Tuesday, June 06, 2017

1000 Days Old! School, Uganda and Save-theDate - By Todd and Molly

By Todd

1,000 days ago, we entered into a life-journey we never expected. As every parent does, we’d prayed for a healthy child and delivery. I had never really thought much about caring for a child who would have been disabled or frequently sick. It just seemed like one of those areas I didn’t spend too much time thinking over. When we first heard of her diagnosis at the 20 week ultrasound, I really was angry with God. Giving us a healthy child seemed so easily in His grasp, and yet He thought otherwise. While I don’t love her disability, I do love Vivien. I love how she (and He) has changed our lives through an illness we never asked for.  We are so grateful for what He has done.

After birth, the doctors told us we’d have two to four weeks with her. With that prognosis, every hour was a gift. With the nurse’s help, I made a big pink sign to attached to Viv’s incubator that showed how many days old she was that day. Every morning, we’d swap out yesterday’s number for a new one – and sometimes sang happy birthday. One day brought the next and days turned into weeks, which turned into months.

Today our sweetheart turns 1,000 days old! She has grown into a beautiful little girl full of life and joy. She truly is one of the happiest people I’ve ever met. She is the most content and easily pleased of all of our children. Her life has shaped our family in ways I never had expected. She is adored by her siblings who don’t seem bothered in any way by her limitations or the inconveniences caring for her sometimes  brings.

This September, Vivien will graduate out of the “Birth-to-Three” program. This means that instead of her therapists coming to our house, her therapy will be provided by the school district. Viv will be going to preschool four days a week. This is a specialized preschool that is only about a mile from our house and we've heard great reviews from friends who've had kids attend there and are excited for more therapy for her.

By Molly

I too am excited to celebrate Viv's 1000 days. In the Trisomy 18 community it is common to count by days, rather than months or years because of the expectation that the days will be short. So reaching the 1000 day milestone is definitely something to celebrate.

Viv and Grandma Merry on Mother's Day
As Todd wrote above, we are thinking about preschool for Viv. We've been joking about the fact that we have homeschooled all of our older children but Vivien will be going to school! It is just a couple hours a day but we are looking forward to watching her progress. We have been meeting with so many specialists at her school who are evaluating how to help her from motor therapy to audio and visual, to the school nurse and psychologist. We are excited about all the people that are going to be involved in our little girl's life.

Please Consider: Our family is going to be bringing her back and forth and volunteering at her school and we were thinking how cool it would be if she had lots of friends volunteer whether it be once a week, once a month or once a quarter. We want to invite you to come and volunteer in her classroom if you like. Just contact us and we can get you the form. So many of you have prayed for her and watched her grow. We know it may be an out of the box request, but think about it and pray about it. If any of you are local and just want to spend some time with her and give back to the community we'd love to see you at her school!

Save the Date: Vivien's third birthday party will be Sept 2 at our house so save the date! 
UGANDA TRIP: We'd love your prayers and support 
We are celebrating Viv's birthday a little early this year because Todd and Maggie will be heading to Uganda on a medical missions trip with City Church in mid September. They will be visiting orphanages and doing medical clinics. At the end of their trip they will visit my cousin Rachel and her family and also get a chance to visit Edith at Home of Hope. They are excited to serve and if you would feel inclined and be willing to give toward their trip we would be grateful. Click to give HERE.

Thanks for celebrating Viv's 1000 days with us!

Wednesday, April 12, 2017

Vivien's Influence...

Well we have always known that God has a purpose for Vivien here. He has done much in our hearts and lives through her.  She has touched many through her life.

Recently we have felt, more than ever that God is showing us what He is going to do through her life. When Edith Lukawbe left our house a couple weeks ago, she left us in wide eyed wonder and amazement at all that God is doing because of Vivien's influence and place in our life.

Many of you know that we were made aware of Edith through my cousin Rachel. Rachel originally went to Uganda to help children with special needs. She met her husband there and now lives  and she and her husband are raising funds to build a hospital. She would visit Edith at Home of Hope every couple of months to help out and visit with her. Home of Hope has 55 children who have been abandoned because of their special needs. In Uganda children with special needs are considered curses and even the mothers who bear them are considered "cursed". If the child has epilepsy, they are often believed to be demon possessed.

