Pneumonia - and Joy!

It's been a few months since an update on Vivien and I had a friend recently tell me she needs more pictures so I am endeavoring to fulfill this request and give you all an update.  Here are a few I took on Mothers Day.

 

From the new year through about March our family battled sickness. I don't know what it was about this year but we had stomach bugs and colds that just didn't seem to end. When you have 7 people in the family, no one seems to get it at the same time, so though no one person was sick for the whole 3 months, by the time it was passed on from one person to another it felt like eternity. We didn't all stay home the whole time and life went on for whatever members of the family were not sick. But it took its toll.

I do have a little secret though. I kind of enjoy it when my kids are sick enough to need to stay home. Not because I like to see my kids sick, but because there is something sweet and cozy about everyone being home together, with no place to have to go. I love the nurturing part of caring for sick kids and am not even too bothered by the stomach flu and all the cleaning involved if it means we all get to be home with no outside responsibilities. I don't even mind being sick myself if we are all together and I am well enough to at least care for everyone. And generally, I get sick the least so I am grateful for that. I know. I'm weird. I like a little drama. It's my mom's fault. She made sick drama positive for me. It is actually a gift. A little twisted, but a gift. Let me explain.

My Mom and Dad on their Wedding Day

Growing up, my dad was on dialysis and so we were in and out of the hospital all the time. My mom is amazing. Even though she had the burden of trying to care for me and my sister while at the same time trying to support her husband, she made it positive. When we knew we had to go to the hospital, she made it fun and exciting. We got to pack a little lunch and of course there was the hospital cafeteria where I would get to go pick out taffy. There would be card games and toys and a little blanket for me to sit on and we'd have "picnics" at the hospital. Drama would surround it but it would be more like an exciting adventure than a scary trip to the hospital.

So I have my mom to thank that when my kids get sick or when we have an emergency trip to the hospital with Vivien, it isn't horrible for me. I hate to see her sick, I want her to be well, and I really don't like it when it lasts a long time. It doesn't negate the trauma if something is really serious, but it does make it bearable and less difficult for me emotionally if I know that she is going to be ok, but a trip to the hospital is warranted. Which ended up happening for us as you shall see....

What my mom did has taught me that children are largely influenced by the positivity and lack of fear of a parent. She grew great strength from Jesus during her years of loving and caring for my dad and it translated to us. It doesn't mean that she denied reality with us or didn't tell us when things were difficult for her or that they weren't difficult for that matter. I am well aware of the toll that my dad's needs had on my mom and the pain of his early death in his forties was for all of us. She wanted us to express our emotions and cry and be real.

But I understand from my mom that bad circumstances don't always mean a bad time. She had the ability to turn negative things into adventures, and I still often see life that way because of her influence. Things that other people fear she would turn into jokes and laughter. Life doesn't have to be full of negative drama all the time. She was no helicopter mom fearful of what might happen if.....

My mom still does that with her grandkids too. When real trauma happens, she is right there, totally supportive. She is also very protective when it comes to wrong influences. And when bad things happen, she is always empathetic and values self expression. But she doesn't sweat the small stuff and she teaches us to quickly see the lighthearted side of life. She is genuinely flexible and happy about life most of the time because she chooses to be so. It doesn't mean that she hasn't had a lot of very deep pain or difficult circumstances. I could write a book about what my mom has overcome. But she has learned as Scripture says, "the secret of contentment"

I have a little plaque she gave me that she personalized for me... "A relaxed attitude lengthens a woman's life" Prov 14:30b (TLB) Anyone who knows me understands why I need this. Yeah, I have a wee bit of intensity and passion in my personality. I need this reminder.

At Seattle Childrens

So I remembered to be grateful to my mom when on March 10th, our 15th wedding anniversary, after several days of Vivien running a fever and some low oxygen saturations at night, I brought her in to Seattle Children's Hospital on the advice of our pediatrician , just to get checked her out. While I was there answering a barrage of questions, her sats (oxygen saturations) dropped a bit alarmingly even as she was awake and they decided to admit her.

The day before we went in.

I'd spent the previous day holding her almost the entire day because she was not happy anywhere but in my arms, getting her back thumped hard. She wouldn't nap properly and of course I got nothing done. Todd was working the night before and was supposed to be at co-op all day as this was his teaching unit. There was also an evening event planned that he had scheduled for his co-op class as well. I know, I know - what a way to spend our 15th wedding anniversary - but I decided to forgive him since he IS doing this little thing for me - taking me to Maui in June to celebrate. So I brought her in to the hospital that day and he met me there later.

