Archive for the ‘Lainey Rae’ Category
Sometimes things happen in life that you could never, ever imagine happening.
To most people, this picture will just look like two siblings snuggled up together, but I’m telling you it is so much more.
Lainey is a little girl mostly non-verbal, with severe limitations, who most the time doesn’t really pay attention to what is going on around her. She is in her own little world a lot of the day.
Codey likes to stay pretty much to himself too. He doesn’t like to share his room with the littles, although they love his noise-making toys, so they are always trying to sneak into his room. Codey has a couple phrases that he can say but he is pretty non-verbal too.
Yet, for whatever reason Lainey loves Codey. Codey scoots around on the floor and she loves to run up behind him and lay her head on his back. She likes to help him along and has even been known to sit on his lap while he is trying to scoot. They are just so cute together.
She runs into his room, throwing the door open announcing herself, and climbs on his bed. He just pretty much lets her be. She snuggles up on his bed with a bottle and he watches t.v. from his comfy chair.
I can guarantee you when I imagined us adopting again, I never pictured this. I worried about how much it would stress Codey out. I wondered about how he would react to them. I wondered how they would respond to a 26 year old boy who scoots around on the floor and growls when he is upset. It’s not the normal for sure.
But this…..this is….so much more than I could have ever hoped for. This is the biggest blessing.
So much so, that when I saw this picture, I cried.
Feeling very blessed indeed!
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?
This was one of the first pictures we received of Lainey or Lan Lan as they called her.
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.
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!
I may or may not have been told by numerous people that it’s time to update. So here is my excuse, finding time to sit at the computer without sticky fingers around, is extremely difficult. I often update on Facebook because it’s easy to do quickly while sitting at the hospital. But tonight, all the stars finally aligned and I am sitting in my mom’s hospital room at midnight, things are quiet, and I remembered my computer. I know. I know….shocking. I just might get this update finished.
Now where to start, there is just so much that has happened since Evie’s surgery and Ben’s birthday.
Let’s start with EVIE and the new word I learned yesterday.
Arborization. Isn’t that a lovely word? Truly it is. You can take my word for it. Eight weeks ago, Evie had a BT shunt placed. After a scare where she clotted off her shunt, and an emergency trip to the cath lab, she has done wonderfully. Four weeks ago, we had an appointment where we discussed the fact that her oxygen saturations were still in the high 60’s. Dr. Divekar was not thrilled about those numbers and said that he was quite concerned that she wouldn’t be a candidate for the Glenn. I went home upset and called Dan, who was away on a business trip. He said with great certainty, “I don’t believe that. I think she will do wonderfully and I believe this is due to her pulmonary emboli from the clotted shunt.” He is usually right so I was relieved.
The hope after surgery was that with more blood flow to her pulmonary arteries, they would grow, which would make her a better candidate for the Glenn. Wednesday she had her follow-up heart cath and we got wonderful news. The left lung is still not getting much blood flow, BUT the right lung is getting plenty of blood flow from the shunt. Her right pulmonary artery grew 2 mms wider in 8 short weeks. But the best news (and I wish I would have thought to get video) is the arborization in her lung. What that means is instead of there being very limited blood flow as the blood comes out of the artery, there is what looks like a tree. The artery being the trunk and the vessels coming off the branches. It was such a beautiful sight. On top of that her pulmonary pressures were down. All of this means she is a candidate for the second stage surgery, the Glenn, in the next 3-4 months. And all of that means she has a chance for a longer life. Praise the Lord!
She was a trooper. After being scared initially, she laid flat and took a nap. Laying flat for six hours is no small feat for a two year old. She charmed everyone when she woke up by blowing kisses and waving good-bye. She is such a beautiful soul.
LAINEY AND JASMINE
Last night we had an appointment with neurology for Jasmine and Lainey. We haven’t had a lot of information before this. We pretty much know their diagnoses based on the information we have before us. We just don’t have all the testing behind it to have a medically conclusive test giving us a definitive diagnosis.
