Archive for the ‘Hope’ Category
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Happy Birthday Hope
19 years? Where has the time gone?
This sweet girl was brought to our family by nothing less than a miracle.
Her story is amazing and so is she!
She takes animation courses online and really loves anything that deals with art.
Her hair color changes often and always looks amazing!
She was recently accepted into Aveda Institute’s esthiology program. She has always had a passion for makeup and skin care. She is excited to see how these classes help her in her SFX makeup. I am looking forward to her helping me with my skin care. (Hint. Hint.) 8 sisters to practice on. She’s going to be light years ahead on volunteers to practice her craft.
She has the extra benefit of taking a very small class (15 kids) with one of them being her very good friend, Grace.
She’s been friends with Peter for years and years now.
She loves hanging out with her friends at church.
She loves her puppy, Snickers, that she’s had forever.
And her new puppy, Ripley.
We celebrated her big day by eating out at HuHot.
She doesn’t like cake so instead went for the “taco” birthday cake.
Maisey and Hope both LOVE to draw and will draw any where, including at the doctor’s appointment for their yearly physical. Birthday buddies share birthday physicals. We know how to have fun in this house. hahaha
She went out to eat with her homeschool advisor to celebrate her birthday, getting into Aveda, and her upcoming graduation. Ms. Deb has been with her since the beginning of her schooling. It’s funny how people come into our lives and become like family.
We are excited to watch her head into adulthood. We feel unbelievably blessed that we have been given the joy of parenting her for 19 years.
Happy birthday Hopey!
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Why We Share Our Story
After talking with Cassie today, I decided to take a moment and tell you all why we decided to tell our family’s story through our Facebook page and our blog. Years ago after we had adopted Hope, I refused to talk about her adoption story because I felt like people would think that I was bragging about saving this child.
You see Hope’s story is amazing. It all started when my husband, who was a fellow in neonatalogy, had a patient born with a heart defect. The preadoptive parents backed out when the doctors found the heart defect and the birth mother decided not to treat, which was one of the three options available for a child born with Hypoplastic Left Heart Syndrome (HLHS). Dan called me and told me he just couldn’t write the orders to discontinue support for this baby. We, as a family, decided to take her home and let her feel the love of family for as long as she lived. We had been through the death of a child and knew, with God’s help, we could do this. Not long after we had made that decision, the cardiac surgeon asked for a chance to save her life. We had been given a wonderful gift. We weren’t looking to adopt. We stepped out in fear because we felt that was what God was asking us to do. Hope is now 15 and doing very well.
But back to feeling uncomfortable telling Hope’s story. I would rarely tell anyone her story. I felt blessed that this adoption happened out of no where. I was so happy to have been given this opportunity. The way God worked out the details was unbelievable, but I still felt like people would think I was bragging. There were two conversations that we always heard if Hope’s story was mentioned. Either we heard that we were going to ruin our family and this was a stupid thing to do or we heard that we were saints.
One day, years after Hope was born, I was sitting on a bench at the Iowa State Fair. The stranger next to me started some small talk. She asked if I had any children and I said, “Yes, three boys and two girls.” She asked me their names. As soon as I said Hope’s name she smiled. She told me that she loved the name Hope. She had heard the sweetest story of a little girl with a heart defect and her church had been praying for this little girl because she had recently had surgery.
A perfect stranger had just told me Hope’s story. I took that as a sign from God that Hope’s story was being told whether I was telling it or not. I decided then and there that I had the choice to turn all the praise back to God or to keep quiet and let others do the praising.
A Facebook friend recently posted this quote. “When God answers a prayer, no matter how big or how small, we need to share it. It’s a stewardship issue. If we don’t turn the answer to prayer into praise, it may very well turn into pride. Giving testimony is the way we give God all the glory.” ~Mark Batterson, Draw the Circle
I want others to see the miracles that God has done in our lives. I have felt Him call and stepped out in fear and watched Him provide over and over again. This is why I tell our story. So others see the glory of God and understand that He calls us to care for the least of these. Adoption is just one of the ways this is possible. What is your story? What is God asking you to do? Don’t be afraid. It just might be the best thing that every happened to you.
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The Hard Part of Adoption
There are many wonderful things about adoption. It is beautiful and a blessing to watch little lives grow and thrive. I believe in adoption with my whole heart which is why when God called again we proceeded. But the truth is adoption is hard. These children come from a very hard place. Adoption will test you and build you and strengthen you in ways that you can’t even imagine.
