Sunday, January 23, 2011

This Week's Update

This has been a fine week. Let's see... Jonah has a cold. Monday night he spent the night in the hospital because he had water in his lungs and the doc wanted to watch him. He came home Tuesday. He still has water in his lungs but is on a serious antibiotic so it won't turn to pneumonia. We've seen his eye doctor 3 times this week and his eye is slowly improving. They want to see him everyday but I feel that's a little excessive. He also had an upper GI study done Thursday and is now officially ready for his G-tube surgery. That's scheduled for February 16th. Yay!

That's all the business part of it. Here are the good parts. I love spending time with Jonah. He is so sweet and content and pure and innocent. I am still discovering his personality. Besides seeing some of his obvious traits, it takes more time to really see him because he can't express himself very well. One thing I really love about him is that he is here. I imagine in Heaven before he came, he was told this body would have lots of limitations and his time would be short. And because we all have our agency, I imagine he could've said no. But he is here. He is ours. I love him for it.

We took Jonah to *basketball games* on Saturday and church on Sunday. It feels so WONDERFUL to have all our family together. We have kept him home and away from 'germs' but he got a cold anyway and ended up in the hospital, so now we figure he is here to be with us, and be with us he shall. Life is a lot more fun when we are all together.

While driving to Salt Lake for appointments, I have lots of time to reflect on life. During these reflections I see the Lord's hand and am made aware of the many people that are sharing in Jonah's journey. We have had so many people offer to watch kids, give rides, bring meals, bring treats, bring gifts, and share thoughts of love and encouragement. None of these sacrifices for our family go unnoticed or unappreciated. I need to say thank you again. THANK YOU! Jonah's influence is connecting people through love. It is quite remarkable. It is quite humbling.

Here's a "Mom" note. The good news is that I am still sane. It is largely due to the goodness of others, as I have mentioned above, and also, with much thanks to my mother-in-law. While Nana and Grampa lived in New Zealand they cared for a special needs boy until he passed so they understand Jonah in a way that only parents who have lived through it can. Nana has been coming over in the mornings and tending Jonah and Jaya so I can go exercise and do errands. She does the things that need to be done, be it laundry, or cleaning, or cooking. Most importantly, she holds and loves Jonah. My kids spend a lot of time with Nana and I am comforted to see Jaya become more and more independent and happy instead of clingy and whiny. I have to admit that some mornings I am torn... I feel like these are my children and I should be able to take care of them. But I recognize Nana's love for her Grandchildren and me and I remind myself that I can't do it alone-I don't have to do it alone- and I need to accept the blessings Heavenly Father sends. So I thoroughly enjoy myself.:) The half-empty cup seems to be half-full, or even overflowing, when I return home. Thank you, Nana.

*I have to share the 'miracle' that happened yesterday for Cousin Danja. She and Tahlia play in the same basketball league, she plays for Mountain View's team. Yesterday, Tahlia's Springville team only had 4 players show up and Danja had played the game before Tahlia's, so we asked her to be our 5th player. It was a tough game. We had the lead the whole game, and then with about 2 minutes left the other team went up by one point. With about 35 seconds left, Tahlia dribbled down the court, got double teamed, and passed to Danja on the block. Danja turned and shot. She scored the game winner!! It was the first basket she has made all season. It was so fun to see how excited Danja was, and how excited Tahlia was for her. I love cousins! I am so glad we could all be there to share in it.*

**One other thing that made me smile this week: Mariah's very persuasive "Top Ten Reasons I Need a Cell Phone" list. I just have to share #8. "I will feel very mature when I get a phone otherwise I just feel like a kid on a 3 wheeler bike! Sad, huh?" Ahhh, who knew 13 would be SO FUN? Love you Ry!**

Sunday, January 16, 2011


How do I start this pleasantly...

Yesterday I started crying just after lunch and stopped about midnight when I crawled into bed. Today my eyes and face are puffy and my head still hurts. But everything is ok. It all started Thursday when we went to see the eye doc. There was a small dry spot on Jonah's left eye ball. The doc said he needed 2 medications to avoid infection, because if it gets infected, Jonah could lose his eye.

Friday his eye got worse, and yesterday it was even worse. Instead of being clear, the blue of his eye is cloudy and the white of his eye is red. So I called the opthamologist on call and he told me come in. After approximately 2 hours of jumping through proper hoops for insurance purposes, we were in the ER at Primary Children's. Jonah had a fever and his breathing was irregular. The doc told me that she wanted to do blood work, a urinalysis, and a spinal tap to check for serious illness because babies that young shouldn't have fevers. I told them (like they couldn't see it) that he had an eye infection, and his fever was probably due to that. She told me that yes, that was probable, but with an immune system like Jonah's, an eye infection could quickly spread to his blood, or his brain, or his shunt... My sweet Jonah that has been so healthy suddenly went from stable to life-threatening illness in 30 seconds.

At that moment, I was holding Jonah and he was asleep with his eyes open. He had some florescent drops put in his eye earlier. His eye looked dry and gritty and cloudy and perfectly still. The same eyes that my other sons had, holding them after they had just passed away. Suddenly death was too real and too close. Looking at Jonah's other crystal clear beautiful blue eye, I could plainly see life in his eye. He was still with me. But I have held my sweet babies after they passed. It was too real. It was too close. And sitting in the ER with the bad news docs sucked the hope right out of me. So I completely fell apart. Why can't those 'falling apart' moments happen in private? I am not a crier. I don't cry. In fact I only remember 2 other times in my life crying like yesterday.

With my other boys, I have known when it was their time. In my moment of fear, I couldn't feel anything. So I let them take Jonah's blood and put in an IV. The opthamolgist scraped Jonah's eye-yes scraped his eye- for cultures. His blood counts came back normal-ish. I decided he'd had enough for the day. We battled the pharmacy and finally rolled home about 10 pm. Still crying.