We have been trying to get Lainey to settle in and see where her base-line is going to be. I think we are finally there. I will say that most of the time she is a happy girl. She has started to have some purposeful play. She giggles and runs and plays. She even understands to bring her lips to yours for a kiss. She has started making some sounds and that “mmmmmaaa” is going to be mama very soon. Her diet has been the easiest thing to handle, which is funny because it was my biggest fear. Truth be told, I wish we were only dealing with what I was initially concerned about. Temper tantrums over not being able to have McDonalds would be much preferred over PTSD nightmares that send her into a not really awake state raging for 30 minutes or more. The good news is that these are not daily occurrences any more and they rarely happen during the day. She is still having seizures that are short in duration and happen many times during the day. She also doesn’t sleep for any long periods of time. This has been the hardest on our family. We all take turns doing the “Lainey shift”. She sleeps for maybe 3 hours and then wakes every hour on the hour. This isn’t a you can just let her play in her crib or cry herself to sleep issue. If you leave her alone, she will rage. It’s not a good thing. When Lainey is awake, you are awake. She gets up for good any time after 3:30 a.m.
They are going to schedule a 24 hour EEG for her to try and capture her seizures. If you’ve met Lainey, you know that this is going to be a most enjoyable stay (truly wish I had a sarcasm font). For those of you who don’t know Lainey, let’s just say that it took 10 minutes and three people to hold her still for me to trim her bangs.
Look at that smile! She is a beautiful little girl who is improving each and every day. We’ve come so far in the five months since she has been home. Truly we have. I don’t know where she will end up but the little girl you see today has made so much progress. We have hope that she will continue to improve.
Jasmine. Where do I start? First off, we know it is some sort of muscular disease. She has lost so much muscle tone already. They need to do a muscle biopsy for a definitive diagnosis. Her scoliosis is starting to hamper her comfort and it is thought that we will have to do surgery in the next 6 months. For those of you keeping track, that will be at least 4 heart caths, 4 heart surgeries and a major back surgery in 6 months time. And no I’m not complaining. I’m just stating the facts. Sometimes it is a little overwhelming. It’s a good thing I can do all things through Him who strengthens me because this is so much more than I can handle on my own.
The hardest part for me with Jasmine is just the loss of dreams. They will have a mandarin interpreter for her when we do her echo, pulmonary function test and see ortho. Jasmine wants to run. She wants to play. Instead of saying “Yes, we can fix this.” We have to tell her that she has to have a 6-10 hour surgery that will require that she lies flat for six weeks. I hate making her cry. She is such a happy girl with a wonderful smile. I love to make her laugh. I love to see that smile spread across her face. I don’t want to take away her dreams or disappoint her in any way.
She knows though. I know in her heart she knows the truth. I know this because Gracie has told me that Jasmine said she doesn’t want to be in the hospital like nana. She doesn’t want to be sick and she is scared. I’m happy we adopted her despite the pain in my heart for what she will have to endure. I feel blessed every single day that I get to be her mama. She really is a very special little girl. When people say, “I don’t know how you do it. I could never do that.” I believe they are missing the point. Because when you take your eyes off of yourself, then you know the truth. It doesn’t matter what I can do. The point is Jasmine will not be going through all of this alone. She may lose all ability to move, but she will know she is safe. That is what it is about. Jasmine. It’s all about perspective. You can feel sorry for yourself or you can feel blessed for being a part of a much bigger picture. A brighter future for a little girl who deserves to be loved with great abandon until the day she draws her last breathe. She should feel safe and loved and cared for. It’s not that Jasmine deserves more than other children. The truth is ALL children deserve the love of a family. The fact that we, as Christians, have lost sight of this fact breaks my heart.
