Archive for the ‘Grace’ Category
Hi my name is Grace and I’m 10 years old. I’m one out of 14 children. I never dreamed that I was going to have 13 siblings but I am happy. I have lupus and there’s 10 other siblings with different sicknesses. I know some people think that adopting is crazy but I LOVE it!
Sometimes it brings sadness and sometimes happiness. Don’t be sad if they don’t adjust to you right away. I learned that the hard way. My mom and dad adopted the first two Ben and Maisey. They were scared. They didn’t adjust to me right away. I was so confused by that because I was only six years old. I didn’t know how to respond to them because they were in an orphanage where they got hurt and people were just mean and cruel to them. They were afraid for a little bit but they love to play. They left my little sister to die. I don’t understand because she is so happy and I’m just so happy that she’s my little sister. Ben Ben was very little and very sick and he wanted to eat all the time. He was so blue.
It was one or two years later and we were going to adopt Evie and Eli and Laney and Jasmine. Jasmine was going to be 14. When you turn 14 in China and you’re in a orphanage you get sent to an institution. But when I learned what an institution was I did not want her to go to one because there is people who aren’t nice and she’s in a wheelchair that would just make it so much harder for her so I gave up dance and tumbling just so we could get her. Lainey who’s gotten so far she used to just rage all day but now she’s happy. She plays. She says I love you mom and she says I love you Dad. She said hey Lainey.
Evie she was really blue but after her heart surgery she called herself a princess. Now she only responds to Princess Evie and she’s happy. Eli has a heart defect too but he was as blue as Evie. He is silly and likes to dance.
Two years later my mom and dad adopted Elyse and Max. Max has no ears at all. Elyse is in a wheelchair. Elyse was not in orphanage her whole life. Elyse told me she had a foster mom and dad but her foster dad was mean and drank bad stuff and he hit her. That made me sad. I like having a sister my own age. We share a room. Max is very silly and he loves to dance even though he can’t really hear the music.
All of these children that I’m talking about are my Chinese siblings I have one more sibling who was adopted Hope who is 16 and she was adopted in the US. I love Hope so much. I love my family. Someday I am going to adopt 20 kids too.
Our little butterfly turned 10 years old on the 23rd.
Where has the time gone?
Gracie has had an eventful year.
She got what she had been praying for since we started the adoption process….
A sister who was also 9.
They do their makeup and stay up late talking and laughing.
They sometimes argue but mostly just have fun hanging out together.
Gracie dreams of adopting 20 children
being a neonatologist like daddy
going to China and caring for babies at New Hope.
She has always had a faith that was older than her years.
So I have no doubt God will use her in one of these ways.
She was diagnosed with lupus over 3 years ago.
She has been in remission now for over a year.
We are hoping to have some wonderful news in May that would allow her to stop taking her chemo drugs.
Gracie came into this world five weeks early by emergency c-section.
She was given the name Grace because we knew she was only here by God’s grace.
She is such a blessing.
She is caring and kind.
She is the best big sister.
She has a heart for orphans and for those less fortunate.
Jasmine and Gracie love the idea that even though they are young, they can make a difference.
They spend their time dreaming of their next big way to help.
I love that about them.
They know they can make a difference.
What an empowering thing!
I can’t wait to see what the future holds for Gracie.
She knows at any time she can relapse and that life isn’t always guaranteed so she lives it to the fullest.
We could all learn something from this little girl.
I know that I already have!
Happy birthday sweet butterfly!
It all started with tears over the fact that she didn’t want to have a tea party with Elyse and Gracie. Somehow I knew it wasn’t about the tea party. Jasmine is usually easy going. It was unusual for her to balk about something so trivial. I asked her if Elyse had said anything to upset her and she screamed, “This is boring. I don’t want to do it.”
I let her know she didn’t have to play with the other girls. I let her know that she could just sit in the room and watch them then but it would be more fun for her to participate. She still didn’t budge on her position and I left them alone in their bedroom.
About five minutes later Gracie came out saying Jasmine was sobbing. I tried to get Jasmine to talk. Cassie tried. Gracie tried. None of us had any luck. I told her I knew that there was something else going on. I asked her to e-mail me when she felt ready to talk. She told me there was nothing wrong and I gave her some more time to calm down.
The sobbing continued. We continued to try and talk to her. Jasmine yelled, “There is nothing wrong. I am NOT sad! I am NOT mad!” as the tears continued to roll down her face.
This lasted three hours.
Three hours folks and she kept insisting it was because she didn’t want to have a boring tea party.
