Archive for the ‘Grace’ Category
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Updates
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!
Benjamin
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! 🙂
Cassandra
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
Codey
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.
Elijah
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.
Evangeline
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.
Gracie
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
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.
Jasmine
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.
Lainey
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.
Maisey
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
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.)
Zachary
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
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!
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Gracie is 8
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!
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Gracie and Eli update
As of yesterday, Gracie was officially in R.E.M.I.S.S.I.O.N!!!!! A beautiful day to be celebrated for sure. We are praising the Lord that she was born in this day and age where there is a treatment. Gracie asked if I would make her a countdown chain for the 5 years she will have to be on oral chemo drugs. I laughed. Could you imagine that link? 1,825 links might take me a while to make. The truth is no one has a magic date that she will be done. We have to play it by ear. The doctors said five years at the beginning. Now they say at least 3 but probably more. No one knows for sure what to do to ensure that she won’t have another relapse. We will do all that we can to keep her as healthy as we can.
Gracie has reached $1,144 with her Lenten campaign for Love Without Boundaries. I think she might actually hit her goal. I know there are many people holding onto their change until the end of the month. It will be fun to see the final total. Gracie talked at our church this past Sunday and she did wonderfully. It amazes me that she was brave enough to get up there with a microphone and her slideshow and talk about orphans and Love Without Boundaries. She did pretty good for the first time. She has asked to speak at other churches but so far all their answers have been no. That has been pretty discouraging for her. We thought since we knew people at these churches we might have a chance to spread the word about other ways to help orphans and how Love Without Boundaries works. Alas, it wasn’t to be. We explained that we didn’t want the church to sponsor her and that we just wanted people to donate change if they felt led to do so. Unfortunately, we got letters back talking about how they have missionaries and they couldn’t help her. These letters stated that as a church, they choose to do a couple big things really well and not do little things. It makes me wonder if tons of people are asking the church for money or if they don’t want to set a precedent that you can. Who knows?
We are all excited that Eli’s paperwork can finally be brought to China’s attention for review sometime after the 15th of March. It will take a miracle to have them let us adopt four at once. It has never been done, but we are all for precedents being set and miracles happening which show the glory of the Lord. Last night as I was going to sleep I heard Ben saying, “I am going to be Jake (the pirate) and Eli will be Cubby. We are gonna have fun. We play and play.” For those of you who don’t have little ones, there is a new show called Jake and the Neverland Pirates. It is Ben’s favorite. Ben says he is absolutely positively sure that Eli will be coming home with us this time. I just hold my breath. I understand that miracles can happen and God will deserve all the credit for this one, but I also understand not everything works out the way we think it will or hope it will. I just don’t want my little boy’s heart to be broken. We have purposely tried not to speak about Eli very often so as to not get Ben’s hopes up, but Ben will not let us forget. He prays for his didi and he dreams about his didi. He is certain Eli is his didi.
I love how things have lined up for Eli. It has been an amazing journey from the very first time I saw his sweet face. From the very first moment I saw him, I have thought I was his mama. It is so hard to explain that to people. How can you put into words the fact that a mere picture can take your breathe away? That from just seeing that picture you would go to the ends of the earth to protect him and bring him home. That you cry at night because you know he is still in an orphanage, with a heart defect, and you can’t even hold him and make him feel safe? How do you explain that you know, just as surely as if he had grown in your womb, that this child is yours? I hold on to the fact that my heart has been taken over by the sweetest little boy, who I long to hold, and I trust that God has led us to him. Someday soon I hope to be able to share his picture with all of you.
As always, thank you for keeping our children in your prayers. I know that every prayer reaches God’s ear and every prayer helps. We are humbled that you would consider keeping us in your prayers.
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Gracie’s Lenten Project
I realized that I have shared this with friends on Facebook, but not everyone has Facebook. I thought I would share it with my other friends who have been following Gracie’s story over the past year. Gracie has been feeling much better. She is still not in remission, but she has been feeling very good. She continues to take many medications daily, but she always does it without complaining. She has a check up in March and we are hoping that she will reach remission by that time. It’s been 18 months, so we are all ready for that day to get here.
