Under One Roof

After sixteen days in the hospital, which beat Nicholas's last stay by one day, we are finally home! Nicholas was discharged Friday night and was thrilled to be home! I think for the first hour or so that we were home, he was kind of in shock (and super tired) because he kept looking around saying, "home" like he couldn't quite believe it. I know he was finally relived to be out of the hospital and sleep in his own bed, in his comfy pajamas, listening to his Coldplay lullaby CD.

Today was a wonderful day spent together as a family. Nicholas and Ella just wanted to play with their balloons all day and I jokingly told Jeff that we could have saved ourselves a good chunk of change on Christmas gifts if we had realized how much they both loved helium-filled balloons before we started shopping.

It was nice to do normal things together: eat breakfast, talk and laugh, decorate for Christmas...things I would have taken for granted before our long hospital stay. Now these moments feel like gifts-small treasures that I tuck away in my memory and enjoy immensely while they are happening. To be honest, we really thought that Nicholas may not survive this hospital stay. There were several times that we were on our knees pleading with God to allow us more time with our son. Seeing our child so fragile and so, so sick was extremely heart wrenching and it is nothing we hope to experience again anytime soon. Fortunately, Nicholas is the toughest little kid I have ever met and he continued to surprise and inspire us (and his doctors and nurses) time and time again. Obviously because Nicholas has SMA, his life will most likely be shorter than we would hope, but it puts life in perspective and makes us realize what is important, and for us that is only one thing: to show our love for each other as much as possible and to create as many wonderful memories as we can in the time we have together as a family.

I already got the ONLY thing I wanted this year for Christmas-to be home together as a family and to have our son feeling much more like his happy, joyful, sweet little self. God is good.

Ella is 15 Months & Nicholas Update

Today Ella is fifteen months old and because we have been with Nicholas in the hospital for the past two weeks, I have not taken any recent photos of our little munchkin. So, being the crazy mom that I am, I snuck into her room tonight while she was sleeping and got this adorable photo of her. I am glad I did it because 1) she didn't wake up like I expected her to and 2) I can never get a good photo of her sleeping.

She is a sweet little girl and it is so, so tough to be away from her all the time while I am at the hospital with Nicholas. I miss being around her and she has been a bit moody with me today because I think she's upset that she doesn't wake up to her mama every morning. My mom has been taking great care of her every week day for the last couple of weeks and she has really bonded with her Gramme.

She loves to give kisses now and I hear that she has been kissing one of my mom's Santa's that is the same height as her. She also gives high fives and likes to dance when ever she hears music of any kind. She has cut two new bottom teeth for a total of six teeth now. She LOVES food and eats anything and everything you give her. If she sees you eating, she comes running over and makes mmm-mmm noises until you share. She also likes to get into things that are off-limits and runs away with them until we chase her and get the items back. Cell phones and purse items are among her favorite off-limit treasures.

She is the sweetest little girl and adds a lot of comic relief when our days feel overwhelming and heavy. I cannot imagine our life without her, she is a true blessing to us all.

Nicholas continues to improve slowly but surely and will most likely be discharged on Saturday. We are thrilled to be able to bring him home in a few days and will be so happy to get out of the depressing PICU where everyone is sick and all the doctors want to talk about are the negatives about SMA. I have to bite my tongue everyday and try not to yell at them that Nicholas is not a statistic, that he is a fighter and that he and God make the rules. I also have to constantly remind them that while I know they are good at their jobs, they do not know my son and they certainly do not much about SMA. I rely on the SMA protocols from Dr. Schroth and mention them often. Honestly, if it were up to them, they would keep Nicholas for another two weeks until he is completely weaned from his bi-pap except for sleeping. I explained to them that that is something we can do at home where he is away from all the germs and in a comfortable environment where nurses aren't disturbing him every 30 minutes.

I also had to advocate for him today to get The Vest which is a machine that shakes his torso so we can more easily get secretions out. His pulmo didn't want to order it for us. This is the same man who refused to switch him from c-pap to bi-pap until this illness and who wouldn't order home oxygen for us until I could prove he needed it. He told me that he didn't think it was necessary for Nicholas as his cough assist would be just fine and I told him I disagreed completely and that Nicholas needed one to be able to move stuff so that the cough assist can bring it out. He muttered something about being medically responsible and not ordering everything and I shot back with, "Nicholas needs this system to help him stay well and out of here. I think you would want that as much as we do." He finally relented when I wouldn't back down and later I also had another pulmo on charge back me up as well. So we are getting both The Vest and a nebulizer when we come home. I thank God the doctors have the good sense to listen to me and are sending him home soon. I don't think Jeff, Nicholas, or I could handle another week of that place!

