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Happy Birthday Mama!
We said goodbye and celebrated my mom’s birthday on January 5th, 2014. She would have been 68 years old. We met at the church early to make her a wreath. My sister-in-law, Gayle, brought artificial flowers and the styrofoam so the grandkids could make my mom a forever wreath. My mom always made wreaths for friends and family and sometimes people she barely knew after they had died. She made these wreaths with a marker for their name. She always said she hated that it took forever for headstones to be carved and there was no indication of who was recently buried. So she made forever wreaths that could be placed at the gravesite. It was fitting that the grandkids made the final one for her.
We had champagne cake to celebrate her birthday because that is what she always brought to the kids for their birthdays. It was their favorite. We decorated the sanctuary with balloons and giant pinwheels (thank you Marcy). We hung streamers and brightly colored balloons downstairs. We had her meal catered by a Howard Ball (Feedshed Catering) who for years has smoked porkchops that mom has brought down to us. Friends and family brought more bars and candy. Grandma made her famous prune bars (delicious even though the name doesn’t sound like it).
The church is very small. One of those small community churches that are slowly fading away. I was baptized in this church, confirmed, and married there. I had my high school graduation and wedding reception there. This church holds many good memories for me. It was hard to go back after all these years to say goodbye to mom. I’m not sure how many people the church normally holds, maybe 120 – 10 pews each side, 6 people to a pew).
The basement hadn’t been used in years so friends of my mom, members of the church, cleaned and set it up for us. They set up overflow seating in the addition, maybe another 100 seats. All the seats were filled. The family had gathered in the basement to pray before the service. As we were waiting for it to start, members of the church kept coming down to get more chairs. They just kept coming and coming. It made me smile to think about my mom, who sincerely thought no one would show up at her service. She didn’t want a funeral because she believed she really didn’t know that many people who would come. There were people standing at the back of the church because there was no more room for chairs. It did my heart good to see that. On top of that, I heard from over 20 more people who couldn’t make it because of the weather. Who knows what would have happened if that horrible polar vortex hadn’t hit.
I don’t believe that my mom thought the Christ-filled life she lived really impacted people. She went about her life without fame or fanfare. Magazines and newspapers weren’t writing articles about the gifts of generosity and giving that she did. No one was writing about wiped noses, or games attended to, no one wrote about sleepless nights, or hands held and all of that is okay because she wasn’t doing it for notoriety. She simply cared about others. She lived to make people smile. One of her friends that served on the city council with her told me that ever since her mom passed away the year before, my mom would see her and give her a hug. Mom always said, “Here’s a hug from your mom.” She just cared when other people hurt. She loved to give stuff away. She loved to brighten your day.
The most money my mom ever made per year was $24,000. She was married but my stepfather didn’t make that much either. She spent the past 10 years babysitting for her grandkids. She certainly wasn’t going to get rich babysitting but she loved being with the kids. If you were at the service, you could tell how much they loved her. Her grandkids knew her. Her grandkids knew how much she cared. Her grandkids knew, if it was possible, she would be their cheering them on.
Mom wasn’t perfect by any means, but her heart was always in the right place. Life hadn’t always been kind to her. She had suffered with sarcoidosis since Cassie was born. She often felt ill. Perfumes would make it difficult to breathe. Yet, she would attend every recital, game and church event that she could. She would have to hide in a back corner sometimes if the scents were too much, but she was there.
Mom proved over and over again that you don’t have to be rich to be generous. She believed it wasn’t how much you had but what you did with what you had. She gave of her time, her heart, and her money. She would honestly give you her last dollar rather than keep it for herself. Every year when we had our craft sale, I would give her the lecture on raising her prices. I would say, “It’s okay to make a profit.” and she would just laugh at me. She would say, “I am making a profit. Plus, I get to make people happy.” How do you argue with that? She loved finding bargains and passing them on to her customers. We were at the Iowa State Fairgrounds for the past 10 years. Every year people would show up and say they headed to our booth first. It was always a wonderful weekend. Mom would spend the weekend here at the house and camp out with the kids.
I will miss the craft sale weekend and the Women of Faith weekend the most. I always looked forward to them. This year was the first one in over 11 years that I had to miss. Mom went even though she had to spend her weekend in a wheelchair. I was in the hospital with Evie and didn’t feel like I could leave. We had said we would go to the one in Minneapolis in October but she never got well enough to go.
Thank goodness I always took the time to talk to her and to visit her. I can honestly say I regret not being there with her at Women of Faith this year, but it was impossible to do so. Other than that I have very few regrets. I talked with mom a couple of times a day. She was one of my best friends. She held my hand on the worst day of my life, when my little boy died. She held me up. She encouraged me. She loved me. She was a great mom and a true friend.
She believed with her whole heart that she was going to a better place. “Home” is what she called it. She always said, “If God has a plan for me, I’ll still be here. If not, I will be hugging my grandson until we meet again.” She always had great faith. She believed in God’s plan. She trusted it no matter what. She fought as hard as she could until her body could take no more.
She lived a quiet life. She made mistakes. She believed in God with her whole heart. She loved. She gave. She changed lives and had no clue that she was doing that. She is a beautiful soul that lives on in all her children and grandchildren. She leaves a wonderful legacy of caring and giving and she didn’t have a clue that she was doing it. She just fully believed it was better to give than receive.
I will miss her and if I didn’t have every hope in a future with her, I would be unable to face my day. BUT I do have hope. For it is by grace you have been saved through faith — and this is not from yourselves, it is a gift from God. Ephesians 2:8 Thank God for His grace. Thank goodness I can rely on His grace for an eternity to spend with her.
Today brings me one day closer to seeing my mama again. Today I may have moments of sadness but I will not be overcome. I will hold firmly to the promises that He has made. Promises to give me a future and a hope. I hang on tight to that hope.
Here are a few of the pictures from mom’s slideshow.
We played her slideshow with the song by Steven Curtis Chapman, See You In A Little While. It was very fitting, especially the second line.
See you in a little while Mom! Give my little boy a hug for me until we are all together again. LOVE YOU!!!!!
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Thank you!