Edith had a son with special needs and through a long set of semi-miraculous circumstances (I wish all of you could hear her incredible story) ended up starting Home of Hope, a place for children with special needs where they can be fed, cared for, given medicine and physical therapy and most of all loved.

We were made aware of Home of Hope through Rachel and thinking of of Vivien and her special needs we sent a monetary gift to them at Christmastime (which came from my Granny Melquist). What we didn't know at the time was what desperate straits Home of Hope was in and how timely the gift was.

In early February, Edith contacted us saying that an organization in the US (Embrace Kulture) was sponsoring her to come to the US to raise funds for the expansion of their home. She asked if she could meet with us and if we would have any opportunity to help. She introduced us to Christa Preston who founded Embrace Kulture and was setting up her schedule. We found out that Edith would be in San Francisco at the end of March and since we had some credit card air miles, we offered to fly Edith up here and help with some of the fundraising.

Edith had never been to the US until now. What we didn't know is that Edith was praying about asking someone in America to possibly start up a non-profit or foundation so that Home of Hope could have a US base, as well as a Ugandan base. Embrace Kulture is its own non-profit and was generously hosting Edith, but sending money to Home of Hope in Uganda is a bit of a complicated process as we had found out in December. She was praying about who to ask to start up a US base. We had been on her mind but she was praying for confirmation.

When she arrived and laid eyes on Vivien, she was amazed. Apparently we hadn't thought to tell her that we had a child with special needs and when she saw that we had Vivien she felt like God confirmed it in her heart to ask us. It was evident to us that she was completely enamored with Vivien and we loved watching her interact with her.

As she sat down with us, and told us her story we were awed by all that God has done to bring about Home of Hope and our hearts were drawn to wanting to help her more and in any way we could. A friend of ours had brought up the fact that it would be good for Edith to have financial oversight and a US presence so it had already been on our minds.

We truly felt like God was at work. As we discussed the possibility of starting up a non-profit, God started opening doors and a friend happened to give us the name of a woman who helps with non-profits and another woman who helps churches and organizations with 501c3 statuses. So we are now in the process of learning about how we can do this for Home of Hope.

We enjoyed our 4 days with Edith. She had speaking engagements and meetings several times a day each day she was here.  She spoke at both services at Redeemer Eastside on Sunday.  It was busy but we did get to take her on a quick 3 hour sightseeing trip to Seattle Monday morning and let her experience the Space Needle. We are grateful for all the opportunities she had while she was here, and grateful to Christa and Embrace Kulture for getting the ball rolling.

We truly feel like God has used Vivien to broaden what He has for us and we are excited about what He is going to do through all of this. But there was one point in the conversation that caused us to praise Him and to believe that He has connected our lives with Edith's in an inexplicable way.

After Edith told us her story, we were talking more about her son and asking her questions. Derek lived 14 years with special needs and was Edith's motivation to start Home of Hope. I asked her how long ago he died and she told me 2014. I asked when in 2014 and somehow I just knew she was going to say, "September." She did. As we talked more, we realized that they day that they put Derek's body in the ground and both celebrated and mourned his life, was the same day that we were celebrating Vivien's entrance into the world. She was born the day of his funeral. We do believe that God has truly connected our life with Edith's and has a plan for what He is going to do and how he is going to help Vivien have a small part in helping more children like her, even if it is across the world.

If you'd like to help Home of Hope expand we have almost reached the goal and there is about 2 weeks left to give to the crowd fund.You can give here. http://help-edith-expand-home-of-hope.causevox.com/

Thank you to all of you who have supported through prayer and giving generously and coming to the events.  Also thank you to those who contributed cloth diapers!  We were able to send Edith home with 2 big suitcases full and hopefully Todd and Maggie will be able to bring more in the fall.  As a side note, when Edith traveled to LA with the suitcases there was a mix up about the cost of the baggage.  The flight attendant, after finding it out told Edith that she didn't need to worry about the cost.  Edith replied to this effect, "I think God made you do that,"  The attendant smiled and said back, "Amen!"  It's so fun to watch God work.

We would appreciate your prayers as we go through a learning curve of setting up a non-profit, a 501c3 and a giving website for Home of Hope.

In the meantime we are celebrating what God is doing through the life of our little girl and how he has used her to continue to touch others lives in ways we never dreamed of.