You can see we have been getting more smiles out of him in the past few days and he has been talking more and wanting to play. He loves to play with his balloons that Getty sent him and yesterday Child Life brought him a truck and a coloring book so we spent hours playing with both. He colored a nativity picture for his room which we hung on the wall and he loves to look at. He was off his bi-pap today three times for 1-2 hours each time and did great. He is not any any extra oxygen and while he still has a lot of secretions, they are not thick and glue-like anymore.

We cannot wait to bring our little hero home in a couple days!!!!

It Takes A Village

Nicholas has now been in the hospital for thirteen days. He is slowly starting to feel better and breathe easier and may be able to come home by the week's end. He is one tough little boy, fighting through this devastating virus with everything he has and he is truly our hero. Today was his best day since his admission on December 1st. He has been smiling, talking, and laughing all day and the joyful spirit is starting to come back. It feels as if the dark rain clouds are parting and the sun is shining through again and it feels absolutely wonderful.

During these last thirteen days that Nicholas has been hospitalized there have been so many people that have helped us in various ways, so I wanted to publicly thank them for all they have done.

My Mom has been amazing! She has come over to our house pretty much every single morning when Ella wakes up. She is here very early-around 5:30-6:00 a.m. which is hours before our baby rises and never complains. She dotes on our daughter all day and makes her feel like the most important toddler in the world. It is such a help to us as one of us always is with Nicholas at the hospital and Jeff has been trying to put in as many hours at work as he can.

My amazing neighbor & friend, Leslie watches Ella on the days when my mom has to work. Today she brought her son, Harry, over and the three of them baked us some delicious snicker doodle cookies.

My brother, Brett, & his girlfriend, Lisa who are home for Christmas from Florida watched Ella for us this afternoon. They also came to the hospital to visit Nicholas yesterday with my other brother, Eric, his wife, Tina, and my mom.

Several SMA moms, especially Kate Mathany who have been messaging me on facebook with tons of great information about bi-pap settings, intubation/extubation protocols, cough assist settings and the like. Kate & her daughter, Getty, also sent Nicholas a cute polar bear stuffed animal and some balloons which brought a huge smile to his face.

My mother-in-law, Joni who is here from Arizona for the birth of her seventh grandchild. She has been to the hospital to see Nicholas three times in the last week and has been such an amazing emotional support for me.

My husband Jeff has been an absolutely perfect man in these last thirteen days. We promised for better or worse and parenting a terminally ill child is my idea of the worst thing that could ever happen in a marriage. Many marriages wouldn't survive a challenge such as ours, but our marriage has only gotten stronger. We rely on each other emotionally and are there to support one another through the most difficult decisions we have ever had to make. My husband has been staying at the hospital with Nicholas as much as he possibly can and spending quality time with our daughter when he is home. God gave me the most loving, wonderful husband and for that I am eternally grateful. I could not imagine taking this journey with anyone else.

We are so blessed to have so many people who care so deeply for our family of four! It definitely takes a village in tough times like these. Please continue praying that Nicholas will be fully recovered and able to return home very soon.

Parallel Universe

For the past week it feels as if we are living in a parallel universe. A universe where no one sleeps, people are in and out at all hours, and you are afraid at any moment that your world may change forever.

Nicholas has been in the PICU at Doernbechers Children's Hospital since last Thursday. He has a respiratory virus that is causing him to desaturate because of the mucus build-up in his upper airway. He was intubated last Monday night because he was having such a difficult time breathing even with increased bi-pap settings and respiratory treatments. All day Monday he cried and struggled to breathe. His respiratory therapist changed the settings several times on his bi-pap to try and give him some relief, but nothing was working. When we were told that they wanted to intubate, Jeff and I were beside ourselves with worry as the doctors were optimistic but explained the risks associated with intubation in a child with SMA are high. We sat by his bedside and prayed with him. We uttered the most difficult words that have ever passed our lips: that we love him and if God called him home, he could choose to follow the angels into Heaven. Thankfully, our prayers were answered and the intubation was successful. Nicholas had two full days to rest and allow the ventilator to breathe for him and give his weak little body a much needed break.

He was successfully extubated yesterday afternoon and has been resting a lot and has been able to get out a lot of junk in his upper airway with regular treatments which consist of albuterol & saline nebs, the vest, cough assist and deep suctioning. He has a long way to go to get over this illness, but we are feeling very optimistic that with some time and much needed respiratory therapy, he will be able to come home before Christmas. It would be our own small Christmas miracle.

When Ella comes to visit Nicholas in the hospital, he is beside himself with joy. It is truly the only time we see him smile lately. The love he has for his sister makes my heart swell with happiness.

Nicholas is lucky to be at Doernbechers where he is getting the best care. He has some pretty great nurses. Calley is our favorite night nurse and Stephanie is our favorite day nurse. They are so attentive to his needs and try their best to make him feel comfortable and happy.