Jasmine just wrote an essay for our upcoming six month post placement report. China has six questions they want you to answer. Cassie can read enough Chinese to get the gist of it. Jasmine stated that she loves her family. That she is very happy. That she loves school. She is doing remarkably well. We started school in September and we are through Kindergarten and first grade and well into second grade. She can write and count to 100, by twos, by fives, by tens. She can read some. She can add and subtract. She is a very bright girl and is excited to learn.
Benjamin has a heart catherization scheduled in Boston on the 28th. His has been the hardest decision to make. There aren’t many five year olds with uncorrected transposition around. It is so hard deciding what to do. Is it overkill to take him to Boston? Maybe? I don’t know. But when it comes to your child, you want to give them the very best chance that you can. You want them to be operated on with the most experienced hands you can find so that is what we are going to do.
Ben is not happy about surgery. He is a smart boy and knew something was up. When we initially started discussing this with him, he told us that Eli could have surgery but he was fine. He finally agreed to surgery as long as it could be performed at home. Now he says he will agree to surgery in the hospital as long as Spiderman performs the surgery. This came after he saw this picture from another heart mom’s blog.
Ben loves his superheroes. He dresses like Superman when he goes to the hospital. I think if the surgeon dressed like this, Ben would happily go into surgery. I wonder what the odds of talking the doctor into this would be?
Which brings us to my mama, we are still in the ICU. She recently had a liver biopsy to try and figure out why her bilirubin just doesn’t want to come down very quickly. The good news is that her liver is not in failure. It is just in shock. She doesn’t feel like eating. She is very weak. She is in pain and can’t take any medication because her liver is not functioning well and her kidneys have failed. She is very weak and has a long road ahead of her. The good news is that she should get there. The bad news is she is beyond frustrated. On top of that, she gets confused and keeps trying to get out of bed. So far we have had two falls out of bed in the ICU. No injuries but she is scaring everyone.
As you can see, we have settled into our new normal and life is just smoothly moving along. (Still can’t find the sarcasm font.) Truly though, I love the noise and the chaos of it all. I love looking out into my sunroom and seeing the five littles play together. I love seeing Jasmine and Gracie all snuggled up in bed watching you-tube videos and singing. I am blessed to have Cassie and Zach still be here and willingly help with my mom and all the others. I am blessed to have Dan’s mom help out with the kids so I can be with my mama. I am blessed that no matter how much happens in our lives, Dan and I know who is in control and rely on each other to make it through.
It hasn’t all been sad. We have plenty of fun times in the midst of all the struggles.
We went to the Renaissance Fair.
We went to the zoo.
We took Jasmine to the Casting Crowns Concert at the Iowa State Fair.
The girls went to the Women of Faith Conference
And the usual fun grocery runs to Wal-Mart which get us many comments from “You have your hands full.” to “Are you running an Asian day care?” to “Where did all these kids come from?” Never a dull moment at our house!
Thank you for taking the time to ask me how it was going and to truly be concerned about our family. As always, thank you for the thoughts and prayers.
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!
There are people in our lives that change us for the better. People, who we have never even met, whose words impact us and change the course of our future. Dr. Joyce Hill is one of those people in my life. It was by chance that I even learned about her.
One day I just happened to post on a Show Hope Facebook status, thanking the volunteers for all that they do for the orphans in China. I don’t often comment on Facebook threads where I don’t know anyone, but that day I felt led to say “thank you”. At the time, we were waiting to go get Maisey and Benjamin. Cathy at Show Hope responded to my comment and asked me if they had cared for any of our children. I told her that I didn’t think so and she asked for their names so she could check. She told me that they hadn’t cared for Benjamin but they had cared for Maisey. We exchanged e-mail addresses. She told me about the wall in her office where she has pictures of children waiting for their forever families and pictures when they get home. I thought that was very sweet and I told her I would send her a family picture when we all got home.