We’ve had one other huge battle like this one and that battle was over her saying she was stupid. This was admittedly the dumbest fight ever in the history of fights. She refused to back down about saying she was stupid. I told her she knows three languages. She is doing amazing in school. She is one very bright, insightful girl and I would not let her call herself stupid. The fight continued. She yelled. She threw her pencil. She cried and cried and cried all over the fact that I refused to let her call herself stupid.
I informed her that she could either say, “I am NOT stupid or I was going to make her write it 50 times.” She still refused. I got out the paper and the pencil. She wrote her sentences but she refused to write the NOT. This part of the disagreement went on for a couple hours. I tried to let her calm down. I had Cassie talk to her. I had Dan talk to her. I had Hope talk to her. She refused to say, “I am not stupid.” and the tears continued to fall.
See we’ve been here before. I knew the fight wasn’t about the tea party just as much as the other fight wasn’t about her admitting she isn’t stupid. It was about fear. It was about having so many emotions over so many confusing thoughts that the simplest thing set her off. It was safe to be mad about a tea party. It was not safe to admit your fears.
I told her that she had to stop and calm down. I wasn’t going to argue with her. She needed a shower so I gave her time alone in the shower so she could think. She refused to talk. I had already told her she had two choices.
1.) To let me know what was really wrong.
2.) To go to bed.
She chose to go to bed. I couldn’t believe it. I gave her the options and now I had to follow through. It was 6:30 p.m. and she chose to go to bed. I gave her ten chances to change her mind. I gave her her I-pad in case she changed her mind. I told her she could let me know just a little bit at anytime and we would talk but that she wasn’t allowed to not tell me the truth. She couldn’t keep saying “I’m not mad. I’m not sad. She could ask to talk about it later but she could not keep lying to me about there being nothing wrong.”
Three hours later I get this e-mail.
“Are you sad adoption me?”
Am I sad that I adopted her? Oh my heart.
“I do wrong. Do you think I’m stupid?”
“If one day you do not want me, I really do not want lose the family.”
“Because I know what will become of my foture.”
And then she asked me to come to her room to talk.
It wasn’t about the tea party. It was about Elyse mentioning that the nannies told her that she could come to America and be healed. The nannies had told Jasmine the same thing. We were about six months in when Jasmine had enough English under her belt to ask us when she would get the surgery that would let her walk. We had the horrible task of letting her know that there was nothing that could be done. You can’t fix muscular dystrophy. We had to break her heart and now we were going to have to break Elyse’s. I told Jasmine not to say anything to Elyse because we haven’t seen a doctor yet. Jasmine doesn’t need to be the bearer of bad news that could wait for another day.
But all of her discussions with Elyse brought up the fears that she had before.
Jasmine told me that she was worried that she would get too heavy and I would take her back to the orphanage.
Because it has happened to her before.
Jasmine let me know that she was afraid about having her surgery on the 13th because she didn’t want to wake up in the hospital alone.
Because it has happened to her before.
Jasmine was worried that I would decide that she was no longer worth caring for.
Because it has happened before.
It wasn’t about a tea party. It was about her wanting a family. It was about her wanting to walk. It was about her wishing she could dream about one day growing up, falling in love, and having a family of her own.
I’m sharing this story today because I want other parents who have adopted or are choosing to adopt an older child to remember not to take it personally and to remember the trivial fights usually are about something much more. It’s not about wanting to eat late at night. It’s about them testing you to see if you will feed them and love them. It’s not so much about control as it is about fear. Fear that you don’t love them enough. Fear that they won’t get food. Fear that this whole family thing isn’t going to work out.
I can understand this. For years when Dan and I met, I would test him. I would push him. I would bait him. I would argue with him. Why? Because I didn’t believe someone could truly love me. My dad and my mom divorced when I was 10 and then shortly after that I was sexually abused, for a whole summer, by an older trusted friend. It played with my head and my self worth. It made me believe that men would just hurt and that I had no worth. This took place over about six months. Now imagine if your whole life had been one of not feeling loved or worthy. What if they made you believe that you are so bad that if you ever let anyone know the real you, they would return you to the orphanage? How much would you test? How much time would you need to heal?
Dan finally made me see that I could trust him and live each day happy or I could spend my whole life assuming he would leave and be miserable. I had to make the choice. These kids are in the same boat. They have to make that choice but the first couple of years are just trying to figure it out. They don’t have the language or the maturity to make that choice. It’s all about survival. If they learned to survive with manipulation, then they will manipulate. If they learned to survive by withdrawing, then they will withdraw. It takes time to let go of the fear and the anger.
