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| Smiles! |
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| Pensive Viv |
Her weight gain continues to be good and she is nearing 11 ½ lbs. We work with our wonderful nutritionist from Children’s who is helping us put Vivien on bolus feeds (every 3 hrs) rather than continuous which means she isn’t attached to a pole all day. She is still getting a smaller continuous feed at night although we may change that eventually as well. We are so grateful that she is falling into a fairly routine sleep schedule and sleeping around 9-10 hours at night with two short naps during the day. If she wakes up she generally goes back to sleep quickly. We are trying super consistent with her sleep times.
A couple of weeks ago we took her out for her first walk at Gene Coulon Park and found out from friends afterwards that most babies with T-18 have a really hard time with bright sunlight. So we found her some baby shades! Now she's cool.
The most recent setback has been a nasty cold. Vivien has had a couple small colds in her short life, but her oxygen saturations have been fine through them and though she’s been stuffy it hasn’t been a problem. With this cold her saturations have definitely dropped at night, to a degree that we were worried with her resting heart rate being quite a bit higher than normal. Thankfully, her pediatrician has given us a nebulizer machine and she is getting breathing treatments 3 times a day.
This has helped, because her sats were definitely better the last two nights and her heart rate wasn’t as high. She is still badly stuffed up and congested, but the treatments – and the prayers! – are obviously helping. It is not alarming or dangerous, but just something that we are hoping goes away soon. We know lots of you on Facbook have been praying for her and we thank you!
Today also marks our 14th wedding anniversary. I truly love being married to my best friend. March is a crazy month for us so we carved out two days a couple of weeks ago and planned a stay-cation for an early anniversary celebration. The Grandparents took the kids and Grandma Merry stayed with Vivien for a couple of 3 hour segments, enabling us to hike Tiger Mountain and watch the paragliders take off as well as go out to dinner. It felt like a foreign experience to have some alone time together and to talk over dinner uninterrupted. We felt very blessed.
We are working on continuing to find our new normal and in a few weeks we are going to take our first trip as a family with Vivien to drive 5 hrs to Eastern Washington to visit all our relatives because my Granny Melquist is turning 100! We are looking forward to Vivien meeting Gran and the rest of the family and trying not to be worried about the trip. Todd and I have always said that when you travel with children – it is a trip. When you travel alone – it is a vacation. This is definitely a trip not a vacation, and I am trying not to be anxious about the packing, the car ride, figuring out how to give Vivien her feeds, make sure I continue to pump, keep the kids at least semi-happy and make it through without going crazy. I have been praying a lot about it. Traveling with just the 4 kids usually requires starting to pack a week in advance, and bringing Vivien ups the ante quite a bit. We know it will be worth it and are looking forward to seeing everyone.
If you take the last month since Vivien has been home I can honestly say that though it is busy, I have felt generally happy and content with our new life, despite the work. I am enjoying her smiles and kissing her soft cheeks and tracking her little milestones. I have been amazed by how much I’ve felt God’s grace and joy in my life. I love being home more with the kids and though it is crazy at times, I know that God has given me a beautiful life.
But we all have our moments and this past week has been a bit of a struggle for me. I have been doing a lot of praying lately and fighting some discouragement and discontentment. I have been talking to God about contentment, joy, and peace on the one hand, and comparison, a victim mentality and frustration on the other. It is easy for any of us to see ourselves as a victim of circumstances. To think that because of what life throws at us, happiness, contentment and peace are an impossibility. I have been struggling against temptation to believe some lies that what I am going through is harder than what other people are going through, and that I’ve been given the short end of the stick. I remember how hard I thought life was before Vivien with “only” four kids and I laugh at my old self and how easy I had it.