Today I started to write a blog about Jasmine and I noticed what number post my next post would be. It would be number 200. That is just crazy! I told my husband I couldn’t believe I had that much to say and he laughed. I’m not sure why….it’s not like I’m a talker or anything. Ha! Ok, family and friends who know me well, you can stop laughing now.
To top everything else off I got my year end results for visits to the blog. 39,969 visits. I called my mother-in-law and she has guaranteed me that she didn’t just sit at home and sign on and off 100’s of times a day so that means the blog has a few followers. I mention this number not to brag but to say “thank you”. I am amazed because I know that I personally do not know the 1,000’s of unique visitors that it says I have had to my site.
Thank you to all of you who follow our story. Thank you to those who pray for our family. Thank you for your support and encouragement over the past 18 months. Thank you for your kind words when my heart was hurting and for celebrating with us when we had great news. It constantly amazes me and humbles me that we have such a great group of prayer warriors covering our children as they grow. Thank you! Thank you! THANK YOU!
Praises to God who continues to bless us in ways we could never even imagine. You’ve heard me say it before and I’m sure I will say it again….I am seriously blessed. My heart is overwhelmed with gratitude. May your new year be blessed too!
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Lainey Lou is no Longer Two
This was one of the first pictures we received of Lainey or Lan Lan as they called her.
Lainey – we were told she has a sweet, bright, and welcoming spirit and loves to cuddle.
Her name has evolved over the last 7 months. She gets called Lan Lan, Lainey Lou (even though her name is Lainey Rae), Lambie, and Lainey Lambchop. Her animal has become Lambie from Doc McStuffins. Which works out pretty good because everyone in our house loves the Doc McStuffins song, “I feel Better” and on the show, Lambie is so very cuddly.
Lainey knows how to cuddle. Lainey loves to lay her head on your shoulder. When we were in China, that was the only place that brought her comfort.
We have come a long way since those days in China. I have spoken often about how trying those days were. Lainey was very happy at New Hope. We sponsored her and had many pictures and reports of how happy she was. She had individualized care and people who knew her well. I do believe she was happy there. The problem began when she was transferred back to the orphanage two weeks before we arrived in China. She had a 14+ hour train ride. She was with people she didn’t know and they didn’t know her triggers. If Lainey starts throwing a tantrum and you don’t stop it within the first minute, it turns into a full blown rage. I’m sure she was left alone to rage quite often. By the time we got her she was a mess. She was raging and angry and scared and in constant meltdown mode. There was no eye contact. She was non-verbal. She couldn’t calm herself at all.
Within just a few weeks at home, things got better. We knew what was going to upset her. She was smiling and playing and happy. She still loves to cuddle on your shoulder.
She especially loves daddy. Daddy has an office in the basement. We have a gate at the top of the basement stairs. As soon as she hears that gate click, she runs to her daddy and lays her head on his shoulder. It’s her very favorite place to be.
Now we know her triggers well. We can head off most problems. Instead of being upset most of the time, she is rarely upset. She has purposeful play. She is trying to vocalize. She has said, “Ma, hi, Gee (Grace), Dad, and yeah.” You should have seen her daddy’s face the first time she said, “Hi Dad!” so clearly. She plays around the kids and wants to be part of the play even though she really doesn’t understand how to play with them. She loves to run. She loves to laugh. She loves the wind blowing in her face. She loves water and will play in any amount of water anywhere. She runs to the backdoor gate whenever anyone comes home. She puts her arms up to be picked up.
Her PKU has been relatively easy to control. She doesn’t really want other foods so we have been lucky that way. She loves rice cereal, baby food – squash, green beans, sweet potatoes, and pears. She does ok with her weekly finger stick. We have been staying within the range most of the time.
We still have a ways to go with the sleep issues. She routinely wakes up every 90 minutes to 2 hours. Although, she slept for 4 hours in a row the other day. IT.WAS.AMAZING!!!! We still have to take shifts and big sister Cassie routinely cares for her. I’m not sure what I would do without big sisters help. Lainey rarely rages, except at night, when she wakes up with what seems to be night terrors. Her seizures are much more controlled now. It took forever to get into see the neurologist. When we finally did, they weren’t sure they agreed with what Dan thought were short seizures but they decided to schedule a video EEG to check. No one wanted to put her on medication until we knew for sure what was going on. It took a while to get the appointment for the VEEG in the hospital.
I was so worried they wouldn’t be able to do the EEG. Lainey does not sit still and she certainly doesn’t like things on her head. It took an hour of holding her down to get the leads on. She fought so hard that she slept for an hour after the leads were attached – so we got a great baseline EEG. Then she had 6 seizures in the next hour that we saw and there were many more subclinical ones that they caught. We didn’t end up staying over night because she had so many seizures in that hour that they got a good reading. The good thing about her seizures are they are very short lasting and they don’t seem to affect her in any way afterwards, but I still can’t imagine having ten or more seizures every hour and functioning very well. Poor baby. It was no wonder she was having such a hard time.
We started her on medication and have seen definite improvements. She is calmer. She is more focused. As Dr. Noble says, “She has great potential for making wonderful strides in the next couple years.” We were thrilled. The truth is she will never be “normal”, but she has come so far already.
I remember my fear in China of what would happen to the family when we got home. Would we be able to handle the tantrums and no sleep? Would it even make a difference? Would Lainey ever be happy? Would she understand love and family?
Well, everyone loves Lainey. She understands family and love. She plays and dances and laughs and sings. I have no clue what the future holds for her but the last 7 months have been pretty amazing. She’s made such wonderful strides and there is real hope for her to communicate and get better. All in all a pretty good year. Praying next year brings even more strides forward for our little girl.
Happy birthday little Lambie.
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My mama…
My mama was everything good and generous and giving. My mama has been my lifelong best friend. Her life wasn’t always easy. She could look stern but she would give you the shirt off her back if you asked for it. She would rather give away her last dollar than keep it for herself. She was never wealthy by earthly standards, but she gave generously. She loved to make people smile. She believed in God and His power with her whole heart. She sang silly songs. Would use the word “jellyfish” if she wanted to cuss. You knew how mad she was by how many adjectives she used to describe the jellyfish. She grew up hearing silly superstitions and even though she didn’t believe them, she would still spout them every once in a while and make us laugh. She said things like “I knew you were thinking about me because my nose was itching or I knew today was going to be lucky because my hand itched.”