Last weekend Jeff had an easy time getting him to smile when he blew bubbles around the room. Then he let Nicholas blow bubbles with his bi-pap mask which Nicholas thought was so funny.

Every day I see a bit more light come into his eyes, but it so difficult to live in this parallel universe feeling constant anxiety and fear that things could change at any moment. Please keep our sweet child in your prayers.

Thanksgiving 2011

We had a wonderful Thanksgiving at my parents' house yesterday. It was a small group: just our family, my mom & dad, and brother and sister-in-law. It was relaxing and low-key with scrumptious food which is how Thanksgiving should be.

The beautifully decorated table

Aunt Tina and Ella

Dad carving the turkey

Mom making her yummy gravy

It was difficult to get a good photo of these two since Ella is such a busy-body these days

Mmmm...a delicious Thanksgiving feast

Ella was at one end of the table...

and Nicholas was at the other end

After dinner Ella decided to walk around in mommy's shoes

After looking through our photos, I realized that I do not do a very good job of getting family photos of the four of us. I will have to work on that!

Happy Thanksgiving!

When You Become a Mother...

1. Where you once believed you were fearless, you now find yourself afraid.

2. The sacrifices you thought you made to have a child no longer seem like sacrifices.

3. You respect your body ... finally.

4. you stop to smell the roses, because your baby is in your arms.

5. You respect your parents and love them in a new way.

6. You find that your baby's pain feels much worse than your own.

7. You believe once again in the things you believed in as a child.

8. You lose touch with the people in your life whom you should have banished years ago.

9. Your heart breaks much more easily.

10. You think of someone else 234,836,178,976 times a day.

11. Every day is a surprise.

12. Bodily functions are no longer repulsive. In fact, they please you. (Hooray for poop!)

13. You look at your baby in the mirror instead of yourself.

14. You become a morning person.

15. Your love becomes limitless, a superhuman power.

16. You finally realize that true joy doesn't come from material wealth.

17. You'd rather buy a plastic tricycle than those shoes that you've been dying to have.

18. You don't mind going to bed at 9:00 p.m. on Friday night.

19. You realize that the 10 pounds you can't seem to get rid of are totally worth having.

20. You discover an inner strength you never thought you had.

21. You no longer rely on a clock — your baby sets your schedule.

22. You give parents with a screaming child an 'I-know-the-feeling' look instead of a 'Can't-they-shut-him-up?' one.

23. You take the time for one more hug and kiss even if it means you'll be late.

24. You learn that taking a shower is a luxury.

25. You find yourself wanting to make this world a better place.

26. You didn’t believe in love at first sight before, but now you do.

27. You start to appreciate Sesame Street for its intellectual contribution.

28. You have to quit watching the news because you see every story from a mother's perspective and it breaks your heart.

29. You just love life more - everything comes together and becomes better because of one tiny person and your love for them.

30. You finally find out the real reason you have those breasts.

31. Nothing is just yours any longer. You share EVERYTHING!

32. No matter what you've accomplished in life, you look at your child and think, "I've done a GREAT job!"

33. You want to take better care of yourself for your child.

Showered With Love

Today one of my former students and her family came over to visit. I had not seen the Matous family since Nicholas was a baby, over three years ago. Sarah was in my first grade class several years ago and to see her as a grown-up sixth grader made me realize how quickly times passes. Nicholas and Ella loved playing with all three kids which gave Jessica and I lots of time to chat. Jessica shared with me that several years when she was a nurse, one of her favorite patients was a little boy named Jack who also had SMA. She was happy to finally get to meet Nicholas after hearing so much about him via facebook. During the five years I taught elementary school, I met some pretty amazing families. Families who spread love and kindness to all those they meet. The Matous' are one of those families.

Jessica had read my post on facebook a few weeks ago when I asked for prayers for Nicholas. The next night, she went to an art auction with a friend and the artist asked all the people that were there to write down one wish. Jessica wrote a wish for Nicholas, asking for him to be well and breathe easy. The announcers drew the individual wishes out of a hat and Jessica's wish was drawn first. She opted to have her wish read aloud and all of the people there said a prayer for Nicholas. She then was able to choose a prize and chose this beautiful, inspirational quote for us:

It says: "You made it beautifully through yesterday, you are making it bravely through today, and you will make it undoubtedly through tomorrow. You will."

I am so humbled by the Matous family's generosity of spirit. I get emotional just thinking about that room full of strangers silently saying a prayer for my son, a little boy they have never met. I am in awe of such small acts of kindness and they mean the world to us. Thank you, Matous Family, for thinking of all of us, especially our sweet Nicholas. God bless you!