If I start to compare – I will always find people who I think have it easier than me. If someone points out the good things – it’s so easy to assume that they don’t understand. I have been so tempted to complain and to focus on the negative. Shortly after we came home with Vivien I felt like I was doing ok. I was still having joy and enjoying my life. But recently – with her getting sick and the addition of the nebulizer treatments and Todd going back to work and having to pump longer to keep up with supply and demand and 3 different physical therapy regimens for her – not even counting all that has to be done to keep the rest of the household going and take care of 4 other kids - I have felt slightly panicky that I will never get to do what I want to do, as if Jesus has consigned me to a life of constant demand where I will never get a break. It feels like so much of life requires doing 2 or 3 things at the same time. When I only have one "urgent" thing happening it feels like a luxury. Driving alone in the car - anywhere - is a vacation. I know that lots of mamas feel trapped at times, and as if they don’t have any life of their own – but mine is so much worse than everyone else’s right? I deserve to complain, right!?
The truth is – Jesus has given me everything I need for my present happiness. He loves me. He sees what I am going through. He has given me so much help and support. The truth is that I don’t need to fear. The truth is that even if I didn’t get a break (which I will and do) He can still give me joy and peace. The truth is Jesus has given me enough time in the day to do what needs to be done. Whatever doesn't get done I can trust Him with. I need a change of belief, not just a change of circumstances. I need to see the truth instead of the lies. I need to believe in my heart that Jesus truly loves me and is caring for me.
Comparison never works. I will always find someone with more or less difficult circumstances than mine. While I may struggle with feeling like I don’t have one second of time to call my own and like a hamster on a wheel, there may be people looking at me, who have lost their babies or whose babies are less healthy and thinking “she has it so good.” Whatever difficult circumstances you may be in, it is easy to think “but my circumstances are different. Mine really are worse than others because______” fill in the blank. Everyone has their own private struggle and pain.
But here’s where the rubber meets the road. It’s not about circumstances. It’s about our hearts. You see – there is not a person on earth who is in the same place as you. There may be some who have similar but circumstances, but I may have a situation that comes along that I handle fine and it truly isn’t painful or difficult for me. Then you go through something similar and it’s so painful for you, it’s hard to function. I may look at you “that’s not so bad” about your difficulties because it wouldn’t bother me. But then something comes along for me that completely throws me for a loop. I feel like my life has ended and I am embarrassed by how it effects me. Everyone has something that will knock them off balance spiritually and emotionally. The severity and the difficulty of a situation will affect each person differently emotionally. So there is no way to compare and think you are worse off or better off than someone else. You may see circumstantially what is going on in someone’s life – but you don’t know what’s going on in their hearts.
In my desire to complain and feel sorry for myself this week, I was asking God, “why do I feel such a need for people to understand what I’m going through?” And why did He make it so that no one can every fully understand someone else’s difficulty? I felt like he spoke to me that while we may sometimes receive support and understanding from others - He has crafted life in a way that He is the only one who fully understands.
Jesus understands. Jesus sees. And He is the one who can truly make it better – not just outwardly – but inwardly. We have the ability to have a relationship with a Person who sees it all, understands it all and loves us more than a human being ever could. We desire to be understood and loved. And that desire is met in Him. He created us with that craving. And then He fulfills it! How beautiful is that?
A heart of comparison is believes that God loves others more than me. The heart of comparison is a belief that He doesn’t want me to be happy. It is a heart of unbelief in His goodness and grace in my life.
I do believe that Jesus wants us to be happy. But it’s not a happiness found in whether our circumstances are good or not. I have often heard people say that Jesus cares more about your holiness than your happiness and I disagree. I believe that He cares about both, perhaps equally, according to Scripture. (I wrote about this here.) He allows difficult circumstances which help our character – yes. But if He didn’t want us to be happy, why did he tell us so many times to rejoice? Because he wanted to make life harder on us?
