Life is Fragile

Yesterday I had to save my child's life. It was the most scary thing I have ever had to do. I am still numb with shock and can cry at the drop of a hat because I cannot believe it happened.

Nicholas had just woken up from his afternoon nap and I suctioned him quickly, buckled him into his car seat, put Ella in the car, and began driving the six miles across town to pick Jeff up after his first day of work (he carpools). On our drive, Nicholas was coughing a little bit and I felt very guilty that I hadn't taken more time to suction him. He looked uncomfortable and tired, which is unusual for him because he loves to ride in the car. His car seat is behind my seat so I can keep an eye on him in the rear view mirror at all times while I am driving. As we drove through town, his coughing got worse and I kept talking to him to try to soothe him and to see if he was okay. Just as we were about to make a left-hand turn into the Shell Station where Jeff was waiting for us my son stopped breathing. His eyes were wide and panicked. I screamed at the top of my lungs, "Breathe, buddy, breathe!"

It was 5:00 p.m. and there were dozens of cars zooming past us. I couldn't make a left turn. My son couldn't breathe. I put my car in park in the turn lane, unbuckled Nicholas from his car seat and pulled him from the car, saw that his lips were starting to turn a purplish-blue. I cleared his airway with my finger, turned him upside-down and swept his airway again (and this time cleared a large amount of mucus), saw that he was still not breathing, and laid him down on the drivers seat to administer CPR. I gave him one huge breath, checked for breathing, swept his airway again, and gave him another huge breath. After I gave him the second breath, he began to cry and breathe on his own again. I scooped him up and held him close to me and sobbed. By this time, a woman across from us in her car, who was taking a right-hand turn, started yelling, "Are you okay? Can I help you?" I told her my son stopped breathing and that now he was fine and I was going to cross the street and pick-up my husband. I put Nicholas back into his car seat and drove to get Jeff.

As soon as I saw my husband, I lost it. I started sobbing uncontrollably. Jeff got Nicholas out of the back of the car and held him in his arms the six miles back to our house.

As we were driving home I realized that no one stopped to help us. No one stopped to make sure we were okay. The only person who seemed concerned at all was the woman across the street. At one point there was a car that pulled up behind me to take a left turn, and they just went around us. Now, this whole situation only lasted a couple of minutes, and it was dark so passerbys couldn't really see what was going on, but it left me with a sense that others just don't take time to care. People are so busy in the mundane tasks of everyday life, that they cannot see that a child almost lost his life last night. It made me feel really, truly alone.

Nicholas is fine now. We brought him home after that scare and gave him what we call a treatment, his respiratory therapy, to clear out the rest of his secretions. He spent the rest of the evening watching his favorite cartoons, talking, and playing like nothing eventful had happened at all. Jeff and I kept hugging and kissing him all night and are so thankful he is still here with us. It make us realize that

life

is

fragile

We don't know how much time Nicholas has, or how much time any of us has, for that matter. It makes us remember that we should live each day to the fullest. We need to tell our friends and family how much we love them, how important they are to us. Every moment with our son is so special and we are so glad we will continue to have many more moments with him.

Just Us

Brother and sister tees

Our not-so-little guy lounging on the couch watching his new favorite movie: Finding Nemo
Daddy adores his baby girl


She's an excellent sleeper

A bit of snowfall at home this week (can you tell Jeff took this picture)

The following photos are all from Thanksgiving...

Eric and Tina

Dinner at my Mom and Dad's house. Nicholas wasn't feeling so great and wasn't too happy about getting his photo taken

We had dessert at Kris and Jami's house-Grandma Steph, cousin Zoie, and Ella

Me with my sister-in-laws-Jami and Eva

a turkey day nap

This Thanksgiving a spent a great deal of time reflecting on what I am thankful for this year:

1. That Nicholas is still here with us, and all things considered, doing pretty well despite his SMA.


2. Our sweet baby girl who joined our family just 10 weeks ago. She's a wonderfully delightful baby. God knew we needed another easy-going baby because having a child with special needs monopolizes much of our time and He sent us the perfect girl.


3. The fact that Jeff just got a job after being laid-off for three months! We desperately need to keep our health insurance for the kids (especially Nicholas) and with Jeff working, we won't have to worry about losing it or paying a ton for it.


4. Having a warm home during these downright chilly autumn days. I know that in this economy many people no longer have a place to call home and I know that we are very lucky to have our own little place to live.


5. That we live in a country where we have rights and freedom. There are many countries that are under the control of their government and we are blessed to live where we can make choices based on how we believe.

There are many, many more things I am thankful for, but these five top the list this Thanksgiving.

Shop to End SMA

It's that time of year again...time for holiday shopping! If you are a person who does their Christmas shopping online, then please consider using this website:

http://www.shoptoendsma.com/

There are thousands of national retailers to choose from and all retailers donate a portion of your order to SMA research via the Gwendolyn Strong Foundation. It's fast and easy and the best part is-it's free! Just click the link above and shop to your hearts content!

Thank you & Happy shopping!

Tummy Time

Baby Ella is growing up right before our eyes! Last night she was spending some time on her tummy and she lifted her head so high off the ground. I was surprised and amazed being that she's only nine weeks old and also because Nicholas never was able to achieve this milestone. We are so proud of our little munchkin!

Snow Adventure

This morning Jeff and his brother-in-law, Kris, went four wheeling in Jeff's truck at Three Corner Rock which is ten miles Northeast of Skamania. There was 36-40 inches of snow to play in and they had a great time. They only got stuck once and used Jeff's wench to get the truck out. All the photos of snow makes me hope that we will have a white winter this year!