So it’s up to us, the supposed grownups, to remember it has nothing to do with us. It has to do with fear and we have to remember who the author of fear is. It isn’t God. God is all about hope and redemption. Satan whispers and people doubt. Please remember that the next time you are in the heat of the moment. Take a step back. It’s not about the tea party or them loving you. It’s about fear that they will one day lose this thing that they can’t even admit that they want.
I stood outside in the corner of our walking path and cried tears today.
Maybe it’s because the talk I gave this weekend brought so many memories to mind. Maybe it’s because I wish my mama could have been there and I miss her so much. Maybe it’s because we are waiting to hear from sweet Kelly. Maybe it’s because I keep seeing picture after picture on Facebook of children just wanting a family. Maybe it’s because the world is so unfair to so many children and I can do so little.
For whatever reason, the tears came but they didn’t diminish the wonderfulness of what my eyes saw. Happy children playing outside in our big backyard. I remember a couple of years ago when Dan and I were regretting buying the acreage, with all the upkeep and mowing. Regretting the remodeling we did on the house and having spent money that we would have never spent knowing what we know today. My brother, my son, and I (but mostly my brother) put in a 600 foot walking path in our middle acre. It wasn’t getting much use. We hadn’t done the tree and flower planting that we should have. We wondered if God was asking us to sell the house. But selling just didn’t seem right so we stayed and now we know why.
Now the yard is a giant play place where I get to see the little girl who ten short months ago sat on a floor in China raging, pulling out her hair, so unhappy, with us wondering if she could ever be happy and feel loved, run across the open ground with a look of pure joy on her face as the wind whips her hair.
I get to see the little girl who weighed six pounds at six months, thrive! The little girl presented to us as deaf and unworthy, blossom and grow and blow out of the sky any of the limitations I thought she might have. She is so much more than any of the descriptions on paper. She is a fighter and loves with all her heart. She is a beautiful spirit in a tiny, strong, little body. She is smart and pretty and helpful and such a little mama.
And how can I look at Jasmine and not think of where she would be? I watch her speed around the path, hair flowing in the wind, a huge smile on her face, enjoying every moment of freedom that her hot pink powered chair brings her. I want to say slow down and then I remember all the limitations others have placed on her, all the pain, the wounds and scars, and I cheer her on instead.
I look at little Miss Evie. The girl they told us only had a few months left. I’ve had ten months with this beautiful soul. Ten months of love and laughter. There have been tears, fear, and restless nights, but to watch her run and play, to be allowed to be a part of all that is the miracle of her…..I am completely and utterly blown away and so undeserving.
Which is why the tears flowed. Why am I so blessed? Why should I be allowed to call these children mine?
I get to spend time flying kites, getting hugs, and listening to their sweet laughter roll across the wind.
Jasmine is free and happy. Secure in the love of her family.
My older children are happy. We’ve had much to celebrate.
Benjamin! Where do I even start with Benjamin? Before his surgery he couldn’t run around our sectional without being winded and now he is doing 5, 6, 7, or more laps around the path. You can hear his laughter and his little bell ringing around every corner. Every time he goes past me he yells, “This is so fun mama!” His little legs pedal faster and faster as he zips around the path trying to catch Jasmine and Gracie.
The joy on their faces is unmistakable. Maisey and Ben’s bond grows deeper and stronger with every day that passes.
Then there is the little guy. He is this tiny bundle of rambunctiousness that is just so much FUN! I don’t know what we will find out in May but he is so worth it all. I can’t even explain what it is to watch him run and play. He is the perfect little bundle of boy and my heart overflows with love for him.
Little Lainey secure enough to fall asleep in the sun.
Little Evie running to my arms.
Blessed to have spent over 30 years with the love of my life who shares my dreams.
Standing in awe of the little bundle that started this whole adoption journey. A baby. A gift straight out of no where. Who gets gifts such as these?
Others ask us how can you do this? Aren’t you tired? What were you thinking? What am I thinking?
That is what I am thinking as I stand there with the tears flowing down my cheeks. Blessed at this family that God has made. Completely and utterly humbled by the God who would allow me such a blessing just because I was obedient to His call. What a gift to be given. How do I do this? How could I not?
My sweet little butterfly.
Turns 9 today.
Where has the time gone?
Gracie is the big sister who plans picnics on the kitchen floor.
Turns big boxes into boats.
She is the first to play pretend.
The first to lend a helping hand.
She is the first to cry when a story is sad.
She is the sister who will bundle everyone up to play in the snow.
She is an old soul. I never quite knew what that meant until I had my Gracie.
She has a faith that is amazing.
She believes in God with all her heart.
She prays and talks to God like He is an old friend.
When she overheard the doctor say she may lose her hair with chemo,
she got the idea to donate it instead.
