The Value, Beauty and Impact of A Baby's Life - and Vivien's First Road Trip!

Thank you so much for praying for Vivien. We continue to be amazed by how her little body is handling things. Her cold lasted about a week and a half and we were able to discontinue the nebulizer. Again, we are thanking God for her immune system, which seems to be working well. This is such a huge blessing, especially since she has four siblings who are very active and good little share-rs of germs. We are grateful that though she has had a couple colds, she has come out on the other side well. We are planning on taking her to our church for the first time either on Palm Sunday or Easter.

Personally, I am feeling a bit like the clouds have parted again and I can see some sun in the distance. Just being able to discontinue the nebulizer has been a relief and added at least an hour of time to my day. We know in September when I stop pumping, it will free up somewhere around 20 hours a week! I am still having "moments" (if you've seen” Mom's Night Out” you know what I'm talking about), but overall I am feeling more hopeful.

One experience we had lately has again made me grateful. It caused us to remember that however short a person's life is on earth, they can make a lasting impact, no matter how small they are. Todd, Vivien and I recently got to attend the service for Noah (link). We were so blessed by the service, by Noah's parents and by his small life. He reminded us of the importance of both loving and being loved, which Noah did well.

Noah's mommy, Laura and I had been I contact shortly after Vivien and Noah were born, about a month apart. We'd met on a T-18 Facebook page and when we realized they were local we developed an online friendship. Noah and Vivien had surgery the same week at Children's and though it didn't work out to meet, we texted and followed one another on FB.

When Noah passed away a couple weeks ago, it was a surprise to all. I felt a kinship for Vivien and Noah-almost as if Noah was her brother - and so wanted to go to his service, despite two other things our family had going on that day. We were so glad we were able to make it. Seeing the strength and faith of Noah's parents was a huge blessing to us.

Watching Pete and Laura interact with one another and those who came to the service was beautiful. From their eulogies and letters to Noah, read through their tears, it was obvious they loved their son deeply, yet at the same time, I kept thinking of a phrase from I Thess 4:13 where Scripture says that we do not grieve as those who have no hope. They were sincere, heartfelt and truthful about their grief for Noah but they had this amazing presence, joy and gratefulness in celebrating his life. There was hope there. His death affected them greatly, but they were not completely devastated by it. There was no despair or hint of bitterness toward God. Their hope was based on the truth of heaven and on who Jesus is.

I was recently reading "Life Is ___" by Judah Smith and he reminds us, "You've probably faced firsthand the frailty of life. Maybe you're going through terrible loss even now.... What are we going to do with the frailty of life?... Optimism? The power of the human spirit? Positive thinking and hard work and the human spirit but they do not change the unpredictability of our existence. How about faith?... Can faith and trust and prayer and religion and good works save us from life's frailty? Again the answer is no. In themselves, these things have no power. Faith must be placed in something greater than itself. Don't put your faith in your faith or your trust in your trust. It sounds spiritual and religious but it's nothing more than empty humanism. Faith is not to be admired. It is not a merit badge to show off.  Faith  is meant to be plunged into the abyss and the darkness of life's uncertainty until it anchors in a sure foundation and a solid Savior. Our faith is in Jesus. None of these things are a guarantee of security or peace. Our faith is in a Person.... What is our ultimate source of sanity, security and peace? Jesus is our only hope."

Many say that losing a child is a pain like no other in life. Yet Pete and Laura had this wonderful grasp of the reality of where Noah is right now and how truly happy he is. We mourn for our loss of Noah. But we don't mourn for Noah himself, knowing that he is the happiest he has ever been and ever will be, enjoying LIFE with Jesus like he would never experience on earth. Pete and Laura grieve for themselves but celebrated Noah's life, truly trusting God. There was a beautiful strength and spirit there that I knew was from Jesus.

Also hearing the tributes to Noah by many besides his parents who loved him and hearing how he had touched their lives and made such an impact on them was a beautiful reminder. There is power, importance and value in his life - and every little baby's life.

I had worried a little about bringing Vivien because I didn't want to cause Laura or Pete any pain in seeing her. All the pictures of Noah remind us so much of Vivien. Laura wrote the sweetest thing on my facebook page. She said, "I have to be truthful and tell you I had my reservations about meeting Vivien today, I didn't know how my heart would take it. But oh..my..gosh! Am I so glad you brought her! My heart could have burst with the immediate love I felt towards her, you, and your family. She is the most precious thing I've ever wanted to snuggle! I hope to see her again soon, and maybe meet your other little blessings. Thank you so much for coming today and bringing Viv! It was so much more healing then I anticipated."

Vivien's diagnosis has opened our world in many ways, not the least of which is beautiful, friendships with those who are walking the same journey as we are. We are s grateful for all that God is doing through her life.

And in the midst of this journey, Jesus hears our prayers and meets our needs, sometimes before we even realize them. On the home-front - our adorable, funny little Iva turns 3 this July.