Many months later, Cathy wrote me back saying that she remembered that Maisey (Chaya) had been in an earlier newsletter and she thought that I might like to see it. Through that e-mail we learned that Maisey was the 1,000th baby at The House of Hope in China. We learned that the Hill’s ran this home and their mission statement was “To comfort always, to relieve often, and to save sometimes.” We were intrigued and purchased the book that Elisabeth Gifford wrote called “The House of Hope”. When reading this book, on almost the last page of the book (pg. 216) we read “On 22 October, Chaya, an abandoned baby with huge, trusting eyes, was admitted to New Hope.” This book is an amazing testimony to following God’s calling in your life. I highly recommend reading this book. This book will open your eyes to the plight of the orphan and move your heart to do more – whatever your calling may be.
Dr. Hill has now treated many of the sickest babies in China at the House of Hope. In Maisey’s case, we learned that they found her in an orphanage weighing 6 pounds at 6 months. They cared for and loved my Maisey back to health. Because of their care, we have been blessed with this sweet, little girl. It’s hard to explain what something like that means to a parent. To know that your child suffered, that someone saw her worth, and gave her a chance. And because of that chance, you were blessed with the sweetest little girl with the biggest personality.
Dr. Hill has also cared for my little Lainey and Elijah. Eli was cared for at Maria’s Big House of Hope. He was actually their 500th child admitted. I saw Eli’s picture in the New Hope Foundation newsletter and fell instantly in love with this little guy. It’s pretty amazing that we ended up with two of their milestone babies. Lainey was also cared for by New Hope. She has required a special formula for her metabolic disease and they were able to provide that for her.
The Hills influenced Dan and I in one more really big way. In their book they have a quote, when they were talking about what God was asking of them. Joyce said, “Rob, I think God is asking us to get into a river and I don’t know where we are going to end up, but I think we should just get in and we should go with it.” Her husband, Robin, had a well-paying job. They lived a very comfortable life. They decided to give it all up and stay in China and care for the very least of these. Up until that moment, they hadn’t even thought about staying in China and caring for orphans. They just felt that God was telling them to stay. God was encouraging them to bring compassion to dying children, to let these children know love no matter how many days they had left. I can think of no greater calling in life than to care for those that others have discarded or considered unworthy of their time. When Dan and I felt led by God to adopt four, we felt unprepared and wondered if we could do this. We prayed about it and decided to do what the Hills had done and jump in and see where God would lead us. To give up control and to trust in His plan.
We proceeded in faith and had a year of watching miracle after miracle unfold until we were allowed to adopt four at one time in China. It hadn’t been done before and they said they wouldn’t make it a precedent, but we were the privileged pair that watched it all miraculously unfold. What a gift. What a glorious thing to be a part of.
Through all of this we learned about Love Without Boundaries, which Dan is now a volunteer for. Dan and Dr. Hill have corresponded during the past year and have become friends.
As you can see, the Hills have played a huge part in our lives. I had always hoped to meet them. Dr. Hill has been ill for many years. She has been confined to her bed, flat on her back for way too long now, but she has still continued doing her work from that position. Unfortunately, we recently learned that Dr. Hill had been in a coma and was not doing well. She had gone home only to be hospitalized again. It is posted on their site and you can read about it there. Hope Foster Home
Today, however, we learned that Dr. Hill has woken up and surgery is being performed as I write this blog. There is hope today at the House of Hope. I ask for prayers for Dr. Hill. Please pray for her and her family. Pray for the doctors and nurses who are caring for her. I pray that her suffering is eased and that there is an end to the endless headaches that she has suffered. In a world full of celebrity worship and heroes that have very little worth, I believe Dr. Hill to be a true Hero. Even though she would be the first to tell you that what they did wasn’t as much brave as it was obedient, Dr. Hill will always have a very special place in my heart. Because of her care, because of them following God’s lead in their lives, my life has been blessed with three of the most wonderful children you could ever ask for. That is a priceless gift. How do you ever thank anyone for something that wonderful? There are not words to convey my feelings for Dr. Hill. I ask that you continue to lift Dr. Hill up in prayer and I pray that she will be blessed with the same compassion and caring that she has showered on so many others.