I was talking to Todd about our kids the other day. We have awesome kids who work hard, love Jesus, and are growing in him. But one of their struggles recently has been missing the good and beautiful and amazing things that they have in their life, or get to do, and focusing on how difficult the chores are, or the toy or whatever it might be that they don’t have. There are moments when their focus is on the negative and they miss all the really good things they have been given. But it dawned on me that I wasn’t just frustrated with their attitudes. I was feeling sorry for them because their perspective clouded their happiness. They have so much that they could be happy about – but in those moments they can be blind to it. I hate seeing them unhappy but I also know that unless their perspective on life gets adjusted, they will stay unhappy no matter how many toys they are given, or fun things they do. We are working on this together. I look at their lives and think about how blessed they are and want them to see what Jesus has done for them. I truly want them to be happy and it makes me sad when they aren’t, especially when it is because of their focus. Maybe this is God’s heart for us. When He says to “rejoice” it is not just because He is adding a burden to our backs – but He truly wants us to be happy.
And then, in looking at my kids struggle, I have to ask myself if I am doing the same thing. Maybe that is why it is a temptation for them. This isn't just about the power of positive thinking, although according to Phil 4:8 – there is great wisdom in positive thinking and gratefulness. I keep reminding them (and myself) that my happiness is not dependent on what I am doing. I can ask Jesus for more of Himself. I pray with them that Jesus would help them to have joy and grace to do their chores and enjoy them, with a good attitude. And often times – the result is that they are much happier. He actually gives it to them when we ask for it together. I sometimes get amazed at their childlike faith in His ability to make them happy – and the change I see in them when He does it. We as adults need to capture that belief.
I know that that joy and peace and rest is found in my relationship with Him and that He is the only one who can produce this fruit of joy. He has proven this to me over and over. My happiness rests in a belief in Him and his love for me. Like Vivien - I can rest in His love and be content with His smiles at me.
He may desire our happiness so much –that He leaves us in a difficult situation just a little longer – because He wants to help us to be both stronger and happier. It gives us a chance to see that a change of situation isn't always where our happiness is found. Sometimes He does answer our prayers by changing our circumstances. And that is awesome. I much prefer that quite honestly. And I think He wants to do this more often than we realize. But there are times when He doesn't answer that way. But the more we see that our happiness is found in Him – the stronger we will be to face whatever comes and like Paul – find the secret of being content in all circumstances. (Phil 4:11) And we will be happier in life as we learn this.
My heart that struggles with complaining and comparison needs to repent . Not just of complaint and comparison, but of unbelief. Because that is the real issue. When I give in to feeling sorry for myself, seeing myself as a victim and fall into comparison, I am really struggling with the belief that Jesus is not doing what is best for me, that He is not enough and that He really doesn't love me like I think he should.
Resting in Jesus love means believing that He sees what I am going through, He understands, He gives me grace – not just to bear it or get through it – but to actually have joy, peace, contentment and all the other fruits of His Spirit in the midst of it. It’s one thing to buckle down, work hard and take care of your responsibilities. But that isn’t “good fruit”. Good fruit comes from His Spirit and from resting in knowing that the real work as already been done by Jesus, and letting His Spirit bear fruit in my life. The fruits of the Spirit are results not actions. Jesus does want me to have joy in life. And I am thankful that He is reminding me of this through Vivien, through my kids and through His love for me.
A few minutes after I wrote the paragraphs above, I heard the news that Vivien’s sweet little friend-who-she-hasn’t-even met - Noah Nicholas Armstrong passed away yesterday morning. We would appreciate your prayers for his family. Noah had full T-18, lived in Spanaway, was a month older than Vivien and their heart surgeries at Children's Hospital were just a few days apart. We have been following Noah since shortly after he was born. He had had some setbacks but was doing fairly well and his passing was a bit sudden. We have shed tears here and he will be greatly missed and is a reminder that each person has their own difficult circumstances. We need to pray for each other, build each other up, weep with those who weep and rejoice with those who rejoice and remember the One who truly sees and understands through it all. He is the one who gives us grace and strength to look at what life brings and rest in His love for us – no matter what.