She loved her grandchildren and was at every event she could be at. She was always so proud of all of them. She sat through countless recitals sometimes twice in one day. She went to ballgames, Awana meets, school programs of any type.
She especially loved pageants and watching Miss America with Cassie. When Cassie was about 4, Mom asked me if she could put Cassie in a local pageant. I remember laughing because Cassie wouldn’t leave my side. Cassie was a mama’s girl. There was no way that girl would walk across a stage. All the little girls were walking across the stage with their moms. We were last in line to walk across the stage. We got to the stairs and Cassie said, “Mama, I got this. You go stand by nana.” And off she went, waving her hands like she was the real Miss America. I will never forget the tears in my mom’s eyes as Cassie was crowned. You would have thought she won the Miss America pageant itself. As the years went by, Cassie decided to do another local pageant and of course, my mom was there. This is one of my favorite pictures from that time.
She made wedding flowers for barely more than cost and I would ask her why. She said, “Because it makes me feel good to be part of someone’s happy day. I don’t want them to have to worry about the cost.” She did my wedding flowers and Cassie dreamed of the day when she would do hers.
We did crafts together for years, my mom, my mother-in-law Linda, Linda’s sister Kay, and me. We had a great time. We started doing crafts years and years ago. When we first started out, it was because I needed money if I were to ever afford Christmas presents for my children. As the years went by, I didn’t need it but they could use a little help with their Christmas funds. During the last 11 years, we have mainly been doing the sale at the Iowa State Fairgrounds every Christmas holiday. We have our huge booth in the corner. We look forward to all the people that come back year after year and buy from us. No matter what I did I couldn’t get Linda or my mom to raise their prices. They loved passing on their bargains and loved to make people smile so they would just say, “We are making a profit. It’s ok.” During the sale, my mom would constantly get up and give people bags to carry their purchases. It didn’t matter if they had purchased from us or not. If she saw someone carrying a big coat or items they purchased somewhere else without a handle, she was out of her seat, handing them a bag, and wishing them a Merry Christmas. That was my mom.
This is how the booth looked when we set up Friday afternoon.
That weekend was a Christmas wonderland. The kids came and helped us set up. Family helped bring the crafts down to Des Moines and we would all have the most fun. We ate cookies by the bucketful. We laughed. We celebrated making a profit. We would talk about what next year would bring. We stayed up late making more crafts and laughing. The weekend was always a success. We would talk about all the bargains we would find after Christmas was over.
And this is how it looked on Sunday afternoon.
I have many, many wonderful memories of my mom. After Christmas sales will never, ever be the same. I miss hearing her call a couple times a day. I miss her phone messages that would say, “It’s just mom!”. No matter how many times I told her my phone says I have a missed call and you don’t need to leave a message, that message was always there. Oh, how I miss it now. I wish I had saved just one.
I hate that the littles will never run with glee to the door when she arrives like my other children did. I hate that they won’t know that she was called the shoe fairy by Cassie. Mom always found the best bargains for shoes and Cassie, Hope and Grace were always well outfitted. I hate that they won’t have her sitting in the audience cheering them on too. I hate that she won’t be bringing them a champagne cake for their birthday. And most of all, I hate that Cassie hurts because her dreams of what her wedding would one day be like are never to be. Cassie used to dream of driving all over looking for her dress with me, Linda, Mom and Kay. Mom and Kay are both gone now. Cassie and nana would discuss wedding flower colors when she was just a little girl. They would talk about twinkling lights and all the tulle my mom was going to place everywhere. Cassie and Nana had big plans. They had big plans on a budget.
My mom was the best bargain shopper of all. Every year we did Operation Christmas Child boxes. All year long she would pick up sale items – shirts, colors, hairbows, you name it, she found it. She would shop the clearance sales after school started and buy as many of those little plastic pencil boxes that she could find. Last fall she picked up every one that Wal-Mart had. She just threw all that she found for 25 cents in the cart and didn’t count. We usually did 42 boxes. 7 of each of the six age groups. The year before we had done 77 and she thought that was wonderful. This year she wanted to do more. We actually wrapped boxes and filled them this May before I left for China. We knew I would be very busy when we got home. We ended up with 217. She was thrilled.
Every year we went to the Women of Faith conference. Each year our group grew. This was the first year in over 10 years that I had to miss. They are great weekends spent with laughter and tears. We have a slumber party and we all laugh well into the night. This year Evie was in the hospital after having heart surgery and I didn’t feel right leaving her so Cassie took over. Cassie drove the bus and took everyone to the conference. Mom was not feeling well, but she still went. She liked being with her friends and sharing her faith.
There are so many things I can say about my mom, but the thing that touched my heart the most was she loved her grandchildren and she never treated the ones we have adopted any different than the ones I gave birth too. I have heard many, many stories from others that this isn’t always the case. That was what made this whole summer so hard. Mom had a perforated ulcer the night we were to head back from China. She was here with Zach, taking care of the other kids while Dan, Cassie, Linda and I were in China. She was so sick. They rushed her into surgery. She came out of surgery, still not looking like herself. Later on it was discovered that she had had a massive heart attack somewhere before or during the surgery. She went into congestive heart failure and ended back up in the hospital. She went home to recover hoping to get well enough to have her quadruple bypass. She said, “I don’t want to live like this. I want to take the chance on surgery. If God has more plans for me, I will live and if not, I will get to see Kyle again.” She had her surgery and it was going well. She was set to be discharged the next morning and that night she started having blood pressure issues so they took her back to the ICU. We no more than walked her down to the ICU and she coded.
The code put her kidneys in failure, shocked her liver, and put a strain on her heart. She spent 45 days in the ICU. She fought a gallant battle. She finally got out of the hospital and was sent to skilled nursing care. She was happy to be in her home town but her body was just giving out. She started to sleep all day. She was confused at times. The last Tuesday that I went home to be with her she didn’t know who I was and I was heartbroken. We knew that the end was close because she refused to eat or drink any more. She just wanted to be “safe and at home” she would say. We knew what home meant. She wasn’t talking about a building. We decided to take her hospice where we could all be with her.