Very Thankful

In reflecting on all we have been abundantly blessed with, I have realized that there is much to be thankful for. I have a faithful perspective to realize that God has blessed us with so much. Even when things seem tough or life gets messy, counting our blessings really helps me to realize that our life is really pretty darn fantastic. Here's why:

• We live in a small town in a very safe neighborhood. I love that we know our neighbors and they are always willing to lend a helping hand.
• Technology is amazing! I love that Nicholas is able to be a part of his preschool classroom by using his webcam. He gets to participate in class without being exposed to all the cold & flu germs and he absolutely LOVES it. He also loves playing independently on the iPad because we now have so many fun and easy apps for him to manipulate. Communicating with other SMA parents via Facebook or SMA Space gives us support and helps us get questions answered quickly. We also love being able to Skype with friends and family who live far away. There is something so awesome about seeing a loved one's face while talking to them.
• We live only a couple miles from my parents. My mom and dad are a HUGE help when it comes to anything we need: picking up groceries, watching the kids for a few hours, and letting us stay there when we do minor home renovations. We do not know what we would do without them!
• Better credit scores. Jeff and I have been working diligently on paying down debt and living on a budget. We have been consistently making all of our payments on time for the last four years and our credit scores are now better than ever. This is so important to us as we are trying to build equity in our home and be debt free in the next two years. It also allows us to build our savings for the kids' school funds and future home renovation projects.
• Nicholas's AMAZING school teachers & therapists. We are blessed with a great team that do anything and everything to provide Nicholas with the best education possible.
• Our Health. I know it seems cliche to mention this, but I am grateful that Jeff and I can meet all of Nicholas's medical needs because we are healthy and able bodied. I am also thankful that Nicholas is quite healthy despite SMA and rarely gets sick thanks to his strict diet plus vitamins and supplements. And we are so thankful that Ella is healthy and meeting all the milestones of a typical fourteen-month-old.
• Breast milk. I am so thankful that I am still able to nurse Ella and pump breast milk for Nicholas. Breast milk truly is nature's super food and I am so happy that I can provide both of my children with the nourishment and antibodies they need to grow and stay healthy.
• Helpful siblings. I am so thankful for my brother, Eric, and his wife, Tina. They drop everything to help us out when we need them. They are always so supportive and love our kids so much. Also, my sister-in-law, Eva, will always come and watch the kids when we need her in a pinch, and she is known for buying the perfect birthday or Christmas gifts for both kids.

Happy Thanksgiving!

Ella is 14 Months Old

Our silly little pumpkin is fourteen months-old today! She is growing much too quickly for me. Last night when she was in the bath tub, I was overcome with emotion as I realized just how much she has grown and changed in the last fourteen months. It made me aware that before I know it she will be miss independent, heading off to preschool, making play dates with friends, and filling up her social calendar with other important things. Children don't stay babies for very long!

Ella is starting to make more vowel-consonant sounds so I am sure in the next couple months she will be a mini chatterbox. She likes to climb on everything and has taken a liking to sitting on the hearth around the fireplace or climbing up to sit on the sofa. For Christmas we plan to get my childhood mini rocking chair out of my parents' attic to spruce up and give to her. I know she will love having her very own little seat in the living room. She has moments where she can get impatient and frustrated when things don't go her way. She is at the age where she wants to be independent, but still needs help to do things. Lately she has taken to shrieking banshee style which causes us to cover our ears and kindly ask her not to shout because it's too loud.

Last night for dinner she tried a more grown-up fare: crab cakes, gnocchi, and asparagus. She really loved the gnocchi, which is good news because I love them, but Jeff doesn't, so when I make them again I can at least count on Ella and I eating them. She still eats some baby food, because it is very important to me that she gets healthy calories, along with breast milk three times a day.

She and Jeff really bonded while I was on my California trip. She loves to crawl up on the couch and cuddle with her daddy and says, "Da-da" all the time. Jeff pushes her around the living room on her princess car which she thinks is super fun. Sometimes she will go and sit on her car and stare at her daddy until he gets up to push her. It amazes me how smart she is at this age!

Another thing she loves is to use our cell phones. We tried to give her the ones we don't use anymore to play with, but she can apparently tell the difference and prefers our active phones over the old ones. You can see in a photo above how she plopped down next to her daddy with my phone while Jeff played a game on his.

We are truly so blessed to have such a sweet, happy girl for our daughter. She is a little love-bug and a little slice of Heaven here on Earth. Happy 14 months, Ella Roo!!

Why Does God Create Disabled Children?

I read this passage this morning after hearing of another child who lost his life to SMA. The words written as an answer to this question make me cry every time I read them. They are exactly how I explain Nicholas's existence, written in a more eloquent way. Nicholas is a gift sent from above and a blessing to us all.

Question:

A friend gave birth to a baby with a rare condition that has rendered her severely handicapped. She is not expected to live much past her third birthday. I just can't understand why God does that. If life has a purpose, what is the purpose of such a short and sad life?

Answer:

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.

Some souls are so lofty, it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

By Aron Moss