P.S. If you feel so lead, you can support the Hill’s in their mission on their website. Hope Foster Home (Babies) They have a page listing the financial needs they have or you can specifically sponsor a child. I highly recommend sponsorship because you get updates on how that child is doing. It is a fun way to care for one of the least of these. We sponsored Lainey who was Ginny Rebecca on the site and we got updates for her along the way. There are many ways to help both monthly and as a one time gift.
Hard times and deep truths often come together. If you want the latter, you must be willing to make it through the former. – unknown
30 days ago today, our family went from 10 to 14. 30 days ago today, I thought I had been through hard and could handle anything. 30 days ago, I thought I had it all figured out. 30 days ago, I thought my faith was secure. 30 days ago, I knew what God was asking of me and I was ready to proceed with this grand adventure. 30 days ago I was so sure that I could handle anything. 30 days ago – oh man, was I was clueless!
We showed up the day after Mother’s Day, ready to receive three more blessings. My blessings would then total 12. My childhood dream of having 12 children was about to come true. I was happy. I was nervous. I was feeling so blessed. I knew two of these blessings had complex heart defects. I knew Lainey had PKU and there was bound to be issues with her feedings. We were prepared as we could be….at least that is what I thought.
But 24 hours later, I was questioning everything. How could God bring me to this. This was not just hard, but realllllyyyyyyy hard? I was already doing my best with a life that was hard at home. Not so much hard, but complicated. I have children with complex medical conditions. I have a busy household already. I do g.t. feedings and oral feedings, medications, and lots of appointments, on top of homeschooling and all my usual mommy chores. How in the world were we going to do any of this?
All I could see in that first 24 hours was the hard. The fits, the crying, the whining, the refusing to eat, the not sleeping, the more complex diagnoses and the fear. Fear was a very real emotion during those first few days. How were we going to handle this? Before we traveled, I was so sure that we could handle it. But now I doubted everything.
Well not everything, I still believed with all my heart that God brought me to these children. These were my children. But I doubted me. Maybe that is why this happened. I mother pretty well. I mother people who don’t want to be mothered. I have been known to mother my grown children’s friends. It’s just in my genetic code. It is who I am. When others dreamed of being doctors, nurses, and teachers, I dreamed of being a mom. I have always believed in my ability to mother. I don’t do everything right, but I have what I believe to be the most important aspects of mothering and I do those to the best of my abilities. I believe God brought me, once again, to that place of being so overwhelmed that I knew there was no way in the world I could do this, which placed all that we were doing, even more so, at the base of the throne of my Lord. Only through Him would we ever be able to do this. Only with Him would I be able to survive.
So 30 days later, I praise a God with a plan that is so much bigger and better than mine. I give all glory to Him and the previous year that brought us to our blessings. Our wonderful, unbelievable blessings that have made so much progress in just 30 days.
Evie’s prognosis may not have been what we had hoped, but we have not given up hope. In 30 days, this little girl has gone from not being able to sit by herself to crawling across the floor at lightning speed. She is so happy and so loving. She is so very beautiful with her big brown eyes. She is very blue still with O2 sats in the mid 50’s and low 60’s,but she has already put on four pounds. This is what a little love and a little food will do for you.
30 days later, and this handsome little guy has become Mr. Charming. He was withdrawn, whiny, and refused to eat for days, but now he is so sweet and loving and there isn’t a food he doesn’t like. He is thoughtful and takes care of his sisters. He is the perfect little guy to end our family. (Although, Gracie did tell me last night that she wished she could hypnotize me so I would forget how many children we had so we could adopt again.) 🙂
Shuang Shuang’s smile lights up our house throughout the day. She laughs, and teases, and is the best big sister. She holds the kids. They climb all over her wheelchair. She even reads to them. She has been so trusting from day one. We have been so moved by all the people who have had their lives touched by her. We have received letters and e-mails. She received an American Girl doll with a wheelchair from her new pen pals. She received a birthday present from Spain from a family that had sponsored her while she was in the orphanage. It has been so moving and we have made new friends. Her diagnosis was not what we had planned on and her future won’t contain the healing surgery we hoped for, but we are blessed to have had her join our family.