She is tall for her age and though I know that many children don't potty train until they are three, I knew it needed to be done soon. Todd has been working with her some and "encouraging" me to as well, but with everything going on with Vivien, I haven't felt I had the bandwidth to even try because of the time and energy it takes. So I have been praying lately that God would just cause her to start asking to go and show an interest on her own. He probably sensed my quiet desperation and decided to help a girl out because about a week ago, she began to ask more and as of a couple of days ago, she has been staying dry and even getting up in the middle of the night and asking to go. I love that we can pray specifically and that He answers specifically, caring for us even in the small things.

We were also able to go on a trip to Eastern Washington to visit my relatives and my Granny who turns 100! this month.  We weren't sure whether we were brave or crazy or stupid or a little bit of all three to take 5 kids 5 hrs across the state, figuring out how to pump and keep up with Vivien's feeds and pack all of her many accessories at the same time. Getting out of the house alone was enough to nearly put both Todd and I into the looney bin and narrowly escape needing an anger management course but we made it. We were thankful for the Grandparent's help as well.

It was fun to have my sister and her family along too because I now have a new brother-in-law.  Anna married her longtime boyfriend in a surprise wedding last week and I am happy to introduce her now as Mrs. Myers!

As Todd and I were driving home recounting the trip, we knew it was definitely worth the effort. It was so wonderful to see all of our relatives, to attend Gran's birthday and for the kids to play outside exploring the countryside and playing games with the cousins all day long. I always joke that I miss my kids when we come to Pomeroy because I never see them until nighttime. Iva and Lucie were toted around piggy back and anytime Iva was inside she entertained the adults with her funny little ways.

Throughout birthday party, Todd sat beside Gran with Vivien in his lap and Gran just kept her finger out and Vivien's little fingers wrapped around it. As Todd's Dad (who came along) said, "It was so fun to see the oldest and the youngest together," loving on each other.

Throughout the weekend, Vivien was held and loved and admired. Even during the times when she was sitting in her little chair, I'd look around at everyone chatting and notice that someone was just sitting gazing into her face, or talking softly or singing to her. One of my cousins' girls probably spent an hour singing to her as she slept. Another cousin was telling Todd how he prayed for Vivien and held up the picture of her on the screen saver on his phone. The intensity of their love for her made us feel so grateful for our family.

We felt very blessed by the love of the community too. When we went to the facility where Gran lives, people recognized Vivien right away. And when we went to church to celebrate with Gran, the pastor surprised us by calling us up to the front, introducing Vivien to the congregations as the "miracle baby" that they have been praying for, and then laying hands on us and Gran and thanking God for what He has done. Once again, we realize how many people have prayed for Vivien that we haven't even met.

In another God wink - He again worked things together for good in our lives. Todd returned to the car last week to find a note on the windshield and a dent in our side door. He brought the car in to get it fixed this week and found that we'd receive a loaner in it's place, paid for by insurance. When he explained our situation with Vivien, the kids and our upcoming travels, he was able to get this!

It was wonderful to have a larger car to take, with more room and the ability to bring my mom in our car instead of having to take hers. Once again, Jesus met our needs and turned an annoying situation into a huge blessing.

Overall, this last week has definitely been better than the previous couple with Vivien. We are so glad to see her feeling better. Now we are working on figuring out her feeds as she is learning to eat on a bolus (several times a day) feeding schedule rather than a continuous one. It has been wonderful to have more times when she is not attached by tube to a pole. Please pray for wisdom as she has been spitting up some and we want to figure out the amount she needs and what she can handle while still allowing her to grow.

She had her first food taste and though it was small, she appeared to like . She has received her hearing aid (which she is wearing in her headband here) and it's fun to see her respond to our voices (and nice to take it off when the kids get too loud.)   She had her 6 month check up, is height and weight proportionate, is almost 12 pounds and is doing great without any medication. The doctor said if she continues to grow this well, she may even be on the charts by 9 months.

Thank you for your prayers for her and for us. We know that God is listening and He is faithful!

6 Months Old... and what Contentment Looks Like

There are a few things that I want to say in this post about what God is teaching me but even as I think about them, I am having hard time figuring out how to articulate them in a way that is both honest and encouraging. I have been struggling with a bit of discontentment lately and asking Jesus for His truth about joy in my life.

Smiles!

I will start with telling you about Vivien. She is 6 months old today! We are truly so encouraged by how well she is doing and how healthy she has been. She has been giving us some beautiful smiles, a few of which we have caught on camera. At her recent cardiologist appointment, Dr. Allen was pleased with how everything looked and took her off lasix. She is now on a multivitamin each day and that’s it!

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.

Fashionista Baby

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.

Sunggles

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!

Tiger Mountain

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.

Making new friends!

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.

Bathtime

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.

Noah

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.