An Invitation and an Update

Viv Does Disney 

Valentine's Day!

Well it's been far too long since we've posted here. First I want to share an invitation with you to an event at our house. It's part of a bigger story and we hope you can make it. I will also just share a bit of what has been going on in our life with Viv at the end as well.

Last fall Todd and I had an appointment in our home with several of Vivien's therapists. It was an annual meeting of sorts and during the meeting they evaluated her progress and talked about some of the goals we have for her growth and improvement.

After the appointment, we were in the kitchen, reflecting on how grateful we feel for the support we have from therapists and medical professionals who are in our home every week and who genuinely care for her. They were oohing and aahing about her progress and we felt very blessed. We were talking about the good insurance we have, our proximity to Children's hospital and just how supported we are by friends and family just based on where we live and what we've been given.

Our conversation moved on to kids with disabilities and special needs in places like third world countries. If Viv had been born in a different place in the world she would probably not be alive today. Both of us had been feeling a strong pull from God toward kids with disabilities in other countries and we talked about it together that day.

Since then, my cousin Rachel (who lives in Uganda and with her husband is building a hospital there - we wrote about it here) has connected us with a woman named Edith Lukabwe and Home of Hope - a home she runs for children with special needs in Uganda. Rachel has visited her often and has been impressed with Edith's love for the children she cares for and for the Lord. Edith had a son with special needs who lived to be 17. She was ostracized because of her son, because many in Uganda believe you are cursed if you have a special needs child. Many children with special needs are thrown in to a river or left to die. Edith cared for her son for 17 years, but found her heart drawn towards other children with special needs. Home of Hope was born out of this care and concern and God has allowed her and her staff to care for many children.

Edith at Home of Hope

She has an amazing story, but Home of Hope is overcrowded and they are in need of funds to expand. An wonderful lady who runs and organization here in the US has sponsored her ticket here to come to the US and share her story and the need with those who also have hearts for special needs kids.

Edith will be coming to our home the first weekend in April and we want to invite you to come hear her heart and her story on the evening of Saturday April 1, or Monday April 3rd. We are doing two evenings to enable more people to come so choose whatever works best for you. We would love to see you, fellowship with you, feed you pizza and hear about some of the amazing things that God has done.

Edith’s website and a short video about her:
Home of Hope

Video about Edith and Home of Hope

Donate here you are unable to make it:
Donate


ADDRESS AND DETAILS - Meet Edith & Pizza Night:

April 1 (Saturday) & 3 (Monday), 2017 6:00 PM - Pizza, Fellowship and Edith's Story

Merry Home - For address and details feel free to e-mail:
vivienandhomeofhope@gmail.com

We hope you can make it!


VIVIEN UPDATE:

The good news is that there is no dramatic health news to report. We've had our share of colds and fevers that have gone around the family this winter, and Vivien has had one or two. We had a visit to the doctor in January because she had a bit of a fever, like the rest of the kids but she got her antibiotics, and her flu shot a little earlier this year and she has done remarkably well. A few of us got the 24 hr stomach bug that has been going around but Vivien actually escaped unharmed. She is growing taller and more responsive and recently we increased the amount of food she is getting as well. 

It's a Small World

The big news is that our little traveler has now been to Disneyland!

Vivien has been to "It's a Small World" and gotten her picture taken with Minnie (a stuffed Minnie that is). Her brief but happy visit came in the middle of our Merry-trip-of-a-lifetime to CA where we spent time doing the Southern California circuit.

It's a Small World

We had a wonderful time despite me losing my breakfast at Sea World and Lucie and Silas getting sick on the way home. Thankfully the bug was 24 hours and as I mentioned before, Viv did not get it! 

We celebrated 3 birthdays on the trip - Lucie's, Pada Merry's and Silas' and were sorry to miss Mishayla's but got to celebrate it beforehand.