There are many things that you encounter on the road to adoption. The paperwork is crazy. The first few weeks in China are trying. The jet lag is a kick in the butt. It’s not easy. I knew that going in, but I wasn’t afraid because parenthood itself is hard. Loving little people can be hard. They will try your patience. They will push your buttons. It’s just hard. Now take all of that and add to it hurt, abandonment, malnourishment. The list could go on and on. There are bound to be some issues.
Even if you adopt them from birth, they can have issues as to why they were left. They will question why they were given up. They will wonder why they have certain characteristics. Are they like someone else in their family? From whom do they get their artistic ability? Why is their hair straight? Why is their toe crooked? The unknowns are the hardest part.
I remember people questioning us at the beginning as to why we told Hope the truth about her birth story. They wondered why did we let her know that her pre-adoptive parents backed out and her mother left her in the hospital? Why? Was it because we wanted to cement her love for us by letting her know that we were the only ones who cared? Was it because we enjoyed being mean and hurting her? No! It was because at any point in Hope’s life she could send for her medical records and it is all there in black and white. We wanted our relationship based on trust. We wanted her to know that we would never lie to her.
Hope learned about her story in increments. It’s not like you throw all of that information at a two year old, but Hope has always known her story. She has heard over and over again how daddy fell in love with her right when he saw her. She knows that we fought for her. First, to be able to bring her home and let her die with family and then by trying the surgeries that could and would save her life. We told her over and over again that it wasn’t her fault. We let her know there was nothing she did or could have done. We let her know there are many, many facts leading up to her birth that we just don’t know. Her birthmother might have been scared. She might have had no support. We didn’t know all the answers but what we did know was Hope has always been loved by us and we considered her a wonderful gift.
We have never held any animosity towards Hope’s birthmother. We have always told Hope to pray for her. We don’t know the pain or the anguish she went through or might still be going through. We just don’t know so the best course of action is to pray for her and while Hope is praying for her, Hope’s heart is healed a little more with each and every prayer said.
Hope is very quiet. She doesn’t say a lot. She has always been that way. I worry that she is holding too much in. I worry about what she thinks about her heart defect, whether she will live a long life, whether we love her, how she was abandoned, etc. She says she doesn’t, but I always wondered. Then one day she said, “I get it now. Ben didn’t do anything to deserve to be abandoned and neither did Maisey. I get it.”.
These things are hard for a child to process. Jasmine is trying to heal right now. As her English gets better and her trust grows, she has been sharing more and more. She has a lot of pain and hurt and many years of abuse to contend with. But Jasmine’s light bulb moment was when we she was holding Evie. Jasmine asked me where Evie was abandoned. I told her and I showed her the picture. Jasmine said, “Why? Evie is such a sweet, pretty girl.” And then you could see Jasmine slowly get it. Jasmine then said, “Mama, Evie didn’t do anything.”
Which is exactly right. I remember when they took us to Evie’s finding place. I wondered why would they put this down as a child’s finding place? Why would they even take us there? What must have been going through her parent’s minds?
There have been a couple recent articles about the people abandoning children in China in the hatches that have been set up outside of orphanages. There are many heartbreaking pictures of parents dropping off children. Heartbreaking Goodbyes.
It’s easy for us a half a world away to stand in judgment of these parents, but we don’t know what it is like in China. There is no health insurance. There is a soaring number of birth defects. Nothing is handicapped accessible there. The old ways consider birth defects a curse on the family. I can not possible know why my children were abandoned but I can’t imagine that it happened without pain.
I know that Ben was abandoned at nine months which leads me to believe that his parents wanted him. I also know that I have children that were left in places that I don’t understand. I want to believe they were all loved and cherished and abandoned for medical reasons but I know that isn’t true. I know it isn’t true because I have a fifteen year old who is sharing her truth with me. Her heartbreaking, mind boggling, truth.
I want her to know she can talk to me about anything and that anything she shares will not change how I feel about her. I want her to know that her life had worth and that those years had meaning. We are dealing with some pretty heavy things. Things my heart would rather not hear. I don’t want to know that she was beaten because she could no longer move her legs the way she was supposed to. I don’t want to know that at the age of four her father told her he hated her. I don’t want to know that he drank bad stuff and hurt her often. I don’t want to know that her paternal grandmother tried to care for her but one day when Jasmine was “just too heavy” she decided to just leave Jasmine at the orphanage. The list of what I don’t want to know goes on and on. But even if Jasmine didn’t tell me I would still know. She has burns and scars that tell a story of their own.