When she heard them talk about the heavy duty chemo they used maybe causing sterility,
she said she’d just adopt then.
She believes in trying to help others.
She is the child who will give away her toys to others.
She believes in saving the world one child at a time.
Jasmine and Gracie came to us with their idea to adopt more. They share the biggest room in the house.
We had to give Jasmine the master bedroom so she had enough room for the lift and after taking out the bathtub there is enough room for her to maneuver in the bathroom.
They measured and figured out what bunkbeds would work best. They said they’d give up their allowance. They would do whatever it takes to bring more sisters home. They would clean, they would give up what they could, they would share everything they had.
Just please can we adopt again? (You try saying no to these two faces.)
She is light years ahead of where I was at her age.
She loves the lessons learned at Women of Faith. She loves to sing out her praises to God as loud as she can. I’m so glad she got to go this year with my mom. Nana was always very special to Gracie and it has been a hard year having to say good-bye.
She shops all year long for Operation Christmas Child.
I had a tubal reversal at the age of 40 to have Gracie. Both Dan and I felt God talking loud and clear that we were to have another child. We believed in adoption, having already adopted Hope, so having a reversal didn’t make much sense but we felt that was what we were being asked to do. If there is anything we have learned through our lives, it’s too be obedient to the call of God.
The doctor told me my odds were slim. I got pregnant the very first month. Because I was over 40, they did routine weekly ultrasounds. At our 35 week appointment, they found that I had a vessel rupture. I wasn’t having any symptoms – no contractions, or pain, nothing! Gracie was surrounded by blood. They had to get her out right away. After she was born, her doctor said, “Now that I know she is okay I can say that is the most blood I have ever seen and have the baby come out alive.”
She entered the world and we heard “by the grace of God” over and over again. That is how she received her name.
We had wanted to have another child after Gracie. Dr. Neil asked if I wanted a tubal again and I said, “Yes.” He said, “That’s good because one side doesn’t even look connected and the other is so scarred I don’t know how you got pregnant.”
Dan and I just smiled at each other because we knew.
Every time I look at her sweet face I know that I was given a gift. Having lost a son, I know that isn’t always how it works.
I do believe God has a wonderful plan for Gracie. I know that with all my heart. She is a special, special little girl.
When she became sick and just couldn’t get better, we had tests run. They thought it was leukemia, but it ended up being lupus. Who knew six year olds could get lupus? Gracie never asked, “Why me?” She understands that sometimes life isn’t fair. She said, “She didn’t understand God’s plan, but she would trust God’s plan.” This coming from a six year old. See what I mean? She’s an old soul.
I don’t know what God’s plans are for my girl or where He will lead her, but I do know that I am blessed each and every day to be able to say that I am Gracie’s mommy. It’s an honor I don’t take lightly.
Happy birthday sweet Gracie girl! Your daddy and mommy love you very, very much!!!
This Sunday my little Gracie turns 9.
It’s been two and a half years since we had the scare of our lives
from first going for a bone marrow biopsy to check for leukemia,
to not knowing what was going on,
to more labs and waiting and even more labs,
to seeing the butterfly rash and her father knowing exactly what she had.
We then had a kidney biopsy because the lupus had affected her kidneys.
She ended up with class 4/5 glomerulonephritis.
Gracie has been on many meds for these past couple years.
She’s endured chemotherapy
and they weren’t sure if she would lose her hair or not.
She didn’t want her hair to just go to waste so she donated it.
That’s the kind of heart my Gracie has.
and from that my friend started a “Hats for Gracie” page on Facebook
to lift my little girl’s spirits.
It was the best thing for her during those hard times.
She would run to the computer and check how many people were praying for her.
We don’t update much any more
but it used to bring Gracie such joy.
Because of the joy it brought her, my favor is this….
if you have a Facebook account and haven’t already done so
won’t you please go to her page and like it.
You have to click on the box that says “LIKE”
It looks like this.
Gracie’s heart is a beautiful thing.
She has been through a lot in her short little life.
In the past couple of years, she has lost a great grandma, her gramp gramps, a great aunt and her beloved Papa. And just two months ago she lost my mom, her step grandpa, and her great grandfather.
That is a lot of loss for one little girl.
The past couple months have been so hard on her.
She misses her nana and she so wanted nana to be at Zach’s wedding.
Gracie is an old soul and has a faith in God that is amazing!
She wanted to adopt and is thrilled that she is no longer the baby and there are five more little ones below her. How many children would do that?
She is the one who willingly gives up her time during the day for Jasmine.
Gracie is at Jasmine’s beck and call because Jasmine can do very little for herself
and yet Gracie rarely complains.