Lastly we want to share this little video we took of Vivien recently. We'd never given her a baby doll before but Maggie was playing with her and we were amazed by her response. She played with her for quite a while and we've never seen her respond to a toy quite like this!  Enjoy!


Saturday, March 11, 2017

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:

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:

We hope you can make it!


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!

Friday, December 16, 2016

2016 Merry Christmas Letter!

Merry Christmas from the Merrys!! Christmas 2016

As we write this, there is word of snow in the air – and the kids can’t wait! We hope this letter finds you reflecting on the year with gratitude and joy. As Christmas gets closer, we’re reminded of Christ’s birth and the joy only He can bring.

Isaiah 9:6 “For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.”

The story of God’s redemption never gets old. He saw we were broken and paid the highest price to bring healing. His joy is real and it gives us strength in the hard times.

Here’s the latest on the Merry clan – starting with the shortest….

Vivien (2 years old) is a joy and delight! Her personality has certainly come out this past year, as she continues to become more interactive. She regularly responds to laughs from the kids and kisses from Molly. She loves playing with her toys in her “little room” and is always enthralled by the ceiling fans. She quickly recovered from having her tonsils removed in September with the hope it will help with some sleep apnea. We are so grateful for the wonderful therapists, doctors and family who really do delight in Vivien.

Speaking of delight, Iva (4 years old) gets the most laughs out of the family. Her silly sayings often get repeated throughout the family. She absolutely loves books and has been found to be reading stories to Viv. Iva loves to do schoolwork and is proud to display her abilities to anyone who will listen. Following in Maggie’s footsteps, Iva can create the most fantastic story with just a couple of stuffed animals (complete with sound effects).

Lucie (7 in February) has taken on the role of nurse in our house. Her sensitive nature gives her insight into the needs of others. She serves in quiet ways and loves to surprise people in ways they didn’t expect. She loves fiercely and fully. Lucie continues to meet new friends wherever she goes – always coming home from an event saying “I met a new friend today”. She is loyal and caring.

Silas (10 in February) is always creating new gadgets and gizmos. He frequently comes to us saying “Look what I built!” Airplanes seem to be his strongest interest, but he’ll take apart anything he can. He recently wrote a beautiful song on the piano which he calls “Family”. Over the past year, he and Todd tinkered with a small motorcycle that they got running. We took it camping and enjoyed putting some miles on it together. He is definitely all boy in his interests, but there are times that he surprises us with his sensitivity and thought out observations about life and people.

Maggie (12 years old) is becoming more of a young lady every day. This fall, her school workload really increased and she embraced it well. She’s great at planning out her week and sticking with her schedule. I’ve loved homeschooling her as she has gotten to this point of discussing ideas and formulating her own opinions. Maggie is a voracious reader and devours books pretty quickly. She has taken a babysitting class at Children's' Hospital and is open for business with a few babysitting jobs already. She also keeps her siblings in line when we need to step out for a bit. She is so good at thinking of fun things for them to do and when she is around they are never bored.

Molly continues to enjoy making a house a home, enjoying the antics of the kids, and feeling both overwhelmed and amused by turns. She still loves to blog and write and self-published a 5 week women’s study called “In the Garden” for an event at our church this year. The kindle and print version are available on Amazon and online bookstores. She continues to plot and plan ways to travel and her highlight was Maui this past year. She has taken up jogging again, is involved in a women’s’ Bible study at church, tries to get some live theatre in when she can and loves to spend time with family and friends.
Todd is enjoying his job at Medic One more every day. Lately, it has been the sleuth work involved in diagnosing patients that has been a particular joy. The job can be hard at times, but he really does see it as an opportunity to help others. He gets to work with some great people as well. Homeschooling the kids and teaching at co-op has been a delight as well. He’s really enjoyed teaching the middle school kids at co-op this year. He feels fortunate to be able to homeschool the kids as much as he does.

A few great events this past year….

SOFT Conference – Every year, the SOFT organization (Support Organization for Trisomy) has a 5-day conference in the US or Canada. This year, it happened to be right here in Tacoma, Washington and we got to show Viv off and attend with the whole family! SOFT (Trisomy.org) is an agency established to help families who have or have lost a loved one to Trisomy 18, 13 or other related disorders. This conference really was a wonderful time to meet other families from around the country. We were also able to attend classes and workshops on various issues related to Trisomy 18.  Pictures are in the post following this one.

