most kind, generous, loving people I have ever met. She engages with Nicholas in such a way that makes him feel like the most important person in the room. Nicholas gave her a dozen kisses before she left and you can see by the way that he is looking at her in the photo, that he thinks she's pretty darn great. We will miss our weekly visits with Julie so much, Mondays just won't be the same. Julie, please stop by and say "hi" to us every once in awhile when you are in town. You are so wonderful at your job, all the other kiddos that get to have you in their young lives are truly blessed. We will never, ever forget you and the impression you made on our hearts. Nicholas loves you more than a squirrel loves nuts!
You are the best and will be so missed!
xoxo
xoxo
Friday, May 20, 2011
Nicholas Turns Three!!!
We spent the day at the zoo with friends and were lucky enough to enjoy some beautiful sunshine. The animals enjoyed the sunshine too which meant we were able to see lots of them!
Later in the evening we went to my parents house for dinner and Nicholas opened his gifts. He really loves all of his toys, games, DVDs, books, clothes and his new blanket. Thanks so much to all our friends and family for making his day so very special!
Happy Birthday Nicholas!
We love you so very much & are so glad you had such a wonderful day!xoxoxo
Thursday, May 19, 2011
Happy Birthday Letter
Dear Nicholas,
It is the eve of your third birthday. Today I have spent a great amount of time reflecting on the last three years. Please know, sweet boy, that each and every day I have spent with you has been a gift. Every moment I get to have you in my life fills my heart with joy. Waking up each morning to your beautiful light brown eyes, that radiant smile, and those adorable brown curls makes every day a good day.
When your daddy and I found out you would be joining our little family, we were overjoyed! When you were growing in my belly, I spent that time wondering who you would be, who you might look like, what activities you would enjoy, and what your little baby voice would sound like. I loved feeling you kick and move in my belly and I felt such joy knowing you were safe and warm in there. What I imagined was nothing compared to who you are. You are beautiful, brilliant, courageous, silly, and so much fun!
I am in awe of your wisdom and your courage. Even with so much adversity affecting you on a daily basis, you manage to maintain a spirit of love and happiness. You rarely complain. You enjoy each moment as it comes. You are such an inspiration to me. You, my little man, make me strive to be a better person. I am blessed and honored to be your mother. Words cannot express how much you mean to me. I love you to the moon and back. I love you with every fiber of my being. I love you so much, that I would trade places with you in an instant. I would take your disease from you and keep it as my own.
When you were diagnosed with Spinal Muscular Atrophy over two years ago, we honestly did not know if you would survive to see your third birthday, or your second one for that matter. You have shown us that we should never doubt your strength and determination to live. You have a zest for life that is a true inspiration to everyone who has had the pleasure of meeting you. Your physical disability in no way limits your capacity to love and be loved, how much fun you can have, or who God created you to be.
People around the world are praying for you, Nicholas. People who have never met you, but who are touched by your story, are keeping vigil for you. I have no doubt that these people have stormed Heaven and God is listening. He has allowed you to stay here with us for three years and we couldn't be more grateful. This past year was especially difficult as you were hospitalized for fifteen days, had surgery, stopped breathing several times, and suffered miserable pain for a period of time before we could figure out a diet that would work best for you. Through all of those very trying times, you managed to keep a smile on your face and your fighting spirit always pulled through and you came out a healthier, happier child in the end.
You are my hero. You are my daily reminder that miracles do happen. You are a living, breathing miracle. Nothing you do or say is taken for granted. Every small milestone you achieve we celebrate as a family. Whether it's more movement in your arms, tolerating sitting up or standing (in your stander) for longer periods of time, or trying small bites of food...all these things are to be celebrated. You continue to beat the odds, you continue to show your doctors that you are one tough little boy, you show us that this disease is not who you are, it's merely a small piece of you. You have never let SMA decide what you can be, you have never let it label you. That, sweet boy, is a daily reminder to me that you have a warrior soul inside of you. You have God's grace flowing through every fiber of your being and people can see His love when they look at you.
I wish you many, many more birthday celebrations. I hope your weak little body can hold out until medical researchers find a cure for your disease. Even if this is the very last birthday you celebrate, always know how very much your daddy, Ella, & I love you. We think you are amazing. You show us that though you do not have a perfect body, you do have a perfect soul.
Wishing you the happiest of birthdays, my sweet son!