A few weeks ago Rob and I were saying night prayers. Rob was expressing gratitude for the time we have enjoyed with Jonah and how well he is doing. Then he said, "we know that Jonah has other work to do". And the Spirit told me it was true. Jonah has other work to do. His mom doesn't very much like hearing about it. But it gave me a new perspective that I hadn't considered before. He is a blessing to us, loving us and allowing us to love him, until his precious time is up. His body is a blessing. And death, as horrible and lonely as it is, is also beautiful and merciful. It will surely come. So sometimes its ok to take off the brave face and cry. Preferably in private.

My day wouldn't be complete if I didn't share the tender mercy. As Jonah's and my day began, at about 1130am, we waited at the Moran Eye Center to see a doc. I met an older man who was a little rugged and rough who brought his friend in because he got a piece of metal in his eye while welding. We made small talk, he kept me smiling. When it was Jonah's turn to go back, the man asked me if my insurance would cover Jonah's appt. I was in the wrong building for my insurance, so I answered that I hoped so. He opened his wallet and gave a $100 bill. Who does that? WHO DOES THAT? I certainly can't dry my tears with a $100 bill, and $100 won't heal my hurt, but someone somewhere knew it would be a rough day and wanted me to feel the love. I am still feeling the love.

I am grateful for the love of a stranger.

I need to remember to be somebody else's stranger.

Tuesday, January 11, 2011

Jaya is Learning to SHARE!

Today, for craziness, I decided to go play basketball. I crave the exercise and miss my friends. Plus everyone wants to meet Jonah! So Jonah, Jaya, and I packed up and headed to the gym to meet the ladies. We have been playing for years. Anyway things were great until Jonah's oxygen monitor started beeping. When I got to him I realized that sweet Jaya was taking great care of Jonah and sharing her snacks with him. I pulled a piece of honey buzzer cereal out of his mouth and did a finger sweep. My pinky could feel one more piece further down his throat. I turned him upside down and gave a few wacks to his back and he started crying, so I knew he could breath. I did a few more finger sweeps and couldn't get that other piece out, in fact I was pushing it further down. It felt like a small broken piece, but it was definately down there. His oxygen was still really low so I hooked up his oxygen (with lots of helpful hands from teammates) and cranked it up and his oxygen level came up. I decided I'd have to take him to the emergency room to have them remove the darn honey buzzer. And while we were fussing over Jonah giving him a second to breath his oxygen, he spit the other cereal out. One whole full-sized, now soggy, honey buzzer. My boy who doesn't have a gag reflex and a very weak cough somehow managed to get that out of his throat. Nice work, Jonah!! I was one very grateful (and proud!!) Mom. Jaya now understands that there are no snacks for Jonah.

It makes me wonder how I have survived motherhood this long without an oxygen tank and monitor. I was tempted to hook myself up to Jonah's tank! Thanks to all my friends for not freaking out and helping me deal with the craziness.

Tomorrow Jonah sees the vision doc and has his brain tested to see if he can process sight. I am excited about this one. We want to understand what he's up to so we can help him reach his potential. On Thursday we see the g-tube surgeon. Also excited about that one because Jonah continues to reflux when he eats and has to have oxygen. Its getting worse. But Jonah battles through, spitting up and even swallowing. He has a lot going for him. It makes me excited about life for him!

Wednesday, January 5, 2011


Today for fun I visited Josiah's website. I was struck by the contrast of Jonah's and Josiah's lives. Jonah is a month old and we haven't had a single crisis moment yet. Josiah's life was one big crisis sprinkled with a few beautiful moments of profound peace. I cried as I read the entries from the hard days. Bitter-sweet tears. So grateful. So grateful to be here and not there. So grateful for Josiah and the time we had with him. So grateful for Jonah's strength and how well he is doing. I am also aware that could change at any moment. Its a good reminder that life is precious and time is a gift.

Josiah's website is if you want to see my other angel.:)

What's New?

Do you notice any changes in Jonah? I'll give you a hint, there are 3.

First, he HAS NO OXYGEN CORDS ON HIS FACE! This is today's goal, to keep the oxygen off. I am monitoring him to see how he does and his home health nurse is coming later. Isn't he a beautiful shade of pink? We think Jonah can do it all by his big self.

Second, he is indeed showing his battle wounds. The wraps came off today. Actually, Jaya pulled his bandaid off his head yesterday and freaked out because of Jonah's "OWIE!!". She was crying and screaming about it. The empathy a 21 month old can feel is amazing. But then who better understands an owie than one so young who is constantly bumping and bruising?

And lastly, can you see that double chin of his? He is putting on weight. We need him a little bigger and stronger before we try the g-tube surgery. Doesn't he look great?
Yesterday Jonah, Jaya and I spent the ENTIRE day in Salt Lake for eye appointments. What we learned is that Jonah has a cataract that completely covers his right eye. The doc explained that in a normal child he would remove the cataract immediately or else the child would lose vision completely in that eye. With Jonah, we need to test whether or not his brain is processing sight before we do an unnecessary surgery. So next week Jonah has another couple eye appointments for testing things. Jonah responds to light, so I know he sees some. I don't know if the benefits of the surgery outweigh the risks. Hopefully we'll figure that out next week. I need a few good books as I hurry up and wait at these appts. Any recommendations?

Saturday, January 1, 2011

A New Year

While the older kids spent New Year's Eve with friends Jaya stayed home to help Mom and Dad with Jonah. Jaya snugged Jonah while we watched a movie and then she fell asleep. Jaya loves her baby. Jonah loves his Jaya.
Jonah made it home Thursday evening from his surgery. He is doing well. Happy New Year!