True to my mom’s selfless, caring way, she passed away on Christmas Eve at 5 p.m. allowing me to go home and spend Christmas with all her new grandkids, four of which had never experienced all that Christmas is. One of the hardest parts this past summer is that my mom really didn’t get to know her four new grandchildren. She only saw them a couple of times because she was just too sick.
One of the biggest gifts my mom gave my children and me was being friends with my mother-in-law. They came to every function together. They came down for shopping days where we had to eat at Red Lobster or HuHot. We took trips together and had two wonderful trips to Branson. During one trip, Kay, my mom and Linda all got in trouble for laughing too loud in the hotel room. I guess the people in the next room didn’t appreciate their bouts of laughter. The knocking on the wall only made them laugh harder. That is how much fun they had together. During the summer when we had no where handicap accessible for my mom to go to, she went to Linda’s. Can you imagine your mother-in-law taking care of your mother for weeks on end? Well, I had that privilege. My mom was loved by many. She was a beautiful soul who will leave a legacy of generosity and kindness.
If that was all there was, I would be beyond myself with grief, but that is not the end. Instead I have hope. Hope for an eternity spent with her in heaven. It’s kind of hard to be disheartened about that especially when she was suffering so. She fought and fought and fought some more. In the end, her body gave up on her. Multiple organ failure is what they called it. I called it slowly watching my mother fade away. When the person you love is suffering, imagining them happy and whole in heaven is a blessing.
The last gift my mom gave me was in hospice. She asked to sit up and I hugged her. She looked at me so clearly and said, “I love you Lis.” She laid back down and fell asleep. She slept for that first night and into the day. My dad came to visit. I walked him to the car. I came back in carrying a silly cat that Aunt Lucy had sent for the kids, that meowed a Christmas song, and showed my brother and my husband. As I turned to sit it on the chair, she took one last breath and was gone. I had been so afraid of the end and it wasn’t horrible. It was peaceful. She mouthed something that looked like “Ok” and she was gone. That was it. Another gift from mom.
I am sad but I am also surrounded by wonderful memories and extreme silliness from my children. (Maisey got make-up from Mema for Christmas.)
I will spend each day here knowing God still has a plan for me. I know that each day that passes bring me one day closer to seeing Kyle and mom again. Death of loved ones, especially a child, does that for you. You no longer fear death. You aren’t running towards it like life doesn’t matter, but you no longer fear the day that it will happen. God’s grace does that for you. His grace and mercy are what sustain me. What a gift. First, my salvation and second my mother. I am a very blessed girl.
P.S. I had the worst time finding the words for my mom’s obituary. I wrote one but it just didn’t sound right so Dan took over and wrote this beautiful obit for mom. I love the way he described her. She supported us when we were first married. We had very little and she would always show up at just the right time with food and toilet paper. 🙂 She was never just my mom. She was always my friend and biggest supporter. She will be missed.
Marly Ann (Messerly) Traster’s Obituary
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Good Samaritan Moment
Please don’t just scroll down or skip this blog post. Please take a moment and read about Emma and her story.
Every day we are confronted with the hard.
Every day we see injustice and people hurting.
Every day we have the opportunity to help, to step up, and be a Good Samaritan.
Have you ever stopped and asked yourself, “Which type of person am I?”. The person who crosses to the other side of the street or the person who bends down low to help? As a Christian, we are called to help. We are called to share our plenty.
Each of you should look not only to your own interests, but also to the interests of others. Philippians 2:4
But if anyone has the world’s goods and sees his brother in need, yet closes his heart against him, how does God’s love abide in him? 1 John 3:17
Most days we choose to close our eyes, to not read the sad stories. We scroll right on past the story with the little girl hurting. It’s easier to watch the video of the Christmas Jammies. We share that video making it go viral, but we avoid the stories of pain not wanting to damper our moods during the holiday season.
We have tried over and over again to explain to Jasmine what Love Without Boundaries is. We try to explain it to her because it is such a big part of her story. We showed Jasmine her picture yesterday on their site where LWB was celebrating all the children who found forever families. We have explained to her that we were reading the story on their “Featured Child” post and saw her face. LWB was advocating for her because she was about to run out of time. We saw her face. We fell in love. I literally cried tears when I saw her face. We were NOT going to adopt older children. We were already matched with two little girls. Jasmine did not fit into the plans that we had made for our lives, but here we were with our hearts hurting for a little girl half way around the world.
So we show Jasmine the stories on LWB. We show her so she can understand what a miracle it is that God brought us to her. We celebrate with her the children that find families. We cry for those that are trying hard to find their forever families. We pray for the children going into surgery. We cry for the children who die before they were chosen. We talk about what the orphanage was like. We talk about what she felt like waiting. Jasmine knew what family was. She was abandoned right before her eighth birthday. Jasmine knows what it means to sit in an orphanage hurting.
Yesterday LWB shared a story of a little girl named Emma. She is four years old. She has been sitting in an orphanage with a broken leg for months. BUT she doesn’t just have a broken leg. She has a compound fracture, which means there is a bone protruding out of her leg. Let me repeat this SHE IS FOUR. You can discuss who should be caring for her. You can discuss who let her down. You can discuss it being Christmas and money is tight. You can even ignore all of this, but while you do Emma is on the side of the road hurting. Can you even fathom the pain? Let me add to this that they don’t hand out Tylenol or ibuprofen like we do here in the states. There is NO pain control. She is four and she is hurting. Someone brought this little girl’s story to LWB and begged for help. In essence, Emma is on the side of the street, hurting by no fault of her own, and people are walking by.
Have you ever read the story of the Good Samaritan? I mean really read the story? The people who should have helped, passed him on the road. The priest and the Levite passed on the other side of the road. They didn’t just not see him. They crossed to the other side. Men who should have known better. But one man stops. He not only stops, but he puts the hurting man on his donkey. He takes the injured man to the Inn and the Samaritan pays for the hurting man to stay there.