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| Fashionista Baby |
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| Sunggles |
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| Tiger Mountain |
We are working on continuing to find our new normal and in a few weeks we are going to take our first trip as a family with Vivien to drive 5 hrs to Eastern Washington to visit all our relatives because my Granny Melquist is turning 100! We are looking forward to Vivien meeting Gran and the rest of the family and trying not to be worried about the trip. Todd and I have always said that when you travel with children – it is a trip. When you travel alone – it is a vacation. This is definitely a trip not a vacation, and I am trying not to be anxious about the packing, the car ride, figuring out how to give Vivien her feeds, make sure I continue to pump, keep the kids at least semi-happy and make it through without going crazy. I have been praying a lot about it. Traveling with just the 4 kids usually requires starting to pack a week in advance, and bringing Vivien ups the ante quite a bit. We know it will be worth it and are looking forward to seeing everyone.
If you take the last month since Vivien has been home I can honestly say that though it is busy, I have felt generally happy and content with our new life, despite the work. I am enjoying her smiles and kissing her soft cheeks and tracking her little milestones. I have been amazed by how much I’ve felt God’s grace and joy in my life. I love being home more with the kids and though it is crazy at times, I know that God has given me a beautiful life.
But we all have our moments and this past week has been a bit of a struggle for me. I have been doing a lot of praying lately and fighting some discouragement and discontentment. I have been talking to God about contentment, joy, and peace on the one hand, and comparison, a victim mentality and frustration on the other. It is easy for any of us to see ourselves as a victim of circumstances. To think that because of what life throws at us, happiness, contentment and peace are an impossibility. I have been struggling against temptation to believe some lies that what I am going through is harder than what other people are going through, and that I’ve been given the short end of the stick. I remember how hard I thought life was before Vivien with “only” four kids and I laugh at my old self and how easy I had it.
If I start to compare – I will always find people who I think have it easier than me. If someone points out the good things – it’s so easy to assume that they don’t understand. I have been so tempted to complain and to focus on the negative. Shortly after we came home with Vivien I felt like I was doing ok. I was still having joy and enjoying my life. But recently – with her getting sick and the addition of the nebulizer treatments and Todd going back to work and having to pump longer to keep up with supply and demand and 3 different physical therapy regimens for her – not even counting all that has to be done to keep the rest of the household going and take care of 4 other kids - I have felt slightly panicky that I will never get to do what I want to do, as if Jesus has consigned me to a life of constant demand where I will never get a break. It feels like so much of life requires doing 2 or 3 things at the same time. When I only have one "urgent" thing happening it feels like a luxury. Driving alone in the car - anywhere - is a vacation. I know that lots of mamas feel trapped at times, and as if they don’t have any life of their own – but mine is so much worse than everyone else’s right? I deserve to complain, right!?
The truth is – Jesus has given me everything I need for my present happiness. He loves me. He sees what I am going through. He has given me so much help and support. The truth is that I don’t need to fear. The truth is that even if I didn’t get a break (which I will and do) He can still give me joy and peace. The truth is Jesus has given me enough time in the day to do what needs to be done. Whatever doesn't get done I can trust Him with. I need a change of belief, not just a change of circumstances. I need to see the truth instead of the lies. I need to believe in my heart that Jesus truly loves me and is caring for me.
Comparison never works. I will always find someone with more or less difficult circumstances than mine. While I may struggle with feeling like I don’t have one second of time to call my own and like a hamster on a wheel, there may be people looking at me, who have lost their babies or whose babies are less healthy and thinking “she has it so good.” Whatever difficult circumstances you may be in, it is easy to think “but my circumstances are different. Mine really are worse than others because______” fill in the blank. Everyone has their own private struggle and pain.
But here’s where the rubber meets the road. It’s not about circumstances. It’s about our hearts. You see – there is not a person on earth who is in the same place as you. There may be some who have similar but circumstances, but I may have a situation that comes along that I handle fine and it truly isn’t painful or difficult for me. Then you go through something similar and it’s so painful for you, it’s hard to function. I may look at you “that’s not so bad” about your difficulties because it wouldn’t bother me. But then something comes along for me that completely throws me for a loop. I feel like my life has ended and I am embarrassed by how it effects me. Everyone has something that will knock them off balance spiritually and emotionally. The severity and the difficulty of a situation will affect each person differently emotionally. So there is no way to compare and think you are worse off or better off than someone else. You may see circumstantially what is going on in someone’s life – but you don’t know what’s going on in their hearts.