Gracie truly has the most amazing, compassionate heart. She saw the Love Without Boundaries (LWB) Lenten Campaign on my Facebook and decided she wanted to be a part of it.
Gracie has a special place in her heart for orphans and she has her own page on the LWB site to collect donations. She started out wanting to donate the $50 she had been saving for a laptop. With a $7 allowance every two weeks, it took her quite a while to save up that much. I asked her if she was sure and she said, “That they needed it more than she did.” Her goal at the beginning was to raise $100, her $50 plus another $50. Within minutes of posting it on her “Hats for Gracie” Facebook page, a friend of the family, Mary, matched her. Gracie was ecstatic and tried to decide what her goal should be now.
We received an e-mail from Julie at LWB who informed us they had just purchased 20 boxes of formula and it had cost them $1,694. Gracie decided that was going to be her new goal. At the time, she had raised $170. I told her that she had 10% of the amount needed and maybe she was setting her goal a little too high. She then informed me “That she didn’t ask for $1,000,000. Now that would be a lot of money.” She prayed about it over night and decided this was her new goal. As of yesterday, she has raised $1,000 with the help of friends and family.
Watching her feel empowered to help orphans has been a wonderful and amazing thing! If you want to collect your change over the next month and contribute to her Lenten Campaign you can donate directly at http://www.lovewithoutboundaries.com/get-involved/heroes/fundraising-events/gracie-ellsbury/
Thank you for considering helping these adorable babies this Lenten season. If you would like to see some of their sweet faces you can go to the Healing Homes page on LWB’s site. True Children’s Healing Home
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The smallest of kindnesses really do matter
As many of you know, my daughter Gracie has a Facebook page that a friend set up for her back when she was first diagnosed with lupus. Gracie was going to have to be on chemo and there was a good possibility that she would lose her hair. Dani thought it would be fun to have friend’s donate hats for Gracie – thus, the Facebook page entitled “Hats for Gracie”. She never did lose all her hair. Although, when it started to fall out she opted to cut it off and donate it rather than just lose it. From the generosity of others, Gracie has been able to take hats to the University of Iowa Hospitals. She has sent hats to the Jessie Joy Rees Foundation. She has sent hats to friends that have been diagnosed with cancer. For a girl who is as compassionate and emphatic as Gracie is, it has been great fun to spread the joy to others. Plus, now she has the chance to start making hats for children in orphanages in China. Dani’s idea to encourage a little girl has led to others being encouraged. It has allowed Gracie a way to take something bad that happened and turn into something good. Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Gracie has been through a lot this past year. She has stage 4/5 systemic lupus erythematosus. You can read more here: http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus Most people hear the diagnosis, Lupus, and they don’t think much about it. They hear about flares and remission but it doesn’t really make an impact unless they know someone who has been diagnosed. For Gracie it means not being able to be in the sun for any extended period of time because this might cause another episode. It means lots of sunscreen for something as simple as going outside to go to a store. It means being completely covered by clothing all the time. Not a big deal unless you are an extremely warm-blooded child like Gracie is. It means taking cellcept (an oral chemo drug) for 5 years. It means daily steroid use and other medications. It means lots of doctors appointments and tests and blood draws. 60 years ago her diagnosis was a death sentence. Today she stands a good chance of a long life and we know how blessed we are.
I’m writing this not because of what Gracie is going through but because through it all complete strangers have signed up to “LIKE” her Facebook page. People she doesn’t know have commented and said prayers. She loves that people are praying for her. It really does lift her spirits. She gets so tickled when Dani posts something and people respond. Just yesterday Dani asked if we could get to 350 likes and this morning we are at 385. It amazes me that strangers would take the time to do that. It also shows me how the little things we do really matter. That smile you give someone in the store – it matters. When you take someone lunch or donate $5 to their cause – it matters. When you compliment someone on how they look, what they are wearing, or how they are behaving – it matters. When you take a moment to wish someone well or send a card saying that you are thinking about them – it matters. Don’t ever forget that. You may not hear a thank you, but it truly does matter!