Jesus tells us to love our neighbor as ourselves. We ask for qualifiers. Who do we have to help? Who is our brother? Who is our neighbor? But Jesus says, “Which of these three do you think was a neighbor to the man who fell into the hands of robbers?” Luke 10:36
He brings it back to us. We are supposed to be the neighbor. We are supposed to help. Jasmine heard the story and said, “I want to help her mama.” Jasmine asked her brothers and sisters to give up some things for Christmas. I woke up this morning with Emma on my heart. It is 4 a.m. I’ve had a hard couple of days. I would much rather be sleeping, but I felt prompted to write this for Jasmine. She wants to help Emma. So I decided to write this blog and then I opened the LWB page, I clicked on the donate here button, and I donated in honor of Jasmine. My little girl who when asked what she wants for Christmas responds with, “I no want nothing mama. I ask for a family. I have a family. I have love.” Jasmine gets it. She’s been here seven months and she gets what is really important.
So I ask, “Who could you do the same thing for? Who doesn’t really need another tie or sweater or oven mitt? Who could you donate $20 dollars in the name of? Who could you bless with the gift of helping Emma and thereby bestow the label “Good Samaritan” on? Whose day would that make?”
I’ve seen it happen over and over again. A story really touches people and people give. Let’s do this for Emma. I mean really….look at this face. Let’s send a little Christmas cheer to a hurting girl half-way around the world. LWB – Emma’s Story
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Fear not…
Do not fear, for I am with you… – Isaiah 41:10
God is our refuge and strength, an ever-present help in trouble. – Psalm 46:1
For I know the plans I have for you… – Jeremiah 29:11
I know all these things and still I was afraid when we walked into Boston Children’s the day of surgery. Afraid to take a chance. Afraid that this day would be the last day. Afraid that I would never again wake up and see his sweet smile. Afraid that it wouldn’t go right. Afraid. Afraid. Afraid. I should not have been afraid. I know better than to be afraid. I know that He gives me a verse, about not fearing, for every day of the year. “Fear not for I am with you.” was playing over and over again in my head as we walked through those doors. I can claim God’s promises and still worry. It doesn’t not mean I don’t believe or have faith.
I have seen God show up so many times over the years that I should know better than to fear. Truly I should and in reality I do. I spent my day confessing my sin of worry over and over again. I turned it over to Him again and again. I believed these words when I said them, “Let your will be done.”
Can any one of you by worrying add a single hour to your life? – Matthew 6:27
My worry didn’t mean I wasn’t trusting his plan. My worry just meant that I know sometimes God’s plan and my plan aren’t the same. I want the happy endings, without pain and hardship. I want the beautiful stories where I can stand up and say, “Look what my God has done!”, but I have been there, smack dab in the middle of the hard. I have prayed and prayed and prayed. I have laid it all out there. I have begged and pleaded for just one more day. I’ve had faith that God would heal. I’ve believed it with my whole heart and yet my child died. The reality of picking out a little white casket is not something you soon forget.
It took me years to realize, that Kyle’s dying didn’t mean I didn’t have enough faith or that I hadn’t prayed hard enough or believed enough. It just meant my plans and God’s plans didn’t align. His will was different that my want. This is the reason it is sometimes hard for me to rejoice when others around me are hurting. Because sometimes the gates of heaven can be stormed and still the child won’t survive. Sometimes there is no happy ending. People like to say “God has big plans for this child.”, but what does that mean for the child that has died? Are you telling me God didn’t have big plans for this child too?
Dan said it best after Kyle died. He said in effect, that if you spend the rest of your life being bitter about what happened then Kyle’s life will have been in vain. Let his life change yours. Let his life make yours better. Let his life make a difference in this world and remember him with love.
When we had Hopey, I didn’t shout my praises. I thanked God. I celebrated in my heart but I didn’t share the wonders of His glory because I worried what others around me would say. Their child’s surgeries didn’t work. Some needed heart transplants. Some never went home. Some spent weeks and months waiting for their child to heal and it felt wrong for me to celebrate. Why should I have it so easy (relatively speaking) when others were hurting?
The truth of the matter is there will always be someone else who is jealous of what you have. The mother who can’t conceive is jealous of the mother who has a still birth. The mother who has a still born child is jealous of the mother whose child lives five days. The mother whose child lives five days is jealous of the mother whose child lives a year. The mother whose child has no options for surgery is jealous of the mother who has spent months in the hospital. The list goes on and on.
Years later, I realized I was wrong for not sharing Hopey’s story and decided from then on I would praise God in the good and the bad. I would not let the fears of what the world thought stop me from praising Him with all the glorious wonders He has done. I have watched miracle after miracle unfold and this time with Ben was no different. But I will tell you that even if it hadn’t gone so wonderfully, I would have praised God. I would have praised Him for letting me be Ben’s mom. I would have praised Him for every single day that I got to wake up and see Ben’s sweet smile. I would have praised him because I was that mom who wanted more than five days and this time I got so much more. Each and every day is a blessing. I have been blessed immeasurably by Ben’s life.
Ben is a sweet soul. Many people commented about him while we were in the hospital. Ben is strong and doesn’t cry very often. People comment about how brave he is. It is a good thing but at the same time it breaks your heart. He’s been through so much that he no longer cries with needle sticks. He smiles at people and he thanks them. While Ben was recovering in the CICU, he was asked to walk. Every lap around the big unit, Ben was allowed to pick out a small toy from the toy box at the end of the hall. He picked out a car each and every time he went. Finally, on the fifth time I asked him why he didn’t choose a puzzle or a book. He told me that the first car, the Batman car, was for him, but all the other cars were for his siblings. He missed the littles. The only time he cried was when he talked about his siblings. We were watching Despicable Me and Gru was reading to the three little girls and Ben sobbed. I couldn’t figure out what was wrong and he told me that it reminded him of story time with his three little sisters. That is the heart that my little Ben has. He may be five but he has an old, old soul and I have learned so much about truly living life from him.
God does have plans for my boy and only God knows the number of Ben’s days.