Jasmine has started to journal about her feelings. She recently shared these words with us…
“Hello everyone my name is Jasmine. When I was 8 years old when I was my grandmother fell to the orphanage. I fell into the orphanage. I am very, very sad I weep and weep…… I know my grandmother did not want me. But I really really want my grandmother to go home? I said why why why do not I have a grandmother. Later, my grandmother came to see me a few times just would not come. Then I lived in the orphanage makes me feel very scared very scared very scared: But then when I was about 14 years old when I’m scared scared scared scared. Because when I was 14 years old when I could not be adopted. I vow that I want a family. I beg you. But one day someone told me that Americans want to adopt me, then I really so happy so happy so happy! I said I have a mom and dad. ”
I know that the biggest lessons I have learned have come out of my pain. I know that healing comes with sharing and talking and most of all forgiving. I know that I can help her because I once was that lost, hurting child. I have written about forgiveness in a past blog. (How to Forgive) I believe that one day Jasmine will help others heal. I believe that by sharing her story other older children might be adopted, which is exactly what she has been praying for.
I consider it an honor to be able to parent these children. I consider it an honor and a blessing to be able to help their hearts heal. I don’t take this lightly and although it is hard and heartbreaking and unbelievably sad at moments, I wouldn’t trade it for the world. I wouldn’t! It’s the truth. It is a blessing to bring God into their lives. It is a blessing to be able share how I healed from my hurt and learned to forgive. I know what a gift that is. I know what lies before them….HOPE!
Hope for healing. Hope for family. Hope for an eternity without pain. What a beautiful blessing it is to be able to share that with them. Just because something is hard doesn’t me we shouldn’t step up and do it.
I don’t have more strength than anyone else.
Truth be told, my strength comes from the Lord.
I don’t have more faith than anyone else.
I don’t have more answers than anyone else.
I don’t have more patience than anyone else.
But what I do have is perspective. Perspective for what is important. Perspective for what truly matters. Things of this world do not matter. Cars and houses and vacations and trim bodies and beautiful faces will all fade. They will all pass away. The only thing of worth is how we treat others. How we love. If we don’t have love, all is in vain. This song is says it better than I ever could.
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Providing care does not mean you care
What Kind of Doctor Do You Want To Be?
September 16, 2011In all our experiences over the years, we have seen two types of doctors, doctors who provide care and doctors who truly care. You might think they are one and the same, but you’d be mistaken. As a doctor, you might become very knowledgeable about your particular specialty. You may be able to look at a laundry list of conditions and tell exactly what my son has. You might be able to quote figures and percentages and tell me what the odds are that my son will ever walk or talk. I will tell you though that my son is not hydrocephalus. My son is not cerebral palsy. My son is not the numerous other labels that have been placed on him. If when you look at him, that is all you can see, you might be able to provide care but you won’t care.
Codey – 2 pounds 7 ounces
Edward Albert once said the simple act of caring is heroic. You might not think that it is heroic to care, but I tell you it is. Picture this:
A mother, standing at the bedside, wearing scrubs because she hasn’t had time to take a shower let alone drive home to get clothes. Her son is hospitalized, again, she’s tired, worried, worn out and afraid. The neurosurgeon walks into the room and looks at her son.
“How is he upstairs?” He asks.
The mother, who is rightly confused asks, “What?”
“You know,” he says, “how is he mentally?”
“What difference does that make?” she asks.
“Well, it just does.”
Nurses, who have been watching the whole thing unfold, are horrified by what they hear. The nurses take the shaking, visibly upset mother out of the room. Since this doctor is the neurosurgeon on call, she has to entrust her sons care him. She doesn’t have a choice. Her son needs surgery and he needs it now. She cries and worries that maybe the doctor won’t care. Maybe he won’t try as hard. Maybe he’ll just let her son go after she has fought so hard to keep him alive.
When her son comes out of surgery, this neurosurgeon comes into the empty waiting room. At the same time he sees the parents, he hears the t.v., which is blaring the Olympics. He turns away from the parents and watches what is happening on the t.v. When they ask how their son is doing, he holds up his hand to shush them until he sees the race finish. He treats them as if they don’t matter.
He was such a sweet, sweet baby!
Compare this to the neurologist who knows how much she cares for her son because he’s spent time at her bedside. He’s taken the time to come visit with them when her son wasn’t in pain. He’s visited when her son wasn’t so sick he couldn’t even stay awake. He has seen him watch Price is Right. He has seen him laugh out loud. He has seen the love they share. This is the neurologist who holds her hand while she makes the calls, once again to her family. This is the doctor who offers to make the calls himself. This is the man she will remember fondly for the rest of her life because he took the time to care about her son.