When they admitted her and found her to have both pneumonia and influenza we were glad to have her there rather than at home. As I've said before, from a medical standpoint I struggle much more with fear of being the one responsible for her care and I am so grateful for Children's and the security that I feel there knowing she was in good hands. I don't mind caring for my kids when I know they are going to be fine, but with Vivien's condition, I am always less comfortable with my own skills. We were also grateful that we caught it fairly early and that there was no serious danger, that it was treatable and we had a plan of attack.

They put her on IV fluids, antibiotics and thankfully, we were out of the hospital in 3 days. The bonus was that Todd and I got to spend our 15th anniversary evening together instead of separate. Viv rested well that evening. They helped her to get more comfortable after a couple of days of her not sleeping well so we ate chocolate and enjoyed our "romantic" evening at the hospital with no kids thanks to the Grandparents. Again, I am thankful to my mom for giving me the ability to see the humor of the situation and to be able to enjoy it, despite the drama.

My Mom's ability to make joy out of negative circumstances and make light of the dreaded enemies - fear, sorrow and shame- really has become a passion of mine. She would always tell me when I was little that my name (which meant myrrh or bitterness) means "bitterness turned to sweet". She would say, "Molly makes sad people happy." I can still hear her saying this to me over and over in my head. It's funny that this little saying truly has shaped my life because it is one of my favorite things to talk about with others. Joy. Joy in Jesus and in the life He has called us to is one of my favorite topics.

There was one point last year  I was sick enough to be in bed, with a bowl all day.  (Love the visual, right?)  It's not often that I get that sick.  It's usually just the kids.  Maggie happened to get it the same day too and thankfully, Todd was home that day.  She and I just stayed in my bed, cosey and watched movies on and off all day.  I tried to make it fun and relaxing despite how I felt and we connected well. Just recently I asked Maggie, "Do you remember when we were sick together? Did you like it?" Her answer, "I loved it!  We were so cosey and we watched (she proceeded to list the movies) and it was so fun to be sick together."   What?.....  This stuff works folks.  I can't make it up.  Relational connection, love and joy make up for the discomfort of emptying your stomach all day.  As parents, we have power in our perspective.

Don't get me wrong.  I believe in grieving and feeling and expressing emotion.  At the same time, I think we can have joy in all things and not sweat the small stuff.

I was having a discussion with my awesome and also philosophical cousin Kevin on Facebook (I love my cousins and we've always been close) the other day that helped shape some of my thoughts. Negative emotions like fear, sorrow or shame are not sinful. They are necessary and good in our emotional maturity. (Thank you Pixar and Inside Out). But they are still negative. If we try to skip the negative emotions and deny them, we are not living in healthy maturity. But once experienced, the ability to return to joy despite the negative emotions is a skill set that I believe God desires for us to learn. It is learned within the context of relationship - both with the Holy Spirit and others. I've said this before and I'll say it again. Jesus doesn't call us so many times in Scripture to joy because he wants to add the burden of "have a good attitude" to our pain. He calls us to joy because He genuinely wants us to experience it. To be able to have true joy that is emotional, not merely a choice, in the midst of difficult circumstances is a huge gift.

Philippians 4:8 is not just positive thinking. It is seeing hope and redemption in everything - even great depths of evil and depths of pain, because of who Jesus is in our lives and the supernatural ability He gives us to be thankful and content in all circumstances. He is faithful. He said himself that the purpose of the words He spoke to His disciples before He went to the cross were that their "joy would be made full" Jn 15:11 1 Jn 1:4   He went to the cross "for the joy set before Him" Heb 12:2. Seeing the redemptive side of difficult events with joy is God's idea, not just trite, happy, positive thinking. And the fact that this is my passion really didn't hit me until recently, when I thought about the little "Molly makes sad people happy" saying. What we speak into our children's lives and future really does matter. One of my favorite things in the world is to help others escape a victim mentality and see in faith the truthful reality of all the GOOD that God has done for them and the joy He has for them. I am grateful for her perspective.

This perspective gives us the ability to look at administering food through a g-tube 5 times a day, changing diapers, getting up at night to turn her, and caring for a person incapable of caring for themselves 24/7, - for what may possibly be many years instead of just the normal two or three that babies and toddlers require - with genuine joy and contentment. I don't want to make light of the fear and pain that I experienced when I first realized how drastically my life would change if Vivien lived. If you had told me two years ago this month that I could be so truly happy with the life that I live right now, I would have never believed it. What I just described above sounded like painful drudgery to me at the time, not to mention added complication hindering me from the things I wanted to do. I am not a natural caregiver. As I've said many times, Todd is a natural. It is his passion. It is why is a paramedic. He actually enjoys it.