A person’s days are determined; you have decreed the number of his months and have set limits he cannot exceed. – Job 14:5
This time Ben’s hospitalization went so much better than I could have even hoped. Dan and I were completely blown away. Blown away by the gifts that God has bestowed. We adopted Ben after hearing “uncorrectable” by many cardiologists. We wondered if he would live long enough for us to adopt him. We brought him home and had his cath done and there was some difference of opinions on what could be done or what should be done. Someone added me to a heart group on Facebook and other heart mamas gave me HOPE. We contacted Boston Children’s and the rest is history as they say.
Ben had surgery. Ben did wonderfully. Except for a little problem with his rhythm, things went without a hitch. Ben was discharged one week after surgery. As we were leaving he was running down the hallway yelling “Momma! This feels SO GOOD!” Before surgery he couldn’t really run at all, and now he is running and laughing (even with a fresh sternotomy). Amazing.
The cardiologists and surgeon were tempted to try to close his VSD, but assumed since he is five years old, he is far past the stage where his pulmonary hypertension would be reversible. However, after seeing his great results from the arterial switch, the large gradient at his PA band, his SpO2 and his encouraging lung biopsy findings, they are now thinking that his pulmonary hypertension is a clinically reversible state. We will see how he does over the next 6-12 months and then consider taking down the PA band and closing his VSD with a fenestrated patch. We had given up hope that this was even possible, and now it looks like he might have a chance at a long life.
We went from no hope, to some hope, to great hope. We celebrate but this is no different than my time with Hopey. I still have friends that are hurting. I still have friends, that I have met through Facebook, who are wondering why the things that are happening to their child are happening. These friends have great faith and I watch the ways their lives touch others. They are a testament to God’s love for the orphan. They show what redemption and unconditional love really means. So in the midst of my rejoicing, I ask that you please continue to keep each of them in your prayers. Pray for God’s peace to surround their families. Pray for great healing. Pray that God will continue to be glorified in each of their lives. Please lift up Rini, Lizzie, Joshua, Kai, Evie, and Lily and marvel in the way God is using each of their lives.
Facebook page – Praying for Kai
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Thankful for…
A little boy that did better than anyone expected. (Today he has walked down the halls, had his chest tubes and i.v.’s taken out, and even smiled. UNBELIEVABLE!)
A little girl that we were told was deaf but can hear enough to dance to the music.
A little girl who now understands love and has learned how to give kisses.
A little boy that has blossomed and grown.
Exciting proposals and new additions to the family.
Family that becomes best friends.
People coming together to help others.
Shaved little heads that now hold enough hair for big sister to do a silly hairdo.
Siblings that get opportunities to make great memories together. (Hope loves special effects make-up. Cassie took her to be a zombie extra in a local movie.)
Big siblings that love their siblings enough to take care of them when mommy and daddy have to be gone with someone who is sick.
Husbands who support you, dream with you, love you, and make you laugh for more than 29 years.
Friends, family and others who encourage, support and pray for you.
Meeting people who have majorly changed your lives. (Maria’s Big House of Hope, New Hope Foundation and the Chapman’s daughters words that made me rethink being too old to adopt.)
Thankful, blessed, grateful, overwhelmed, and humbled – all these and more.
HAPPY THANKSGIVING everyone!
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PINK and lovin’ it!
We woke up bright and early to be at the hospital at 7 a.m. for surgery. Ben wore his Superman shoes, cape, t-shirt, coat, and hat that big sister, Cassie, had knit him. He ran to the door and said “Let’s go fly in the airplane mommy!” I was prepared for a fight but he didn’t get upset. We talked about trust and faith. We talked about what it would mean for him to feel better. I asked him if He trusted God’s plan for him and he said, “Yes! Ok, let’s go mommy!” We headed off to the hospital where he was pretty happy right up until they asked him to take off his cape.
You can’t ask SuperBenBen to take off his cape. They quickly gave him a nice dose of versed and Ben was soon happy again. A drug that removes the memory of going off to surgery without your parents and puts a smile on his face, is okay by me.
We had updates throughout the day that things were progressing as planned. At around 2:30 Dr. Del Nido came out and told us the good news. Ben had tolerated it fairly well. The were able to switch the great arteries instead of doing the Senning procedure (atrial switch), they took care of his PDA, did the pulmonary artery banding, and left his VSD alone for fear that he would go into heart failure if they fixed it. He had a fair amount of bleeding but we were expecting that with his platelets being in the low 20’s.
Many people have asked why we went to Boston. It has been a very hard decision. Most children with Ben’s defect that are born in the US get fixed at 7 days of age. There aren’t a lot of 5 year olds with uncorrected TGA out there. We chose to go to a place with the highest volume of kids that are older getting repaired. There are quite a few good hospitals with a high volume of heart surgeries across the US. With Ben’s repair, it came down to CHOP (Children’s Hospital of Philadelphia) and Boston. Dr. DelNido did the best job of answering our questions and Dr. Marx was very kind towards our family and our situation. So off to Boston we went.
This afternoon we are praising a God that would give Benjamin a hope and a future. We are thankful for every day we have had with this little guy. He truly is the sweetest soul. ‘Who knows what the future will hold for our little guy but we have now given him the best possible hope for a longer life.
He will be sedated for at least 48 hours and then they will start waking him up and see what happens.
In just a little bit, I will post a picture on this post of his pink fingers. His oxygen saturations were 100% for a while. I’m still waiting to be let into the PICU, but as soon as I see those fingers I will be doing a happy dance and I will share that joy and the picture with you.
Thanks again for all the encouragement and prayers! We are truly blessed to have so many prayer warriors on our side.
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Tomorrow is filled with Hope
This whole trip is about hope. Hope for Ben to be pinker (his sats are in the 65-70 range). Hope for a longer life, a healthier life. Hope when we had none. Hope is a beautiful thing.