To her this doctor is a hero, as are the other physicians and nurses who took the time to care about her child. I could sit and list all the things that were done wrong. The list, which is unfortunately long, would include the care that caused my son’s severe brain damage. I could talk about the care that wasn’t given in a timely manner. I could talk about all the times I cried because the doctor wouldn’t listen. But today I’m going to talk about the positives, the people that showed how much they care.
There was a doctor who made the resident cross out all the times this resident listed mental retardation in my son’s chart because Codey wasn’t old enough for that diagnosis and our doctor didn’t want Codey labeled with something we weren’t sure about yet. Did it matter in the long run? No. Did he show he cared? Yes.
I can talk about the pediatrician that took the time to sit on the floor during my son’s first routine visit and just play with him. She tried to overcome Codey’s severe anxiety over anyone in a white coat who came near him. She spent precious time just playing with him on the floor. Would you say she cared?
Snuggling with Cassie!
I can talk about the nurse who rode with my son to Iowa City to get his trach because they wouldn’t allow family in the ambulance. This same nurse sends birthday cards 24 years later. This nurse has attended my other children’s graduation parties. I realize this level of care isn’t always possible but it has been a blessing to our family.
I can talk about the nurses who bought my son a regular crib with their own money and decorated it with Christmas lights because he had been in the NICU for 8 months. The same nurses treated us like family.
I can talk about the doctor who was honest enough to admit that if he tried to trach Codey, he might kill him. This doctor recommended we go to Iowa City where they had more experience. You might think that is wrong to admit that you can’t or don’t know something. I tell you, it is honorable. It is the right thing to do. It will earn you that parent’s trust because you proved you care more about the patient’s life than your ego.
The reality is you may be very, very bright and be a wonderful technician, but if you don’t look like you care, the parent’s won’t trust you. All it takes is a hand held, a moment to show that you care. It can be something as simple as remembering the patient’s name and taking the time to directly speak to them.
Our daughter, Hope, has a complicated heart defect called, hypoplastic left heart syndrome. Hope had a cardiologist that we have known for years. Every time we came into the appointment, we felt like we were catching him up. It was frustrating because we never felt like he put any thought into her care. We always felt like he was seeing just one frame in the whole movie. He provided competent care, but did he truly care?
Compare that to Hope’s new cardiologist. Before we even had our first appointment, he took her chart to present at a cardiology conference. Hope had a pulmonary stent that had cracked and he was unsure what the best course of action would be. He presented her case and got advice from 100’s of doctors before she was even truly his patient.
Both cardiologists were bright. Both knew what they were talking about. Who do you think we trusted more? Who showed that they cared?
If you want to make a difference you need to care and not just provide care. You need to take the time to get to know your patients. That textbook won’t tell you who that patient is or who their family is. You will never know that patient better than their parents do. Don’t talk down to the parent that spends 24 hours a day with this child. The patient is not their condition. My son is not the shunt case in bed 3. He has a name and many, many people who love him.
I know that your days are packed with people to care for. I know that sometimes the cases are sad and overwhelming. I know that sometimes it just doesn’t seem worth it to go that extra mile. I know that the hours are long and the overnight care get tedious, but with all that being said, you really need to consider if you want to be the person families remember with fondness or the person they wish they could forget?
Be a hero. This isn’t something you can fake. You either care or you don’t. If you don’t care, maybe you shouldn’t be in medicine. On the other hand, if you take the time to know the patient and support the parents and truly give of yourself – your time, your support, your caring – well, then you might just be someone’s hero.
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Fifteen….Inconceivable!
I can remember when I first learned of her as if it was yesterday.
She was a beautiful baby with a round little face.
She stole my heart from the very first moment.
She was truly a gift.
She has grown into quite the beauty.
She loves video games….
and making movies….
and special effects makeup….
and watching FaceOff.
She got to be an extra in a zombie movie.
She has a very best friend who just happens to be a boy.
They have been best friends for five years now.
She ate her very first turkey leg this year.
Dyed her hair red to be Merida for Halloween.
She definitely has her own style.
She loves photography and takes the very best pictures of the littles.
Her favorite movies are Princess Bride, How to Train Your Dragon, Sorcerer’s Apprentice, The Mummy, and Frozen.
Her favorite type of music is pop.
Her favorite songs include too many by Taylor Swift and Avril Lavigne.
