Happy 30th birthday to my sweet husband! I just found these photos...they are a couple years old, but I love discovering ones I haven't seen in awhile. Love you honey, I hope your day was wonderful!

Wave of Emotions

Parenting a child with a terminal illness means that I ride a wave of emotions on any given day. I can go from elation at him saying a new sentence to sobbing tears of sadness when I watch him trying so hard to do things his little sister can do with ease. The thing that tugs at my heart right now is when Nicholas says, "Mom, I want to get down and play." What he is really telling me is that he wants to run around and chase his sister, play with toys like she can, and follow me around as I do my daily chores. It is the new thing that makes me cry nearly every day. At three and a half, Nicholas should be able to walk, to run, to jump, to hop, to move his arms and legs every which way. He is starting to realize that he is physically different from us and his sister, but he does not have the vocabulary to explain to me how not being able to move makes him feel.

Nicholas does not have his own power wheelchair. When he got one to trial at home last year, he absolutely hated it. He wanted nothing to do with it and when we would strap him in it and encourage him to move about, he would cry and whine until we would take him out. Just yesterday I asked if he would like to try one again and he answered with and enthusiastic "yes!" So I will be contacting our rep this week to see if we can get a loaner chair again for Nicholas to try out. It might just be what he needs to feel like a "normal" kid.

Nicholas really is the sweetest boy and never, ever complains about anything. He is happy just to be with his family and friends. He just likes to feel included with whatever is going on around him. I often think about how he is so similar to other kids his age and rarely even notice that he cannot move anymore. Not moving is just part of who he is and who he has always been. The part that I have the most trouble with is the terminal part of his diagnosis. The unknown is what terrifies me the most. I would be the happiest mother in the world if I left this world before my children, which is the natural order of things. I know a small number of people living with SMA who have surpassed the prognosis of SMA. Some men and women are in their 30s and 40s. I recently read a story about a mom who has SMA who gave birth to two children. There is a young man who just started his first year of college last fall. These men and women inspire me and I cling to hope that Nicholas will live to see adulthood. I can only pray that medical researchers can get funding to find a cure in the next few years, which would definitely prolong Nicholas's life and would hopefully offer a better quality of life, allowing him more movement, and many more years on this Earth.

A few nights ago, I lost hours of sleep because I went to what I call the "dark place." It is a place where I imagine the words I will say about my son at his funeral, the place where I wonder what we will dress him in when his casket is lowered into the ground, the place where I try to imagine what life would look like without him here. It is an awful, dismal, scary place that leaves me bawling and sobbing and shaking with fear. It makes me feel helpless and powerless and lost. I can only allow myself to go to this "dark place" once every six months or so, because it leaves me emotionally drained and depressed for several days at a time.

The only thing that pulls me out of the darkness is imagining my son's beautiful face. His wise eyes remind me that neither he nor I are in charge of his destiny. He smile tells me that he chose this life. That his life of suffering is changing people's hearts, one at a time, mine included. He reminds me that he is bringing people (even long time believers) closer to Christ. He reminds me that this earthly life is but a mere blip in time and that we will eventually spend all of eternity together in Heaven. Only then can I return to the present moment and remember how blessed I am that this amazing little soul chose me to be his mommy. I could never have asked God for a more precious gift and there is no way I can ever repay Him for his generosity. What I know I can do, what I will spend the rest of my life doing, is trying to live a life of love. A life that will make my son proud. I will tell his story while he is here and for years after he is gone. I will make the best of each moment and celebrate his accomplishments. I will make sure that each person I encounter feels a bit more joy and happiness because that is how people feel when they are around my son. He is a shining example of true love, compassion, and patience. Nicholas has forever changed our world and we will never, ever be the same.