We had a horrible flight from Chicago to Boston. A flight that was bad enough that I started writing a long text to Cassie telling all the kids how much I loved them. I was determined to send it before I died. There were no announcements from the cockpit. We were in the very back row and the stewardesses were saying things like, “Why are we going back up? Why is this taking so long? Why are we still over the water? This is the worst flight I have ever been on.” You know the usual nice comforting words you are wanting to hear when you frightened. And to top everything off in a plane that was eerily quiet, there were the lovely sounds of vomiting all over the place. It was quite the ride.
I have never been so happy to hear the words, “Welcome to Boston.” Ben on the other hand walked out of the plane like he was going to a _______. I could not for the life of me remember what this saying is so I asked Dan to look it up while I continued to type. What is the phrase he gives me to use? “He came off the plane slower than a one-legged dog on tranquilizers.” I need a book on phrases, that’s all I’m saying. And yes, I have chosen to be married to this man for 29 years. We celebrated our anniversary by flying to Boston. We truly know how to have a good time.
Ben drug his feet and slowly went down the aisle. The stewardesses asked if he was okay. They had seen him enter the plane, skipping down the aisle, telling everyone down all 37 rows, “Hello”, especially the girl in row 21 who was wearing a Superman t-shirt. I told them he didn’t want to be in Boston because he was having heart surgery. They said they’d pray for him and he got a little boost in his step.
He did pretty well the first night. He was doing great at pre-op until anesthesia came in with their scrubs on. Then it was all bets off. He just kept saying, “Hey, let’s go get on that plane. That would be fun. Let’s go home. I miss the kids.” and mommy’s heart broke.
I am thankful for the chance for Ben to get healthier. I feel blessed that there is hope and that God has provided so wonderfully for him. It is still hard though. But to ease my mama heart, we have had numerous “God winks” through the whole trip.
We checked into the hotel and they handed Ben a book called “Where’s Hope?” and a little bear named Hope. He was thrilled and since this whole trip is about Hope, I thought that was very fitting.
Remember the little girl Paige we saw on our last trip? Well, we even rode the elevator with her. What are the odds of that?
We have had people, who I barely know, tell us that they are praying for Ben. I am always humbled and blown away by this fact. The number of people who care about our children just amazes me. Miss Deb, the children’s homeschool advisor and family friend for over 10 years now, celebrates her birthday tomorrow. What does her Facebook post ask for? It asked that if you were going to wish her a happy birthday she would be thankful but she asked everyone to say a prayer for little Ben too. Friends that we just met on our last trip to Boston, friends we have never met except through Facebook, and friends that we have had for a long time, have shared Ben’s story and asked for prayers. These are the kind of friends that we have. The kind of people who care and pray and comfort us when our hearts are fretful.
I’m not worried because I believe Ben is in the best hands and I believe that God has more in store for my little guy, but I am also at peace knowing no matter what happens Ben will be healed. I will see him again. God is good and I trust His plan. I know this plan is perfect. There is great peace in giving up control (which I only delusionally thought I had) and trusting in God’s plan no matter what it may be. The peace you get when you finally just follow God’s lead is amazing.
But it doesn’t mean your heart doesn’t hurt. It hurts when he begs to go home. It hurt when I was scrubbing his little chest with the pre-surgery scrub knowing that this would be the last time I would see it without a big scar. It hurts knowing what he will be going through. There will be pain. There will be fear. There will be anger. Those all hurt a mama’s heart because we always want to make things better and we know a kiss and a band-aid isn’t going to fix this one.
We have been told that they are taking the more conservative route. They will be doing the arterial switch with pulmonary artery banding. They are going to leave the VSD alone because they are worried about it causing heart failure. We have to be at the hospital at 7. They said it will take 1 to 1 and 1/2 hours to get him ready and 5 hours for the surgery and then they will close him and take him to the PICU. They are planning on keeping him completely sedated for 3-4 days. They have told us to plan on 10 days if everything goes perfectly.
Thank you again for all the prayers and well wishes. Thank you for being part of our families story. It truly is humbling and overwhelming and so comforting during this time.
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Mama, you can love more!
Those are the words that Jasmine said to me one evening as we were getting ready for bed. I was curious as to how I could love more and asked her about it. Jasmine then informed me that “Yes, you can love more sisters.” This brought a smile to my face and being curious I asked her, “How many more sisters could I love Jasmine?” Oh, two mei mei and two jie jie mama. I have room my room.” I smiled at her, loving her for her big heart and said, “Could we wait until the kids’ surgeries are done Jasmine? Could we take some time and pray about it?”. To which she replied, “Oh yes mama, I pray.”
This story very accurately shows Jasmine’s heart. From the moment we got her, it has been almost all smiles. Her smile lights up the room. We worried about her because she didn’t seem to be sad about leaving the orphanage. Shouldn’t she have been sad about leaving her friends? The language barrier makes it difficult to figure out what she was really feeling so we worried we might be missing something. Jasmine was told by the orphanage workers and even our guides to be a good girl, to not make any problems, to be happy, to not be naughty, etc. Over and over again people said these words to her. We actually made it a point to have the guide tell her that no matter what happened we would love her. No matter how sick she got, no matter how naughty she was, no matter what….we would always love her and she would always have a home.
While in China, we asked our many different guides to ask her if she had any questions for us. Over and over again she would shake her head no. Dan and I were curious as to why she didn’t question anything. We’d ask her if she wanted to know about our house or our family and she would just say “No!”. It wasn’t until the very last day that she said she had a question. We knew it was going to be a tough question because as soon as Jasmine asked it our guide started to cry. Jasmine’s question was “Can anyone take me from my family when we get to America?” That is the only question she had. We wondered why she would ask that? What had happened when she was 7? Did her family abandon her? Did an elder family member decide she was cursed, take her, and leave her somewhere? Did they abandon her for medical reasons?
Imagine being almost 14 years old, completely unable to care for yourself, and trusting this family, whom you’ve just met, to take you to another country. I can’t even imagine. Jasmine had to trust us for everything right from the beginning. Cassie and I carried her to the restroom. We had to help her completely with all her cares. Try to picture that. One day you are with your friends and all that you have known for the past 6 years and the next day you are in a hotel room with total strangers, trusting them for food and for care. You can’t just run away if things are bad. You don’t speak their language. You spend every moment relying on these strangers. They carry you every where. They pick your food. They dress you. They bathe you. You can not even sit up in bed without their help. You are at their mercy.