She loves to draw and is writing a book called “Alice in Horrorland”.
She knows what she likes and sticks to her guns.
She isn’t easily swayed and has strong opinions on what is right and wrong.
She likes being homeschooled and chose not to get her driver’s permit because she didn’t feel responsible enough yet.
She isn’t fond of math, but likes writing and art.
She is growing into quite the young woman and I am blessed to be her mom.
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Blessed Beyond Belief
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.
Photo courtesy of Wunderkind Gallery
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?
I.AM.BLESSED!!!!!
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?
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Thankful for…
A little boy that did better than anyone expected. (Today he has walked down the halls, had his chest tubes and i.v.’s taken out, and even smiled. UNBELIEVABLE!)
A little girl that we were told was deaf but can hear enough to dance to the music.
A little girl who now understands love and has learned how to give kisses.
A little boy that has blossomed and grown.
Exciting proposals and new additions to the family.
Family that becomes best friends.
People coming together to help others.
Shaved little heads that now hold enough hair for big sister to do a silly hairdo.
Siblings that get opportunities to make great memories together. (Hope loves special effects make-up. Cassie took her to be a zombie extra in a local movie.)
Big siblings that love their siblings enough to take care of them when mommy and daddy have to be gone with someone who is sick.
Husbands who support you, dream with you, love you, and make you laugh for more than 29 years.
Friends, family and others who encourage, support and pray for you.
Meeting people who have majorly changed your lives. (Maria’s Big House of Hope, New Hope Foundation and the Chapman’s daughters words that made me rethink being too old to adopt.)
Thankful, blessed, grateful, overwhelmed, and humbled – all these and more.
HAPPY THANKSGIVING everyone!
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Blessings
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….
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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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Happy Birthday Hopey!
I don’t know if you’ve noticed or not, but most of our babies have birthday buddies. 🙂 It’s funny how that has worked out. Codey & Kyle (4/30) were the original birthday buddies, then we have Dan (8/8) and Zach (8/5), Gracie (3/23) and Evie (3/25), Maisey (4/9) and Hopey (4/11), Cassie (5/29) and Min (6/1), Eli (1/17) and Gramp, gramps (1/20), and little Lainey (12/27) – We were talking about her not having a birthday buddy and Pastor said, “She has the best one yet, Jesus!” 🙂 Anyway…..
My sweet little Hopey turns 14 today. How is that even possible? It seems only yesterday that Dan was calling me to tell me how he fell in love with a baby in the NICU! Hopey’s story was and is amazing. I love how God brought her to us. I have said over and over again that there were so many things that had to line up for Hope to come into our lives. It was truly a miracle. I have written about her story many times so I won’t go into things I’ve covered before (you can read more here Hope’s story ), but I will say I love how Dan’s heart was so moved by a baby that was left alone in the NICU.
He fell head over heels for this sweet little girl! I mean who wouldn’t, just look at that face. We took a chance, trusted God’s plan and were blessed beyond measure!
She’s been through a lot. Three open heart surgeries, numerous caths, a broken stent in her left pulmonary artery, but overall she has done wonderfully.
Hopey has a unique sense of style. You never know what she will do to get a laugh. She is full of fun and goofiness.
She loves dragons, video games, How to Train Your Dragon, Skylanders, Pokemon, and her “wall of epicness”.
She is very talented with her artwork and can make a computer do amazing things.
She loves her puppy and her new siblings.
I’m not sure what God has in store for her, but I know He has blessed us by allowing us to have her in our lives for these past 14 years.
And because my blog has become their journal (because who has time to type all of this twice), I would be remiss to not mention how teenage boys respond to my Hopey. (Heaven help daddy. You can stop reading now honey.) Hope is not allowed to date until she is 16, but it doesn’t stop boys from talking to her because we are officially past the cootey stage. Every single time they start talking to her, someone asks her what she likes. The look on these boys’ faces when this little, blonde girl mentions that she loves dragons and video games, is pretty funny. Well, it’s funny because those same boys start out with “Oh you like Barbie and Littlest Pet Shop?” and she gets that disgusted look on her face and states the games that she loves to play. I mean, seriously now, Zach is her brother. She plays “real” games. She is a wonderful combination of girly girlness and uniqueness. I love that about her.
Happy birthday Hopey Girl (as Ben would say). Wishing you all the best as you continue to grow in God’s word. May He lead you and direct you. I’m looking forward to all the years ahead as Daddy and I continue to be blessed with having you in our lives. Love you sweetheart!
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