We had some splendid trips and vacations this year. Yes, we had both. Vacations involve Todd, Molly and Viv (relaxation, exploring, sun and fun). Trips are not the same as vacations because they involve all the kids (lots of work, a little exploring, even less relaxation but still lots of fun)… As you can see, there IS a difference . We all went with the Grandparents to Idaho in early spring and enjoyed beautiful Lake Coeur’d Alene. Despite a few of the kids being sick with fevers we still managed to have a wonderful time. Maggie and Molly got to take a couple days in Leavenworth in May and in July we had our annual fourth of July trip to Seaside. June brought unforgettable Maui and the celebration of 15 years of marriage and being "true loves" as Iva calls us. We got 10 days of sun and beauty. Our wonderful cousin Gretchen, who is a nurse and Aunt Carla came along to care for Viv while we explored one of the most beautiful places in the world. We felt very blessed. August brought Family Camp at Warm Beach, Todd and Silas's yearly camping trip and Maggie Lake camping for the whole family. And Molly’s Granny Melquist passed away in the fall so we visited all the cousins in Pomeroy and truly felt grateful to celebrate Gran’s wonderful life at her service there, enjoying family and the heritage Gran has left us.  Again - lots of pictures of everything in this paragraph in the following post.

Throughout the year the kids have been involved with piano, Awana and in the winter, basketball. This coming year we will have 3 in Upwards as Lucie will be joining cheer. We’ve also tried to be intentional about implementing not just date nights twice a month for Todd and Molly, but also some one on one time with each of the 4 oldest once a month and it has been fruitful and fun. Dates for Todd and Molly aren’t necessarily about going out, but are usually defined by being together and having the ability to finish full sentences in conversation without being interrupted. Dates one-on-one with the kids usually involve a small treat and going somewhere fun. Some of the places so far have been inner tubing down Cedar river, the dollar store, Starbucks, various parks, Dairy Queen, thrift stores and Clam lights. We're getting pretty good at cheap dates and selfie sticks.

Next year we are looking forward to more of the same, plus a trip to Disneyland and Uganda. Our family will be going with the Grandparents to Disneyland in February and in the fall, Todd and Maggie will be going on a medical mission trip to Uganda. Maggie is especially excited to meet Brenda, a girl in an orphanage that we have supported for the last few years and whose letters are full of love, sweetness and excitement to meet her "sister" as she calls Maggie. They will also be able to see firsthand the work that our cousin Rachel and her husband are doing in building a hospital and ministering there. We are excited to see what God is going to do in and through Todd and Maggie in Uganda.

Spiritually this has been a year of joy, learning and stretching. We have been thinking on the word stretch. Sometimes life and love and kids and doctors appointments and homeschooling and all that that entails makes us feel stretched thin. But at the same time a good stretch can feel very satisfying and fulfilling. It is good for your muscles and lungs and after a nice stretch makes you feel more relaxed. The more we are stretched in life, the less we stress about the things that aren't truly important. We can relax and not sweat the small stuff.

Recently we have felt like the Holy Spirit has asked us specifically to stretch a bit more in our life. Thinking about what He asks us to do at times makes feel both overwhelmed and excited at the same time. We know that when Jesus whispers, "yes, you can stretch a bit more" we know that He gives grace to do so and we feel honored that He trusts us with His work. There is a thrill and joy in hearing Him speak clearly and knowing that He is trustworthy. And when HE is the one doing the stretching as opposed to doing it in our own strength He expands our world, broadens our ideas and our love and makes us fuller, richer and more enlarged in what He has called us to do and who we are. Stretching results in growth and we are excited to see how He is going to lead and grow us in the year ahead.

Thank you for reading this letter and being part of our lives. Thank you for your encouragement and friendship. We feel so blessed to be surrounded by the family and friends we have. We love you and wish you the best this Christmas.

The Merrys

2016 Family Photos - Merry Christmas!

I know I say this every year but it bears repeating.  Please excuse us if the order is rather random and the amount is rather astounding! We are way too picture happy and we love our kids, family and friends.  If we know you at all - you may find yourself in some of these.  Feel free to click on the pictures to enlarge.  Merry Christmas!



Happy New Year and have a wonderful 2017!