All My Love,
Mommy
It is the eve of your third birthday. Today I have spent a great amount of time reflecting on the last three years. Please know, sweet boy, that each and every day I have spent with you has been a gift. Every moment I get to have you in my life fills my heart with joy. Waking up each morning to your beautiful light brown eyes, that radiant smile, and those adorable brown curls makes every day a good day.
When your daddy and I found out you would be joining our little family, we were overjoyed! When you were growing in my belly, I spent that time wondering who you would be, who you might look like, what activities you would enjoy, and what your little baby voice would sound like. I loved feeling you kick and move in my belly and I felt such joy knowing you were safe and warm in there. What I imagined was nothing compared to who you are. You are beautiful, brilliant, courageous, silly, and so much fun!
I am in awe of your wisdom and your courage. Even with so much adversity affecting you on a daily basis, you manage to maintain a spirit of love and happiness. You rarely complain. You enjoy each moment as it comes. You are such an inspiration to me. You, my little man, make me strive to be a better person. I am blessed and honored to be your mother. Words cannot express how much you mean to me. I love you to the moon and back. I love you with every fiber of my being. I love you so much, that I would trade places with you in an instant. I would take your disease from you and keep it as my own.
When you were diagnosed with Spinal Muscular Atrophy over two years ago, we honestly did not know if you would survive to see your third birthday, or your second one for that matter. You have shown us that we should never doubt your strength and determination to live. You have a zest for life that is a true inspiration to everyone who has had the pleasure of meeting you. Your physical disability in no way limits your capacity to love and be loved, how much fun you can have, or who God created you to be.
People around the world are praying for you, Nicholas. People who have never met you, but who are touched by your story, are keeping vigil for you. I have no doubt that these people have stormed Heaven and God is listening. He has allowed you to stay here with us for three years and we couldn't be more grateful. This past year was especially difficult as you were hospitalized for fifteen days, had surgery, stopped breathing several times, and suffered miserable pain for a period of time before we could figure out a diet that would work best for you. Through all of those very trying times, you managed to keep a smile on your face and your fighting spirit always pulled through and you came out a healthier, happier child in the end.
You are my hero. You are my daily reminder that miracles do happen. You are a living, breathing miracle. Nothing you do or say is taken for granted. Every small milestone you achieve we celebrate as a family. Whether it's more movement in your arms, tolerating sitting up or standing (in your stander) for longer periods of time, or trying small bites of food...all these things are to be celebrated. You continue to beat the odds, you continue to show your doctors that you are one tough little boy, you show us that this disease is not who you are, it's merely a small piece of you. You have never let SMA decide what you can be, you have never let it label you. That, sweet boy, is a daily reminder to me that you have a warrior soul inside of you. You have God's grace flowing through every fiber of your being and people can see His love when they look at you.
I wish you many, many more birthday celebrations. I hope your weak little body can hold out until medical researchers find a cure for your disease. Even if this is the very last birthday you celebrate, always know how very much your daddy, Ella, & I love you. We think you are amazing. You show us that though you do not have a perfect body, you do have a perfect soul.
Wishing you the happiest of birthdays, my sweet son!
All My Love,
Mommy
Tuesday, May 17, 2011
School Plan
For that last couple months we have been putting together a school plan for Nicholas. He turns the big ~THREE~ on Friday which means that he is eligible for pre-school in the fall. It also means that he graduates from the Early Intervention Program (EIP). I know he will be so sad to have to say good-bye to the wonderful therapists and teachers from the EIP, especially his Julie, who has become like family to us.
Jeff and I have had several conversations concerning schooling for Nicholas. We discussed sending him to public school, homeschooling, or no schooling at all. We discussed his medical issues, transportation, and readiness. He also thought about his ability to socialize and interact with other children his own age. After weeks and weeks of discussion between the two of us, we finally came up with a plan that we think will suit all of Nicholas's needs.
We will not be sending Nicholas to public school, but he will still receive services from our local school district. His therapists (physical, occupational, speech) will all come to our home and provide services the same way the EIP did. He will see his occupational therapist once a week, his physical and speech therapist every two weeks. He will use a web-cam from home to participate in circle time and free time, which is the perfect way for Nicholas to get in some social time without being bombarded by nasty germs. I will also be working closely with his teacher to create lessons that we can do together at home to help him meet his Individulized Educaton Plan (IEP) goals.