But the only explainable answer to why I look at what I am doing right now and feel like it is no big deal (most of the time) is God's grace. His gift of joy. I really do love my life. Yes Vivien is time consuming. Yes I have my moments. But overall I love our crazy bundle of kids. I love Vivien's wide eyes and tiny mouth, her grins and giggles and as I look at the years stretching ahead of me of caring for her, I can truly "smile at the future." There is no other explainable answer but God. His supernatural gift of joy.

Lake Coeur 'd Alene

A week after Vivien came home from the hospital we were scheduled to go for a little spring break trip to Idaho for our family and then to Pomeroy to visit Granny who turned 101 on March 25th. Unfortunately, the sickness continued. We made our trip to Idaho because Maggie was the only one with a fever when we left and we managed to still have a good time on beautiful Lake Coeur'd Alene along with my Mom and Todd's dad and step-mom. But by the weekend when we were supposed to leave for Pomeroy from Idaho to visit Gran, we had 3 kids with fevers including Vivien and my mom was starting to get stuffed up too. We had no desire to give Granny and all the cousins what we had and regretfully had to cancel. We are hoping to make another trip out in October of this year. Thankfully, this fever didn't require going back to the hospital for Viv and she was strong enough to battle it on her own. We had actually gotten a prescription for another round of antibiotics but waited just a couple more days before we gave them to her and ended up not needing them.

I will tell you that after 3 months of various illnesses, my patience was waning, my cheerful "I'm ok with sickness" was fading and my Mom's "relaxed attitude about life" philosophy was starting to lose its strength and attractiveness. We started really crying out to God for wisdom on how to stop the cycle. Thankfully hope springs anew in SPRING and come April we were all well and have been pretty good since. (I wrote this yesterday and this morning Silas and Iva started sniffling of course. God has a sense of humor.) Sometimes God changes our attitude, and sometimes He changes our circumstances. I definitely prefer both. The kids have been loving the unusually warm (for Seattle) weather and are outside all the time. Spring is Todd's favorite and he gets lost in yard projects, with Mom Merry as his co-hort and co-conspirator in plotting and planting. They share a love for God's creation and beautiful spaces.

During the time Vivien was sick we weren't doing a whole lot of PT with her but since then she has made some good progress. She has multiple therapists and though some of the goals we have set for her haven't been achieved, we can celebrate the milestones she is making. Here she is learning how to "prop" sit.

We have had both joys and sorrows in the trisomy community. A joy is that recently a mommy of one of Vivien's friends messaged me for measurements. She sent Viv the sweetest little dress that matches her daughter Lilliana and several other adorable girls with T-18. She sent us this picture of the girls and here is Viv in her matching dress as well.

This summer we have the Support Organization for Trisomy (S.O.F.T) conference coming up. It is held all over the country every summer and this year it happens to be in Tacoma so we are looking forward to going. We will be meeting people that we have only met online and looking forward to creating new friendships, learning more in workshops and just the general support that the conference will bring.

The Carlton Family and sweet Karis

At the same time there are sorrows as well. A lovely family, the Carltons, became pregnant this year with their 4th child, a sweet little girl named Karis. They found out she had T-18 and I was able to visit with their family both when Karis was in the womb, and after she was born as well. Our kids enjoyed getting to know theirs. Karis lived 89 days and passed away on Mothers' Day. We will be going to her service in June and are looking forward both to grieving and celebrating her life with their beautiful family. We are continually reminded of the frailty of Vivien's life and the joy of it as well when we meet babies like Karis.

We are looking forward to a fun summer with the family, with lots of trips planned. At the same time Todd and I have been reading a lot of Francis Chan, Nik Ripkin and Jen Hatmaker, all of whom can be dangerous for complacency or a general feeling of gratifying self when it comes to the Christian life. Talk about passion and care for the world and those outside of our safe little family and community. Both Todd and I feel like the Holy Spirit is putting in our hearts a "holy discontent" for a life of comfortability and security. We are excited about some opportunities we will be taking to step beyond our borders and comfort zone and do some new things that God is calling us to. We want to bring our kids with us, as they are mature enough and able, into a world of looking beyond our own needs. We are grateful that Vivien is more stabilized and looking forward to what God has for us ministry wise. Hopefully we can share more about this soon, but in the meantime, we are asking Him questions and are trying to delight ourselves in the life He has given us and the calling he has put before us.

Thank you for making it through this long update, my philosophical ramblings, your prayers for Viv, especially when she was in the hospital and for your continued love and support!

Mothers Day 2016