We don’t hear these stories in the news because they are small little instances and don’t really sell papers or magazines. Can you imagine if the headlines read “Grandma, 82, ecstatic because 200 people wished her a happy birthday. She feels cared for and like life had meaning again!” It would be nice but it’s not likely to happen.
Gracie’s headline from yesterday would read something like “Little girl was ecstatic Saturday because 53 random strangers took a moment to hit a button and let her know that she was cared about!” You have no idea how much that means to her. She really is a brave little girl who doesn’t complain about taking medicine every day and night or sitting through hours of infusions or getting poked for lab draws or having to sit through way too many different doctor appointments. She is a compassionate little girl who has a faith that is unbelievable. Thank you for brightening her day! THANK YOU!
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Fun Friday Video
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Fun Friday Photo
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Surrounded by miracles
Many people look at my life and think it’s crazy. They tell me they could never do it. They see only the health issues. I don’t see those things when I look at my children. I see beautiful, happy children full of life and compassion. I see miracles all around me. Here are just a few of them.
Recently we learned more about Maisey’s story. We knew her time in the orphanage was rough. We had heard stories of babies who weren’t able to feed right. We knew that the House of Hope had found her, took her to their foster home and nursed her back to health. What we didn’t know is that when they found her she weighed 3 kilos (6.6 pounds) at 6 1/2 months old. My poor baby was starving. I hate to think of her lying there crying and not having any comfort. She is so sweet and so funny. She has brought so much joy to my life. The miracle that is her life is so amazing to me.
Becoming an Iowa girl!
We had also learned that our sweet Benjamin probably shouldn’t have been put on a list. They’ve opened up the special needs category a little, but we have been told that China doesn’t put children who have poor prognosis on their adoption lists, but somehow Benjamin found his way onto one. Don’t know how it happened but I’m so blessed that he did.
He sang "Happy Birthday to me!" all the way through Target.
We were told numerous times that Codey wouldn’t make it past the week, then a month, then a year. I don’t know how many times we called family down because they said he wouldn’t make it through the night. We were told he would be blind (he isn’t), deaf (he isn’t), and in a vegetative state….well, see for yourself.
He's a happy boy!
Then there is Hope, whose biological parents lived in the south, came to Iowa to deliver for pre-adoptive parents who lived on the east coast. I don’t understand it, but I’m so happy that it happened. On top of that is the miracle that Dan was in the unit and heard her story. Not to mention the miracle that she made it through all her open heart surgeries. I am so blessed to have her in my life.
She is such a pretty girl!
Or the fact that I just happened to have a routine ultrasound where they picked up my blood vessel rupture with Grace. I was having no pain and no contractions. Everything felt fine. They said just a few more hours and she probably wouldn’t have made it. Our doctor and Dan’s friend said after he pulled her out, and now that he knew she was all right, he could say that was the most blood he had seen and had a baby come out okay. Add to that, the fact that I was 40, had my tubes reversed after 12 years and got pregnant the very first month. The doctor asked if I wanted them tied again to which I replied a resounding YES! He said good because I don’t know how you got pregnant any way. One tube is way too scarred and the other doesn’t even look like it’s hooked up. The GRACE of God is alive and well in my life.
Grace has the most compassionate heart!
My life is full of happy, wonderful miracles! I am so very, very blessed every day to get to be their mama.