Grandma & Viv

We are thankful to Grandma Melquist who stayed with Viv back at our timeshare for a lot of the days of the trip, enjoying time with Viv and relaxing. She joked that she was glad for the excuse of "having to watch Viv" instead of walking miles around the amusement parks, but she and Viv did join us for Sea World and at the beach.

Disneyland New Orleans Square

Silas was getting her ready
and decided she needed his hat.

Driving 10 people (Grandparents too) in two vehicles 2400 miles round-trip meant that we were not going to just jaunt down for a couple of days and come back so we wanted to make it worth our while. The trip was a little over two weeks of visiting with friends, doing amusements parks, enjoying the ocean and most of all, some great family time.

At Oceanside Celebrating Pada's Birthday

When Todd went back to work the day after our trip, there were some tears on Maggie's part. I asked why she was crying and she said, "I miss California." I said, "You miss Disneyland and the fun we had?" Her response was, "It's not just Disneyland or the fun things we got to do - it was getting to be with Daddy every day, without him having to go to work, being all together with Pada and Grandma and everybody. I miss all of us being together all the time.".... I guess that was just about the best takeaway that could happen from our trip and it made my heart happy, despite her tears.

Valentine's Day Viv

I also want to share about something Lucie said recently that I felt was profound, despite her matter-of-a-fact way she spoke it. It is pertinent to Vivien's health update and her perspective made me incredibly grateful.

A few nights ago, I read about Jesus birth in our "Jesus Calling Storybook Bible" to the little girls. Viv was lying on the bed with us. It talked about Jesus coming down from the riches of heaven to earth in a stable. The verse given was about how Jesus made himself poor that we might be rich.

I talked with the girls about how we can be grateful to Him and for the blessings we have (meaning both spiritual and physical).

Lucie said to me, "Yeah, nothing bad has happened to us." I was trying to figure out what she meant by that. She said, "We don't have allergies and nothing bad has happened to any of us." I asked her if she meant we were healthy. She nodded affirmatively.

My thoughts immediately flew to Viv thinking "how can she think that?" But at the same time, I felt an immediate joy and gratefulness for her perspective and I realized in a sense, how true her thoughts were.

Vivien's diagnosis is a lot 'worse" than allergies. It brought great pain and tears. It was definitely a "bad thing" that happened to us. She wasn't a bad thing, but her diagnosis was (and is). Let's call it what it is Trisomy 18 is a "bad thing". And yet, I believe the truth with all my heart that God works all things together for good for those who love Him. Truly it's amazing that Lucie doesn't even notice or think because that Viv is hooked up to a feeding tube 5 times a day and is on a pulse oximeter at night that it's a bad thing. It means she really sees our family as just happy healthy and normal. (And truthfully, most of the time I feel the same way.) It's huge sign of what God's grace and blessing really means.

God's goodness to us doesn't always mean that nothing bad happens. But it means that He can give a profound sense of blessing - peace and joy and "normalcy" in our hearts in such a strong way that Lucie doesn't even count Viv's condition as a bad thing. Viv's diagnosis is bad. In our fallen world, sickness, poverty, pain etc are not "good things". Yet, because of Jesus - we live in such a way that it doesn't feel bad. We feel blessed. Even in our emotions.

The kingdom of God is "righteousness, peace and joy in the Holy Spirit." When "bad things happen" and we live in such a way that it doesn't feel like a bad thing - this is JESUS. This is why He came. To help us inherit a kingdom where " bad things" don't effect us like we might expect, as we process and work through them with Him and with His grace. This is true redemption. This is true blessing.

I thought back to the blogpost I wrote, just a few months before Viv's diagnosis. I feel as passionate today about what I wrote as I did then, despite the sense of despair that came over me in those first few months. It's not that sorrow or negative emotions are wrong. They are necessary. But moving from sorrow back to joy is a process we work through with Jesus.

I am grateful for Lucie's simple words that spoke volumes to how she feels about Viv and our life.

Lucie and Viv last summer at Maggie Lake

I hope you are able to join us on April 1st or 3rd!