It’s Grace and Jasmine that are asking us to adopt more – six more if they have their way.
They want to share their room with six more girls.
They want to share their toys, their clothes, anything they own.
They have offered their allowance to help with the cost of adopting.
Please won’t you help me make her birthday extra special?
I would love to get her over 700 and that is only 20 more “likes”
She has always loved her Facebook page.
Thank you so much for considering this
and if you have already liked the Hats for Gracie page.
THANK YOU for brightening my little girl’s life on a daily basis!
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!
Evie is extubated and resting now. It was a very long morning and afternoon where she was uncomfortable and they couldn’t control her pain. This is the first time she has rested comfortably all day long. Counting our blessings one medicine and one tube removed at a time.
Dan and I were just talking about how at this time last night (7pm), they were rushing her down for an emergency heart cath with ECMO on standby and tonight she is happy and resting and on her way to healing. Can’t get much more blessed than that.
Yesterday I wrote about some pictures that a friend of Cassie’s took. She came over with her camera and just played with the kids in the backyard. I picked 20 of my favorites to show you. Some good news is always in order. I have been blessed 12 times over….
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10 NIV
I’ve been hanging on tight to the “do not fear” portion of this verse for the last couple of weeks.
I will apologize ahead of time that this post is long. I’ve chosen to post updates on everyone in one blog. The good news is each paragraph is a story in itself so you can stop and come back and it won’t even matter. Plus, if you leave and come back it adds another visit to my blog and I am really close to going over the 20,000 visit mark for the year. Isn’t that unbelievable? I sometimes forget that there are those, that I don’t even know personally, following our story. I update for my family and friends who I know are praying for our family and for each of my children and pray that maybe, just maybe, I will reach someone I don’t know and they will be encouraged to do more. They will be encouraged to follow where God leads them, even if they are afraid. It just seems amazing to me that our story touches others. To me, it is just our life. It’s just my normal. It can be really, really loud, and really, really busy, but at the end of the day we are just a family.
If you are one of my readers, which I guess you’d be if you are reading this, thank you. Truly thank you. Thank you for caring about my children. Thank you for covering our family in prayer. As Christians we are commanded to encourage each other and lift up each other. You do that for me with your comments. You do that every time I hear about someone praying for my children. What a blessing. It goes without saying that the title of my blog says it all….I am SERIOUSLY blessed! Thank you!
Poor Benjamin had been feeling so bad. He was admitted to the hospital to receive IVIG because his platelets dropped to 12,000. He had a severe reaction to the IVIG, his temp jumped to 105.1 and his heart rate was well over 190. When your heart is as overworked as Benjamin’s is already, a very high heart rate for an extended period of time is not a good thing. During his hospital stay, I asked him, “Benjamin, do you know that God loves you?” and he responded, “Yes!” and then I said, “Benjamin, do you trust me?” and he said, “Yes mama!” as he snuggled in closer he said, “I’ll be brave.” He really is the bravest kid. I wish I had the words to properly convey how humbling and overwhelming it is to watch your child truly trust God. When said child is only 4, it is just mind blowing. Benjamin is sweet and gentle and so loving. Benjamin can not hear sirens without requesting that everyone pray, well commanding it is more like it. When you pray, you have to pray for the person who is hurting, for their family, for the people driving, and for their safety. You can’t leave anyone out.
We had been home for a couple days and Ben was still whiny and not eating. His dentist decided it was time to take out two molars before he has surgery. One of them was infected and yet Ben wouldn’t really complain. Benjamin’s surgery is scheduled for August 13th at Mayo. We have to check in early the morning of the 11th to check his platelets and see what needs to be done to get him ready for surgery. I am nervous about this surgery, but we know it is his only hope of being pinker and extending his life. We are trusting in God’s plan and His timing. We are putting Benjamin in His hands and praying for the best. Plus, Benjamin has decided that he is SuperBen Ben and he can handle anything!
Plus, Gracie has informed me that “it’s a pretty good day for a miracle”. So we are going to go with that. It does seem like a pretty good day for a miracle! 🙂
She has been such a huge help this summer. She was invaluable in China and continues to be so. She allows her mama some sleep, some much needed sleep. I am always amazed at how much she has learned from our life. She is so far ahead in her walk with Christ than I was at her age. Here is her latest post that shows exactly what I’m talking about. Things I Have Learned
The boy turned 25. How is that even possible? I’m barely over 25. Although, I suppose that makes the fact that I just had my 30th high school reunion a little improbable too. 🙂 Codey has adjusted well to all his siblings. He doesn’t seem to mind the increased decibels in the house. It has gone remarkably well. Better than I could have even hoped for. He has been healthy and he is a pretty happy guy.