Yet, Jasmine has always had that smile on her face. Jasmine understands silly which was a good thing. Cassie and I do silly very well. We sang in the bathroom. We danced. We did whatever we could to make it silly and not uncomfortable. We used a hodgepodge of Mandarin, English, signs, and over-exaggerated faces and hand movements to communicate. Yet, she went along with everything. She sang when she could. She danced. She would just look at you and smile that 100 watt smile. All the awkward I had feared never came to be.
Jasmine was extremely quiet. She didn’t make any loud noises. She hung her head when we were in public. Although, I had wanted to take her shopping and out to the park while we were in China, we ended up spending most of our time in the hotel room. It was just so hard to take her anywhere and not just because things weren’t handicapped accessible. Many of the people in China look at disabilities as a curse. They stare. They come right up into your space and will say things to you. We would be eating meals and people would just shout stuff at her and she would hang her head. Whenever we were waiting for the van, we would build a wall of people around her to protect her, people came over and just stared, sometimes for 20 or more minutes and still, she smiled.
I couldn’t wait to bring her to America where she might be stared at, but people would not treat her like an outcast. Cassie took her to Village Inn for her first meal out and the lady wanted to know what Jasmine wanted to drink. The waitress got down at Jasmine’s level and Jasmine lowered her head. The lady asked her if she wanted water, juice or milk. Cassie said Jasmine’s face just lit up. She raised her head and got the biggest smile on her face. That was the beginning of her understanding that things were going to be different.
Jasmine shares a room with Gracie. They have become very good friends. I find them huddled under the covers at midnight watching Chinese soap operas on You-tube. They communicate with Google translate, and a hodgepodge of all the other languages used in this house. Gracie and Jasmine have gotten very good at communicating with each other. Jasmine has opened up and started sharing things with Gracie.
Things like:
My mama and my baba (bio parents) didn’t love me, but my mama and my daddy (Dan and I) love me very much! On Facebook I posted this story and wrote that her parents didn’t like her. Dan asked me why I wrote like instead of love. I thought about it for a long time and realized it was just too hurtful to put those words on paper. What child should ever believe that their parents don’t love them? How is that even possible?
My parents started to not like me when I was about Mei Mei’s age. When she was a toddler, she understood that her parents had an issue with her for some reason. She probably started getting clumsy and losing motor skills around that time. As I’ve said before, it’s hard enough being a girl in China, but being a disabled girl is a bigger issue yet.
I don’t want to be sick like nana. We know that Jasmine must understand in her heart that what she has isn’t fixable. She cries and doesn’t want to be ill like my mom who has spent the last 45 days in the hospital.
My friends and I used to sneak the little ones into our bed when they were scared at night. Jasmine shared a room with two of her friends. We asked about them but they are not available for adoption. I think this story shows how Jasmine and her two friends were the big sisters of the orphanage caring for the little ones. (On a brighter note, we just received notice that the “little girl in pink” that I wrote about when we traveled to China is now being adopted.) Jasmine talked of hiding the little ones in her bed when it stormed. Jasmine is a very good big sister and I know she was loved by many of the little ones in the orphanage.
My friends and I were often hungry. We would get food two times a day.
I shared before the story of how we brought a summer outfit and a fall outfit along with a light coat for every one of the children in Jasmine’s orphanage. When we showed her, she asked if we could go back to her orphanage and hand out the clothing. We drove the five hours from our hotel to her orphanage just so she could do this and it was wonderful. It was like Christmas morning. Jasmine handed out clothing to all the little kids and she had a great time.
Jasmine is a sweet, sweet girl. I keep waiting for those usual teenage behaviors but so far they haven’t shown up. Jasmine has, however, cried. I remember thinking that was a huge step forward. She didn’t feel like she needed to keep up this facade. She trusted us enough to let her guard down and let her emotions show.
The times she has cried have broken my heart though.
She cried, sobbing tears, when we were at her eye appointment. They were showing her letters on the screen and she was so proud of herself. All of a sudden, she didn’t know a letter. They handed her a card with the letter H and three other letters and asked her to point to the right one. She didn’t know and she cried. When we asked her why she was upset, she said, “I was scared because I didn’t know the letter.” I don’t know what has happened in her life that would bring sobbing tears from not knowing a letter but it can’t be good.
She cried when we took her to get fitted for her wheelchair. They were discussing needing a tilt mechanism on the chair and the doctor said, “for when she gets worse…” Jasmine understood that and cried. I think she knows in her heart that it isn’t going to go away, but I hate taking that dream from her. How do you explain to this child that she will progressively get worse. That she will lose more and more motor control. That someday she will die from this disease. I hate this.
We went to China thinking she had a cyst on her back that made her a paraplegic. We thought we were going to go get a teenager and teach her as much as we could, send her to college and watch her live these big, grand dreams that she couldn’t live in China. Instead we will slowly watch her die. I hate that, but I hate the thought of her spending her last days in an institution even more. I hate the thought of her being alone even more. I’m not angry that we didn’t know her diagnosis because truth be told, I most likely would have said no and Jasmine deserves the love of a family.
She cried when she told Gracie that her friends are often hungry. Which brings me to a big part of why I am writing this post. Love Without Boundaries just started a nutrition program at Jasmine’s orphanage. We were excited to see this and we have started sending a monthly amount of $100 to help out. This brought the biggest smile to her face. Then Gracie asked what if we did the same thing for Jasmine that we did for her during Lent? What if we could show Jasmine how much she has raised to help her friends? If Jasmine’s story or her smile has touched your heart, won’t you consider sending any amount to this fund. We asked LWB set up an account, much like Gracie’s, so she can watch the amount go up. We want her to feel like she is doing something tangible to help her friends.
Please won’t you consider helping Jasmine raise money to feed her friends. Our goal is to match the $100 per month that we have already pledged for a total of $1,200 raised during the next 6 weeks. We have been assured that this would be a huge help to the orphanage. The links are listed below. Thank you in advance for praying about this need.
or you can donate through PayPal
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