Which brings us to little Lainey, she was so very sad those first 48 hours. She broke my heart and I wondered if I would ever be able to reach her. Would she ever be happy? Would she always be in her own little world? Would this angry, crying, temper tantrum throwing be all that there was? 30 days later and we see a girl who smiles most of the day. She runs up to all her siblings and loves to chase Codey. She loves to climb up in your lap and sit. She plays and she laughs and she is truly happy. There are still a few outbursts, but they are few and far between and most of them involve wanting her bottle. She is not magically cured and she still spends a lot of time in her own little world, but there are moments of eye contact with meaning. There is purposeful play. She runs up and hugs people and kisses them. She loves to cuddle on your shoulder.
30 days have brought so many changes to our family. I thought there was no way that I would be able to do any of the usual things that I did with the kids, but….
This is what we look like going shopping.
This is what we look like swimming.
This is what we look like hanging at home.
This is what we look like in our car.
We can’t all fit in one or even two of our cars, which is why we had to buy a bus….
Which made Benjamin very, very happy!
30 days later and although my house is messier and I am definitely more tired, I have had the privilege of watching little ones bloom. What a miracle to get to be a part of. 30 days later and I trust God even more. 30 days later and I realize that I set my goals too small. I believe that I can’t when God knows that I can with His help. We are still getting used to our new normal. We are still trying to figure out how to run our days as smoothly as we can. But 30 days later, I have been kissed more, hugged more and loved more than I ever believed possible. I have heard more laughter and have had more love showered on me than any mama deserves. 30 days later is a very good place to be.
Now that I am past the shock of things I wasn’t prepared for and have gotten more than two hours of sleep in a row, things are looking much better. When you adopt, you know you are not getting the most up-to-date reports and you always take the chance at unforeseen circumstances and diagnoses. We went into this with our eyes wide open about that and I thought I was prepared for anything that came up, but I obviously wasn’t as prepared as I thought I was.
Now that I’ve gotten a week under my belt, I will say right up front that God knows better than me. What a statement. I feel like I should put a “duh” in the middle of that. Obviously God knows better. I have always known this but it still blows my mind everytime I see Him work in my life. He knows what I can handle. He knows how to stretch me and challenge me and make my faith grow. All along, I have said “I’m too old for an infant. I couldn’t possibly adopt an older child. Autism is something I just couldn’t deal with.” I can’t decide if He is just trying to prove me wrong or not so I have decided to change my new “I couldn’t possibly….” to “I couldn’t possibly handle winning the powerball.” 🙂
I said, “I couldn’t handle an infant.” Evie is like a newborn. She eats every two-three hours. She isn’t able to sit alone. She is pretty malnourished and delayed. We took her in for her medical evaluation yesterday and her oxygen saturations read 53%. She is very blue and very sick. Because we have dealt with Ben, it hasn’t been nearly as frightening this time around. I did say I couldn’t deal with a newborn and guess what? I can. Had I avoided this adoption, then I would have missed out on the cutest little girl you have ever seen with the biggest personality. The first few days she was just so hungry all the time so she cried a lot. Now that she has been fed continuously for a week, she is already doing so much more. She is trying to pull herself up to a sitting position. She can grab on and pull herself up to her knees. She smiles all the time. It’s funny because people expect her to be an infant and then she smiles at them with all those teeth. It’s funny watching their reactions. What a sweet little soul she has. She charms the socks off of everyone she meets. I’m glad God knows better because I would have missed out on loving this sweet, little girl.