We now know why it said that he was “charming and handsome” throughout his papers from the orphanage. This boy will charm the socks off you. He is sweet and the faces he makes just crack me up. Last night we hit a wonderful milestone and he melted my heart a little more. There are many habits that children come with, who are raised in an institution, one of them is not wanting to be held or rocked. Some, not all, children have this. They are so used to being alone. Comforting themselves. Not crying out when they are in pain because no one responds. It’s just very, very sad. Last night Eli had a nightmare and he let me rock him. He let me hold him and comfort him and he said, “Mama, wuv you.” Those moments are to be treasured. Those moments of complete trust and the understanding that you are there for them. Little tiny steps but every time they happen they just warm your heart.
This little girl just continues to improve every single day. She has gained about a pound a week and weighs in at 20 pounds now. She is sitting, crawling all over, pulling herself up to standing. She is singing and saying new words every day. Little Evie’s heart catherization is scheduled for August 6th at the U of I Hospitals. I am soooooo not ready for this, but she is getting bluer and bluer. It needs to be done. I love, love, LOVE this little girl so much! She has a personality that is just so big! She steals people’s hearts in a matter of minutes when they meet her. They are hoping to place a stent in her PDA and increase the blood flow to her very small pulmonary arteries. Their hope is with increased blood flow, maybe her arteries will grow. I’ve had others write to me, to encourage us, with stories telling how this has worked for their children. Praying that there is hope for our little Evie Faith. Her middle name says it all – we have proceeded in faith and continue to press on in faith.
Faith makes things possible NOT easy. Have you heard that saying before? That’s where I am right now. It’s easy to love her. It’s easy to have your heart completely stolen by her. It’s easy to thank God for the gift of being her mama. It’s hard to know that I may not ever get to have a birthday cake with her. How silly is that? But not being able to celebrate a milestone with her makes me cry. It really is the little things in life that matter. It’s hard to think about taking this chance, even though the percentage is low that she won’t make it through the cath, the truth is she might not. Am I strong enough to take this chance? How strong is my faith? Can I truly just turn it over? Fear Not! Fear NOT! FEAR NOT! Eyes directly on the Lord and counting each and every blessed day I get to spend with her.
She just got a great report from the hospital at her check-up. She got to drop another medication. She grew taller, which is a big deal for a child who isn’t growing from being on steroids. She’s been doing really, really well. She has also informed me that when she grows up she is adopting 20 kids. That is just my Gracie’s heart. She loves more and wants to do more. She just loves her siblings. In the picture below she made an early morning picnic for them. She’s always the one making the forts, playing games, giving baths (with help), having dance parties, etc.
If you are wondering why Benjamin is in a penguin costume, well, the night before the girls had a fancy dance party complete with big, frilly dresses. Benjamin thought he should wear a tuxedo and this was as close as he could find. He then wanted to sleep in it, which I allowed. There’s just something about not knowing how many days you have that make the little things seem like not such a big deal. Who cares if he sleeps in a penguin costume?
Hope is Epic! Her words not mine. I was asking her what she wanted me to tell others about her and she jokingly said, “Say I’m epic!” and then rolled on the floor laughing. So, of course, I have to include those words. That is just the kind of mom I am. Supportive! Actually, Hopey is truly epic and is doing really well. Health wise you’d never have any clue she is missing half her heart. She recently just had a nasty bout of strep, but other than that she has been remarkably well.
Oh my goodness, this girl has been busy. She went to another VBS at a friend’s church. It was wonderful because they used the same VBS theme that our church did so she already knew all the songs and could sing along. She is learning more about God every day. We tell her the basics. God made everything. God loves you. God loves me. We love God. God brought us to her. Today a friend of the family who speaks fluent Mandarin asked her about God and told her a few more things.
The reward for attending every night of VBS was a ticket to the local amusement part, Adventureland. Tonight she went with Grace, Hope, Cassie, Zach and Stephanie. She loved it. She had a corn dog and a sno-cone. She tried the teacups, the ferris wheel, and a pretty tame roller coaster. She played tons and tons of games with Zach and won two small stuffed toys. She had an old time picture taken in the photo shop.
She has come so far. We are still waiting for her neuro appointment and her 2 1/2 hour MRI, which is scheduled for next week. She had an eye exam this week and it broke my heart. So many things that orphans feel and are fearful of that we can’t even imagine. Take for instance the eye exam. They started showing her letters and all was going well until the letter “H” came up on the screen. She didn’t know “H” so they handed her a board with four letters on it and asked her to point to the one she saw. It was then that the tears started. Not just a tear but full-out-sobbing tears. It broke my heart. She heard the word “test”, couldn’t say the letters, and just lost it. When I asked her about it on Google Translate all she would say was that she was “afraid”. She wouldn’t/couldn’t tell me why. It just made me sad. Something as simple as not knowing a letter should not fill you with such fear.