Two Wonderful Kiddos

Can you read Nicholas's shirt? That pretty much sums up who he is to me.
Look at that belly! Boy, does she love to eat!

She fell asleep while playing


In the days since my last post, Nicholas has been feeling so much better!

Thank you to everyone who left heartfelt comments both here and on my facebook page.

I just thought I would share a few photos that I took of the kids this week...the top one I took last night and you can see Nicholas is back to his happy, smiley self. I can't believe he is 2 1/2 years-old today. He is growing and learning on a daily basis and his vocabulary is getting bigger and bigger. We couldn't be more proud of our little guy! I am really looking forward to next week because we don't have much going on, and after the last couple of weeks, it will be a welcome break. I am so excited to spend lots of time with my family and eat yummy food on Thanksgiving!

A Mother's Point of View

I cannot ignore it anymore. I have tried everyday for the past year and a half to ignore it-the fact that my child will most likely leave this Earth before me. The thought of losing my son makes me totally and utterly miserable. I look at him and I have to leave the room because I start crying. No parent should ever have to feel this way. No mother should ever have to live everyday knowing that someday her child will die.

Such is the nature of having a son with a terminal illness. Watching my child get weaker and sicker month by month has finally taken it's toll on me. Since April of this year when Nicholas got bronchitis, he has grown weaker. His wrists are floppy, his knees are contractured, his scoliosis is getting worse, he can no longer eat by mouth, he does not enjoy sitting up as much, he cannot bring his hands to his face, he cannot speak like a typical two and a half-year-old. My happy boy is not so happy all the time. He doesn't smile as much as he used to. He just wants to lie in front of the TV a lot of the time and watch his favorite movies and cartoons.

It breaks my heart.

As a mom, I want the best for my kids. I want them to be happy. I want them to experience life to the utmost. I want to kiss away the hurts, and make everything better. But I cannot make SMA better. I cannot make it go away, and that, is a devastating reality.

My child will never get better. He will never recover. He will always be this way and continue to get worse until he goes to Heaven. Half of the children with SMA die before the age of two. That means that Nicholas has beaten the odds, but it also feels like the clock is ticking and no one knows when time will run out. The only hope I can cling to is that medical researchers will find a cure (quickly) for my child. A cure that may extend his lifespan and allow us to spend many more years with him. But each time he gets sick, each time he starts feeling crummy, I start to wonder if it's the beginning of the end. I begin to plead with God to allow us more time with him. "I will do anything," I say. "Whatever you ask of me, whatever you need from me, I will do, just please give us more time."

The fact is, our son is ill. He is my heart and soul wrapped into one and I cannot imagine a world without him. I hope that I won't have to, I hope that doctors can find a cure for Nicholas and thousands of other children that live with this disease.

I don't write this because I am seeking sympathy or acknowledgement. I write it because it is just how I feel today. I feel sad. I feel alone. I feel afraid. I probably won't feel like this tomorrow because I am a glass half full kind of girl. I am always looking for the silver lining, the sun peaking out of the clouds. But on days like today, I cannot ignore my feelings, I cannot make them go away and my heart just hurts. I walk around with a lump in my throat and tears in my eyes and I wish that life was different. I wish we lived in a world where SMA did not exist. I wish that no parent would have to be told to think about their "child's end of life decisions" as our pulminologist suggested to us last week.

If you are reading this, please take a moment and say a prayer for Nicholas and all people who suffer with Spinal Muscular Atrophy. I know we can use them and we truly do appreciate them.

Ella is Two-Months-Old

Today baby Ella is two-months-old! I can hardly believe it's been eight weeks since she was born. She had her two-month check-up this morning and she now weighs 12 lbs. and is 22 3/4 inches long which means she's in the 80th percentile for both height and weight. She also had to get three immunizations and one oral vaccine and she did not enjoy those one bit. She screamed bloody murder for quite awhile after her shots and Nurse Holly was kind enough to let me breastfeed her in the patient room to help calm her down. She slept a lot this afternoon and spent the early evening playing and is back to her happy little self. She has started smiling more frequently in the past few weeks and makes cooing sounds, both of which are so adorable. She also kicks her legs and swings her arms around a lot and Dr. Thompson (her pediatrician) warned us to not let her be on an elevated surface alone anymore because she will probably start rolling over this month or next. It's so fun to see her grow, and, in many ways, I feel like a new parent all over again since we didn't experience the same physical milestones with Nicholas when he was a baby. It's difficult for me to imagine that in a few months we will have a crawler on our hands and will have to baby-proof our house for the first time.

We love our little girl so very much and are so blessed to be her parents!

Sitting Pretty

Both my kiddos got new chairs! Nicholas got a new Tumble Form chair because he out-grew his old one and Ella got Nicholas's old Bumbo chair. They were so cute sitting together last night.

A Great Brother & Uncle

Nicholas and Ella's Uncle Brett was in town for a few days and finally got to meet his new niece! He came here to move his girlfriend, Lisa, down to Florida to live with him. They are making the cross-country drive as I type this. Ella loved meeting her uncle and Nicholas enjoyed spending time with him, too. We look forward to seeing them again at Christmas!

Lots of love to Brett and Lisa on your new adventure together!

Well That's Settled

Nighty-Night

Tonight Ella is sleeping in her own room. She's six weeks-old and since Nicholas started sleeping in his own room at six weeks, we thought we would do the same for Ella. She's all tucked in listening to lullabies, and so far, sleeping like a baby. Here's to hoping we all get a good night's rest!