Bathroom Remodel

Our ugly, outdated bathroom before the remodel:


The frame for the new pocket door in the middle of the renovation:

The finished bathroom:




The last couple of weeks Jeff and I, along with our friend, Nathan, who is a contractor, have been remodeling the main bathroom in our house. Our house consists of two bathrooms and both are tiny. The main bathroom has a bath tub where the kids take baths everyday. Because the bathroom is so small, the door used to open into the room which made it super difficult to get Nicholas in and out of the tub since he is growing to be such a long boy. Jeff had the idea to put in a pocket door to allow us more room to maneuver Nicholas and make for an easier time getting him in and out of the tub. Since we had to tear out a wall, we decided we should also update the extremely ugly mustard yellow and white surround. Nathan tiled both the tub surround and the floor, we bought new tub fixtures, new light fixtures, and added a nice white wood trim around the base of the floor. We also painted the cabinets white and the walls a neutral color. Now we just have to add a new mirror, towel rack, shower curtain, and accessories. We have been living in a mess for the last couple of weeks and I am so happy to finally have the bathroom renovation almost complete!

Bathroom Update

Before



After






This is our on-suite bathroom and it was in desperate need of an update. It is a small space and the dark wall color and cabinets made it feel like a cave. I painted the walls a light grey/blue to give it a more open feel and added lots of white accents which I think make any bathroom feel clean and bright. I used the same mirror, just painted the frame white and I painted the cabinets white as well. I bought new towels and a "shower curtain" which is actually a window panel to cover our ugly stand-up shower. I swear no matter how hard I scrub that thing, I cannot get it clean enough and it drives me crazy. So the curtain helps hide the shower and I am happy-out of sight, out of mind. I also bought a new cabinet to hold all of our toiletries and a new shelf to hang necklaces and display some items. We picked out new light fixtures since the ones we had before kept flickering. I also ordered glass pulls for the cabinet. I added pops of color with coral: a candle, soap, and bought a new floral jewelry box to organize all of my rings, bracelets, and earrings.

We are currently in the middle of a true bathroom remodel of our main bathroom complete with new tile for the floor and bath tub, paint for the cabinets, new wall color, new trim, and a pocket door to help get Nicholas in and out with ease. We plan to use the leftover floor tiles in this as well which will look nicer than the linoleum. I will post photos of our main bathroom space when it's finished next weekend.

Our next home renovation project will be hardwood floors in early spring. I am SO excited to rip out our yucky carpet and replace them with beautiful wood flooring! 2012 is a year of home projects for the Gustafsons!

Ella is 16 Months Old

Today Ella is sixteen months-old! She is a busy, busy girl who practically runs everywhere she wants to go and often runs herself into walls because she is going so fast. She has just started climbing up on the dining room chairs and climbs up on the sofa more often. She hasn't climbed out of her crib yet, but I am sure that is just around the corner.

She talks in baby babble all the time and even though we cannot understand her, she knows what she's talking about. She is a girly girl who loves bows in her hair and pretty skirts, but she also likes to play rough-and-tumble with Grandpa. She also loves when mommy spins her 'round and 'round the room. Her giggles are contagious and Nicholas laughs whenever she does. She loves to be chased, tickled, and picked-up. She will sit on a kitchen chair and watch me cook dinner and be perfectly content with a sippy cup and a wooden spoon.

She can be wild as a monkey and gets into everything. She loves the Tupperware drawer and pulls it all out to play with on the kitchen floor. She also loves to get into mommy's purse, the garbage can, the file cabinet, and the pantry. Pretty much anything that is off-limits excites her. She doesn't really listen when we say "no" and will usually do whatever she wants unless we distract her with something else. She loves to play hide-and-seek with our things and recently misplaced my phone. We finally found it after an hour of looking under Nicholas's bed.

She loves to be on the go and gets giddy with excitement when I put on her coat and shoes because she knows she will get to ride in the car. She loves to look out the window and is perfectly content in her car seat. She also loves to go to the store. Yesterday she went to Safeway with my mom and smiled at all the people and waved like she was in a parade. I sometimes feel bad that we are home most of the time, but also have to remember she is only 16 months and has plenty of time to explore the big world outside her front door. I do think it would do her some good to be in a toddler tumbling class or go to story time at the library more often, so I think between my mom and myself we can get her out of the house once a week or so for more social time.

We are blessed to be parents to a spunky little monkey and thank God for our munchkin every single day. Happy 16 months, Elizabeth Rose!