We also enrolled Nicholas in our parish's Sunday School program, which we call Religious Education. That will give him the opportunity to physically interact with his peers once per week and get to know some kids his own age outside of the classroom web-cam situation. It will also help him to better understand our faith and learn more about Jesus, although I think they are already good friends.
We are super excited to start this schooling program we've created for our little guy this fall. I think he is going to absolutely love every part of it!
Jeff and I have had several conversations concerning schooling for Nicholas. We discussed sending him to public school, homeschooling, or no schooling at all. We discussed his medical issues, transportation, and readiness. He also thought about his ability to socialize and interact with other children his own age. After weeks and weeks of discussion between the two of us, we finally came up with a plan that we think will suit all of Nicholas's needs.
We will not be sending Nicholas to public school, but he will still receive services from our local school district. His therapists (physical, occupational, speech) will all come to our home and provide services the same way the EIP did. He will see his occupational therapist once a week, his physical and speech therapist every two weeks. He will use a web-cam from home to participate in circle time and free time, which is the perfect way for Nicholas to get in some social time without being bombarded by nasty germs. I will also be working closely with his teacher to create lessons that we can do together at home to help him meet his Individulized Educaton Plan (IEP) goals.
We also enrolled Nicholas in our parish's Sunday School program, which we call Religious Education. That will give him the opportunity to physically interact with his peers once per week and get to know some kids his own age outside of the classroom web-cam situation. It will also help him to better understand our faith and learn more about Jesus, although I think they are already good friends.
We are super excited to start this schooling program we've created for our little guy this fall. I think he is going to absolutely love every part of it!
Sunday, May 15, 2011
8 Months
Saturday, May 14, 2011
A Little Hurricane
Sunday, May 8, 2011
A Day for Moms
Wednesday, May 4, 2011
Happy Birthday To Me
Today I was blessed to celebrate another birthday. Here is my day in photos...











It was truly a wonderful, memorable, sunshiny day! Thanks to everyone who made it so special, especially: Jeff, mom, Nicholas, Ella, and Eric. I loved reading all my wonderful friends' posts on facebook, enjoyed the phone calls, and all the text messages. I definitely felt the love from friends and family today!
It was truly a wonderful, memorable, sunshiny day! Thanks to everyone who made it so special, especially: Jeff, mom, Nicholas, Ella, and Eric. I loved reading all my wonderful friends' posts on facebook, enjoyed the phone calls, and all the text messages. I definitely felt the love from friends and family today!
Donate to Nicholas' Memorial Fund
Information about Spinal Muscular Atrophy (SMA)
Click HERE to learn about Spinal Muscular Atrophy.
About Me
- Jessica
- Washington, United States
- We are the Gustafsons: Daddy Jeff, Mommy Jessica, Big Brother Nicholas and Little Sister Elizabeth. We started our blog in 2008 when our son was born as a way to document our life. Jeff and I feel so blessed to be parents to two amazing kids. Our oldest, Nicholas, was diagnosed with a terminal condition called Spinal Muscular Atrophy. We are praying for a cure for Nicholas and all children who suffer from this physically limiting diagnosis. We are also parents to a little girl who who brings us sunshine and laughter everyday. We treasure every moment with our sweet kiddos. Please let us know you visited our blog by leaving us comment. May God bless you today and always.
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Falling In Love
Our Wedding Day
Brother & Sister Love
Motherhood
Nicholas's Story
Click HERE to read Nicholas's story from birth to his diagnosis with SMA at 10 months-old.
All About Nicholas
sweet. easy-going. smiley. happy. fighter. playful. courageous. loving. joyful. amazing. gift. wise. strong. handsome. kind. brave. Heaven-sent.
Nicholas's Birthday
Nicholas at 1 Year
Nicholas at 2 Years
Nicholas at 3 Years
Nicholas at 4 Years
Nicholas at 5 Years
Nicholas at 6 Years
All About Ella
loving. cuddly. toddler. curious. explorer. walker. silly. happy. sleeper. blessing. fearless. adventurous. kisser. sassy. dancing queen. spirited.
Ity Bitty Baby Ella
Ella at 1 Year
Ella at 2 Years
Ella at 3 Years
Ella at 4 Years
Ella at 5 Years
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