Today I asked her if she was happy here and her little face just lit up and she said, “Oh yes, Mama!” Those three little words just made my day.
She is still not sleeping which makes for some really, really, really long nights. We have started taking shifts. Every once in a while, Hopey takes the 10 p.m. to 12 p.m. shift for me, because she likes to play video games and she isn’t able to have alone time during the day. It’s a win-win situation. Zach hasn’t been able to take many because of the final push on his video game, but sometimes takes the 1 to 3 shift. Cassie has been taking the 1 a.m. to 7 a.m. shift with Dan taking over at 4 a.m. when he is able to. Cassie is sleeping on and off during those hours, getting bottles left and right, holding a child who doesn’t want to be consoled, and all in all, being a life saver. I get up around 6:30 a.m. and take over with the crew, since no one, but the older kids, like to sleep past 7. Cassie then goes back to bed until noon. We have to find a solution before the end of August because Cassie will be going back to school. We have recently been approved to try melatonin. There was some debate on whether you could use it with a child with PKU, but we’ve been given the okay. Hopefully, this will help our child, who doesn’t want to sleep. sleep.
On top of that we found out that Lainey is extremely farsighted. We have been noticing that she grabs at things funny, like she just can’t see it clearly. She takes both hands and kind of starts big and brings them in closer. She seems to have an issue with depth perception and she is clumsy. It’s nice that at least there is a reason for this. We ordered her a pair of glasses. They are like goggles, completely unbreakable. This child might make that statement untrue.
Here she is rocking her compression shirt. It has really helped her. When you put the shirt on, she instantly becomes calm. It is the strangest thing.
But all in all, if you saw the Lainey we saw on day 1 and compared her to the Lainey you see before you now, things are so much better. Truly better. She is happy. She hugs. She plays with the kids. She laughs out loud. It does a mama’s heart good to know that she knows she is loved.
Well, little Maisey Mei got herself some glasses. Fitting glasses on a little Asian nose and not really having ears is a challenge. These are what we found. Cute, little, pink wire-rimmed glasses. We use her hearing aid headband to hold them up and it seems to be working pretty well. Her speech has just taken off. She is getting clearer and clearer in the way she says her words. She is a great big sister to the littles.
Mom is back in her own home and feeling better. She just had her check-up today. She is still really weak but is steadily getting better. Her ejection fraction went from 20% to 35% – so that was wonderful! We were also told that she would need her carotid surgery done first to allow for proper blood flow to her brain when she is put on bypass. They said surgery is likely three months after pulmonary emboli are discovered. That would mean surgery could possibly be in 2 months with her quadruple bypass following 4-6 weeks later.
I am posting pictures of all the kids so I thought I’d include the picture my sister-in-law recently took of my mom. She is rocking those Minnie Mouse shades! Mom won’t care. Really she won’t. Have I mentioned that my mom doesn’t own a computer or know how to get on the web to even read my blog?
(No worries. I did tell her and she gave me permission.)
He is busy with his new game that is set to be released at the end of the month. I say “his” but the truth is, he is the lead programmer for an international company trying to put their first game out. It’s pretty exciting watching how God has let him use his degree from home, which pretty much everyone said wasn’t possible. Oh and have I mentioned that he has a girlfriend? She is very sweet and all of Zachary’s siblings really, really like her. I won’t out them and put up a picture….yet. For now, do you hear that Stephanie? 🙂
Everyone gets along so much better than I could have even hoped for. Maisey helps Lainey in so many ways. Maisey seems to have an affinity for helping those who aren’t able to communicate. She just gets right in their face and directs them. She makes Lainey hug and hold hands and play. It is a blessing to watch them play.
Right now the littles are riding their cozy coupes in circles around the couch.
Life is hectic, busier than I could even ever imagined but it is full of love and laughter. I couldn’t imagine my life without even one of my blessings.
Praying life is treating you well friends. Enjoy your family, your friends, your faith and follow God’s lead without fear!
Sometimes life takes you by surprise. Sometimes life can be going along very smoothly and then something comes along, unexpected, and it drops you to your knees. November of 2011 was one of those times. The week before Thanksgiving, we took Gracie to the doctor. She had a fever again. She had had a fever on and off for about six weeks and she just couldn’t shake it. They nurse practitioner came into the room and said that her results were concerning and asked if I’d speak with the doctor. Dan and I had been thinking strep or mono and they said, “We need to refer her to an oncologist.” The doctor asked me to step out into the hall. He questioned me a couple times about whether I understood what he was saying. I assured him that I absolutely understood what he was saying. I promised myself I would not cry in front of Gracie until I had a confirmed diagnosis. I asked the doctor if he knew our family history? He said “No”. I explained a little bit about our children’s health issues and assured him that I absolutely understood without a shadow of a doubt what he was saying. I then headed home to pick up Dan.