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Gracie Update
Today was her last dose of i.v. chemo. The doctors say she is in partial remission. Her kidneys are doing much better, but her lupus is still not completely controlled. Her complements are still not normal, although they are close, and she is anemic again. They wanted her in remission before changing her to the oral chemo but decided that because her lupus was such a severe case that she will likely relapse and need cytoxan again. You can only have so many doses in a lifetime so they want to save some for the next time. She will most likely be on cellcept for 5 years after the date they declare her in remission. That seems daunting. Sometimes it seems overwhelming. I’m so very happy that there are treatments available for this. If you read about this back in the 1950’s, the survival rate was 0. I am so happy that there are treatments. I am happy to have my little girl. She is an unbelievably special girl in so many ways – her faith being one of the biggest ways. I am blessed.
I thought I’d share my Hats For Gracie post….. (For those of you who aren’t friends with me on Facebook.)
This is a little embarrassing but I thought I’d share that life is all about perspective. Everything is how you look at it. You’d think I’d have it down pat by now, but I still need reminders every once and a while. Yesterday we received another bill for Gracie’s care, another $1,982 bill to be exact and I complained. Mainly, I complained because you can’t tell what you’ve already paid or what it’s for. They just ask for the money and make it due in 3 weeks. I then realized Grace was in the room. Later I decided I should say something to her because I didn’t want her to feel bad about the bill. I told her that I wasn’t mad about the bill so she shouldn’t worry about anything. She told me “I think $2,000 is a small price to pay for my health and my life.” Truer words have never been spoken. Perspective. I think I’ll get me some. 🙂
Previous Day’s Hats For Gracie post….
Last night as I was tucking Gracie in she told me that she didn’t like having to wait until the sun went down to swim, that she was really kind of tired of medicine and she wasn’t happy that she would need another pulse of steroids on Wednesday with her chemo. She told me that she didn’t think lupus was very nice. She also said she understood that God is perfect and His plan is perfect so He must have some reason for all this so she would try her best to be happy. She said, “Sometimes happy takes work but it’s worth it.” Good advice from a 7 year old so I thought I’d share.
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I just want to go already….
I was talking to a friend of mine yesterday about going to China. They have a little girl (who is as cute as can be) that they adopted from China. Every time I see her I just want to squeeze her. 🙂 We were discussing how sad and scared her daughter was at the very beginning. My friend said the very next day when they gave their daughter a second bottle it was a turning point. She was amazed that there was more food. That just breaks my heart, especially because Benjamin hasn’t grown in the past year. Maisey is 2 and he is almost 4 and there is only 1 pound difference. Kids with heart defects need extra calories just to grow. I think about him there in the orphanage needing and wanting more food and it just makes me want to cry. I hate that my children have had to fend for themselves. I’m happy that there was a place for them to go. I’m happy that people have cared for them, but I hate that this world is so imperfect. I hate that they were abandoned. It truly breaks my heart.
On a different note, I took a bunch of stuff to Goodwill today. Did my spring cleaning early because I’m afraid my spring is going to be very busy. We have stuff in boxes that we carted from Iowa City 10 years ago. As I was looking at the stuff, I kept asking myself why have you held on to this? Now was a wonderful time to just go through everything. My motivation? Watching my mother-in-law go through her father’s house full of 90+ years of papers. She found papers from the 1920’s. I don’t want to do that to my children. Although, the papers were kind of cool to look at. As I was dropping off my stuff at Goodwill, I was thinking about all the useless, unnecessary stuff I buy. The gentlemen at the door was talking to Grace about the clothes that were being packed up and how they send some of them overseas to people who don’t have anything. Gracie was very touched by that. Grace & I discussed how it’s hard when you see something pretty and you would like to have it, but you don’t really need it. We should just walk away and see if we even remember it in a week. How much better would it be to give that amount to someone else? I have done so many things wrong with my money. It makes me want to be better. Which led me back to Maisey & Benjamin, I’m so happy they will soon be part of my family. I’m also sad that there are so many hurting kids out there without a family. I may not be able to adopt any more, because the legal system frowns at adopting over 50 – which I suppose makes sense. I can, however, sponsor some orphans. I may get up to that 12 child mark that I once talked about in high school. Sounds like a good goal to me.
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