Back to Normal

It has been a few weeks since I have updated everyone on Nicholas. I am happy to report that our sweet boy has been feeling absolutely fabulous since his return home from the hospital nearly a month ago. He has been asking to do things that he refused to do while not feeling well: sitting up more, moving his legs and fingers, singing, playing, and expanding his vocabulary. He also enjoys getting out of the house for quick trips to my parents house or the store.

His heart rate has been awesome-better than before his hospital stay at 90-120 while awake and 70-100 when sleeping. I know that the switch from c-pap to bi-pap has helped with that because his body gets such good rest while on it. He is back to baseline, only needing bi-pap for sleeping, but he also has "rest time" in the afternoon where he wears his Pixi mask with his bi-pap on and watches a DVD in his room. He is all about being in his room now. I think he is a typical three-year-old in that respect. His oxygen levels have also been outstanding. We haven't seen his O2 levels drop below 94 since being home and his typical numbers are now between 98-100, which is higher than normal for him. He now gets his treatments (vest, cough assist, suction) three times per day. We stopped giving him liquid albuterol a couple of weeks ago as we don't feel that he needs it right now, but still have lots left over that we can use at our discretion.

We have been reading lots of books together and his new favorite is a book that his Aunt Jami & Uncle Kris bought him for Christmas. It's called Jingle and has an interactive dog that barks and makes sounds when I read certain lines in the story. He thinks it is so funny. He also likes playing with a magnetic Curious George game that Santa brought. His new cartoon obsession is Wow, Wow, Wubbzy. He asks to watch it about thirty times a day and is happy to re-watch the three DVDs we have of that cartoon over and over again.

We are currently in the middle of a bathroom re-model to better accommodate Nicholas. We have two bathrooms in our house and both are small. Small is probably an understatement, they are darn-right tiny. The main bathroom is the only one with a bathtub so we use it to bathe Nicholas and because he is growing so much, it can be a challenge to get him out of the tub and then maneuver around to open the door and get out into the hallway. So we decided to put in a pocket door that slides into the wall so that we have a lot more room to get Nicholas out. And since we had to tear out part of a wall, we figured we may as well update the mustard yellow (circa 1972) colored bath surround and linoleum floor with tile. It should be mostly complete by Sunday evening so I will post some before and after photos next week.

Nicholas is such a joy and blessing to us. We are beyond thrilled that he is back to his happy, sweet self and has been feeling so wonderful these past few weeks! Thank you to everyone who reads our blog and who keeps praying for Nicholas. We really appreciate it!

Pinterest Project

There is not too much going on around here these days. I am in the midst of a master bathroom update and the colors above are a hint of the new bathroom colors. I couldn't find one image that perfectly showed the colors I have chosen, but it is a mix of turquoise, aqua, light grey, dark brown and white, with pops of coral. The walls and cabinets have been painted, the new hardware is installed, and a new storage unit has been purchased. Now I just need a few days to put it all together. Can't wait to see how it turns out. I am already feeling inspired in 2012!

2012 Inspiration

This year I am not making any resolutions. Instead I am going to use Pinterest to inspire me to create, accentuate, and add a bit more color to my life. I am a newbie to Pinterest and have found it to be addictive and helpful in inspiring me with new recipes, decorating tips our home, or simple crafts for my little ones. I have created several pin boards and have pinned hundreds of ideas that I am sure I can do myself. The idea is that I will find at least one craft or idea per month and either make it or use it for inspiration. My hope is that I will be challenged and inspired throughout 2012 and will be able to give my unused creativity an outlet.

My first project of this year is already underway. These two photos are a quick sneak peak of a couple of changes I am making to our master bath:


I also hope to find some inspiration for my same old boring hair and add some colorful accessories to my wardrobe:


These are a couple of crafts that look easy and fun to make:


This is a great idea for the summer months:

All of these recipes look absolutely delicious and I know my husband will be happy with a variation in my same old cooking routine:



And I can't forget the kiddos. The balloon idea is for Nicholas's birthday and maybe Ella's too. After seeing how much they both LOVE balloons, I can't wait to have them wake up to their rooms FULL of balloons.

I am pretty sure both Nicholas and Ella will enjoy finger painting this way:

It should be a fun 2012! Happy New Year!