The oncology clinic got us right in and scheduled her for a bone marrow biopsy. They wanted us to get the results before Thanksgiving. I was so thankful for that. It is so hard to wait and wonder even when you know it is in God’s hands. The results showed it was not leukemia, but that left us with more tests to figure out what she did have. Dan was scheduled to speak in California and he left on his trip. He was so worried about leaving her but I reminded him that there was nothing we could do until the results came back in. I remember waking up and seeing Gracie’s little face covered in a rash. I called him, because he had more or less just landed, and he asked for me to send a picture. I sent a picture and he said, “I’m heading home right now. I know what she has. It’s lupus.” Lupus? Kids don’t get lupus. I remember wondering how is that even possible?
I will admit to being a little miffed when we got her diagnosis. God and I had a talk. I will admit it was a short talk. I have been through enough in my life to know that beautiful, wonderful things come out of horrible circumstances. My issue wasn’t that I had a sick child. At the time I had two children with health issues and we were set to leave in months to get our two new adopted children with health issues. My issue was one of my healthy children got sick. I had purposely signed up to adopt and take in children with health issues. I didn’t understand why it had to happen to Gracie too.
Gracie’s kidneys were severely affected. Dan pushed for them to run some extra tests and all of a sudden our scheduled appointment for three months away in February was moved up for a kidney biopsy the very next Monday, considering this was Saturday night, we knew it was serious. Thank God for Dan and his training. She was almost in kidney failure. They told us it was only a matter of days until the damage would have been irreversible. Gracie was diagnosed with Systemic Lupus Erythematosus with Class 4/5 Glomerulonephritis. She would need months of chemo and would have to be on many medications and oral chemo for many years.
It took 16 months but she is finally in remission. A life with lupus is doable but until you know someone who has suffered from it it is hard to understand the issues that come with the diagnosis. Gracie has to be completely covered in the sun or it can cause a relapse. Considering we have a pool and she is the most warm blooded child around, this is an issue. No more playing outside in the summer sun for hours on end. She wakes up every morning and takes her plateful of meds. She takes more meds before heading to bed. Lupus means your body attacks its own organs and cells. Out of the 11 markers for lupus, Gracie had 9. She luckily didn’t have seizures. Gracie’s mouth was covered in sores. Grace’s neck was a mass of lymph nodes gone crazy. Her face was covered by the butterfly rash. Ironic, since she’s always been her daddy’s butterfly. On top of everything else, she had joint pain. It was a lot for a 6 year old to take, but she did it with grace beyond her years.
That is the thing about Gracie. She has always been compassionate and empathetic. She has always had a faith beyond her years. She has always talked about God like He was her very best friend. She has always been the child to give away her toys even to complete strangers. She has always been the girl who would play with the children younger than her and take whoever was at the playground under her wing. When she found out the chemo might make her lose her hair, she chose to donate it before it fell out. Dan and I always knew God had special plans for her. We just hadn’t planned on this.
Now I watch my Gracie as she spreads her compassion on others. I know there are people who won’t believe that she is the one who thought about helping with the Love Without Boundaries’ Lenten Campaign, but it was all her. (You can read more about it on her site Hats for Gracie). She loves to pull up LWB’s site and pray for the babies that she sees. She is always thinking of others. I’m pretty sure if she had her way we would adopt about 20 kids. Gracie truly is the most amazing kid. Tomorrow she is going to speak at a local church to raise awareness for the Lenten Campaign and for LWB, Show Hope and orphans in general. Just think back to when you were eight. Would that have been something you were thinking about? I know it wasn’t what I was thinking about at the age of eight. I am so blessed to have had another year with my beautiful butterfly. Happy, happy birthday Gracie! Mama loves you more than words can say!
- Chinese Children Adoption International
- Hats for Gracie
- Love Without Boundaries
- New Hope Foundation China
- Show Hope
- China 2013
- China 2014
- China 2016
- Congenital Heart Defect
- Evangeline Faith
- Family Life
- Food for Thought Friday
- Jasmine (Shuang Shuang)
- Jasmine's Dream
- Lainey Rae
- Love Without Boundaries
- Making a difference
- Muscular Dystrophy
- Orphan Care
- Thoughts to ponder