In my desire to complain and feel sorry for myself this week, I was asking God, “why do I feel such a need for people to understand what I’m going through?” And why did He make it so that no one can every fully understand someone else’s difficulty? I felt like he spoke to me that while we may sometimes receive support and understanding from others - He has crafted life in a way that He is the only one who fully understands.
Jesus understands. Jesus sees. And He is the one who can truly make it better – not just outwardly – but inwardly. We have the ability to have a relationship with a Person who sees it all, understands it all and loves us more than a human being ever could. We desire to be understood and loved. And that desire is met in Him. He created us with that craving. And then He fulfills it! How beautiful is that?
A heart of comparison is believes that God loves others more than me. The heart of comparison is a belief that He doesn’t want me to be happy. It is a heart of unbelief in His goodness and grace in my life.
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| Making new friends! |
I was talking to Todd about our kids the other day. We have awesome kids who work hard, love Jesus, and are growing in him. But one of their struggles recently has been missing the good and beautiful and amazing things that they have in their life, or get to do, and focusing on how difficult the chores are, or the toy or whatever it might be that they don’t have. There are moments when their focus is on the negative and they miss all the really good things they have been given. But it dawned on me that I wasn’t just frustrated with their attitudes. I was feeling sorry for them because their perspective clouded their happiness. They have so much that they could be happy about – but in those moments they can be blind to it. I hate seeing them unhappy but I also know that unless their perspective on life gets adjusted, they will stay unhappy no matter how many toys they are given, or fun things they do. We are working on this together. I look at their lives and think about how blessed they are and want them to see what Jesus has done for them. I truly want them to be happy and it makes me sad when they aren’t, especially when it is because of their focus. Maybe this is God’s heart for us. When He says to “rejoice” it is not just because He is adding a burden to our backs – but He truly wants us to be happy.
And then, in looking at my kids struggle, I have to ask myself if I am doing the same thing. Maybe that is why it is a temptation for them. This isn't just about the power of positive thinking, although according to Phil 4:8 – there is great wisdom in positive thinking and gratefulness. I keep reminding them (and myself) that my happiness is not dependent on what I am doing. I can ask Jesus for more of Himself. I pray with them that Jesus would help them to have joy and grace to do their chores and enjoy them, with a good attitude. And often times – the result is that they are much happier. He actually gives it to them when we ask for it together. I sometimes get amazed at their childlike faith in His ability to make them happy – and the change I see in them when He does it. We as adults need to capture that belief.
I know that that joy and peace and rest is found in my relationship with Him and that He is the only one who can produce this fruit of joy. He has proven this to me over and over. My happiness rests in a belief in Him and his love for me. Like Vivien - I can rest in His love and be content with His smiles at me.
He may desire our happiness so much –that He leaves us in a difficult situation just a little longer – because He wants to help us to be both stronger and happier. It gives us a chance to see that a change of situation isn't always where our happiness is found. Sometimes He does answer our prayers by changing our circumstances. And that is awesome. I much prefer that quite honestly. And I think He wants to do this more often than we realize. But there are times when He doesn't answer that way. But the more we see that our happiness is found in Him – the stronger we will be to face whatever comes and like Paul – find the secret of being content in all circumstances. (Phil 4:11) And we will be happier in life as we learn this.
My heart that struggles with complaining and comparison needs to repent . Not just of complaint and comparison, but of unbelief. Because that is the real issue. When I give in to feeling sorry for myself, seeing myself as a victim and fall into comparison, I am really struggling with the belief that Jesus is not doing what is best for me, that He is not enough and that He really doesn't love me like I think he should.
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| Bathtime |
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| Noah |
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