I said, “I couldn’t handle an older child. I said it wouldn’t be a good fit for our family.” Wow! Was I wrong. I wish you could see just how brave Shuang has been. She has taken this all in stride. She is all smiles and sweetness. She had to get her immunizations yesterday and she said it was fine. She would be brave. She just wants to get to America and be with her family. She is so good with the little ones. She encourages them and shares with them. She helps them in any way that she can. She offers you her food. She tries so hard to be helpful. When we took her into for her medical appointment yesterday, the doctor started off being so gruff. Then the doctor’s attitude changed, she talked about how sweet Shuang is. She talked about how her medical records don’t match with what she has. We told her we were aware of that. It’s kind of hard to miss. By the end of the appointment, the doctor was very kind to Shuang and even walked Dan and Shuang to the elevator and pushed the buttons for them. Shuang is another sweet soul just looking to be loved. Everyone has been so moved by her and her story. No one leaves her presence without being moved. It is hard for us, in America, to understand what it takes to be disabled in China. We have had people just stop and glare at her for over 20 minutes. They yell things at her. She just smiles and tries so hard to be brave. I can’t wait to get to America and show her how many people care about her. To show her that her disability does not make her less than. She is truly an amazing little girl with the best laugh. I am so proud to be her mama and it has only been two weeks. Oh what I would have missed.
I said, “I couldn’t handle parenting an autistic child.” The reason for this statement is because I am a very silly, huggy person. As a matter of fact, the first sentence Shuang learned from us was “mama’s silly”. It’s a good thing Shuang likes silly. But the truth is, I was afraid of how I would react to a child that couldn’t show affection back. That’s not a pretty statement but it’s the truth. I was afraid of how I would respond as a mother. I love my biological children and my adopted children the same. Now we all love our children differently because they are different people. Nothing in life is even and fair. I love my children for different reasons because they are different people. I don’t have favorites though. That is a totally different thing. What I was afraid of was the not feeling connected part. I love spending time with my children. How would I react to a child that couldn’t show love back. What I’ve learned is it doesn’t change how you feel as a mother. It’s unconditional love for a reason. It’s not based on how they love you back. It’s based on how much you love them. Lainey is severely delayed. Lainey is in her own little world most of the time. Lainey has triggers that take her into a full blown tantrum very quickly. We are learning those triggers and have already seen progress in helping her calm quicker and stopping the tantrums before they get full blown. But Lainey also has a cuddly side. She doesn’t hug, but she likes to lay her head on your shoulder and just snuggle in. She laughs and runs and dances and spins. Lainey has worth and Lainey deserves a family. I’m glad I get to be her mama. I know it won’t be easy. I know we are going to have to make a lot of changes, but I can already see how much she is going to change me as a person.
God does know better. God knows what we need to grow as a person and what we can handle. I will say that without Him I couldn’t handle any of this. Without His promises to go to time and time again, I would be lost. I have and will spend many days crying out to Him for strength to get through, but I know His love is constant and His grace is sufficient. I can do all things through Christ who strengthens me. Dan brought me those words to put on the wall in the kid’s room. It’s a constant reminder of where my eyes should be.
I would be remiss to not mention little Mr. Eli. What a charming, handsome boy this boy is. He is so sweet and soft spoken. He really does remind me of Zachary when he was little. God is amazing with how He works. I am amazed at how He makes families. If you know my Zachary, you know what a special boy he has always been. He has always had a faith that was unbelievable from the time he was little. He is gentle, smart, observant and the most special kind of boy. Ben is like that and so is Eli. It just blows my mind that they are all so alike. I love that Eli and Ben are going to be such good friends. I can already see them building things together. God is so good.
God has His hands in the smallest of details. When I stand back and look at how blessed I am to get to be a part of these things, well…..it is just mind boggling. I humbly stand in awe of a God that would allow me to get to do these things. Truly, I am amazed. When I think of all the things that had to come together for this past year to work, it is just mind blowing. We started out with these words at Codey’s bedside “Faith makes things possible, not easy!” Faith in God’s plan. Faith in God’s promises. Faith that all things work together for good. Faith in something that is so much bigger than me. And to think , had I chosen, I would have missed it.
- 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