Archive for the ‘Benjamin’ Category
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Thankful for…
A little boy that did better than anyone expected. (Today he has walked down the halls, had his chest tubes and i.v.’s taken out, and even smiled. UNBELIEVABLE!)
A little girl that we were told was deaf but can hear enough to dance to the music.
A little girl who now understands love and has learned how to give kisses.
A little boy that has blossomed and grown.
Exciting proposals and new additions to the family.
Family that becomes best friends.
People coming together to help others.
Shaved little heads that now hold enough hair for big sister to do a silly hairdo.
Siblings that get opportunities to make great memories together. (Hope loves special effects make-up. Cassie took her to be a zombie extra in a local movie.)
Big siblings that love their siblings enough to take care of them when mommy and daddy have to be gone with someone who is sick.
Husbands who support you, dream with you, love you, and make you laugh for more than 29 years.
Friends, family and others who encourage, support and pray for you.
Meeting people who have majorly changed your lives. (Maria’s Big House of Hope, New Hope Foundation and the Chapman’s daughters words that made me rethink being too old to adopt.)
Thankful, blessed, grateful, overwhelmed, and humbled – all these and more.
HAPPY THANKSGIVING everyone!
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PINK and lovin’ it!
We woke up bright and early to be at the hospital at 7 a.m. for surgery. Ben wore his Superman shoes, cape, t-shirt, coat, and hat that big sister, Cassie, had knit him. He ran to the door and said “Let’s go fly in the airplane mommy!” I was prepared for a fight but he didn’t get upset. We talked about trust and faith. We talked about what it would mean for him to feel better. I asked him if He trusted God’s plan for him and he said, “Yes! Ok, let’s go mommy!” We headed off to the hospital where he was pretty happy right up until they asked him to take off his cape.
You can’t ask SuperBenBen to take off his cape. They quickly gave him a nice dose of versed and Ben was soon happy again. A drug that removes the memory of going off to surgery without your parents and puts a smile on his face, is okay by me.
We had updates throughout the day that things were progressing as planned. At around 2:30 Dr. Del Nido came out and told us the good news. Ben had tolerated it fairly well. The were able to switch the great arteries instead of doing the Senning procedure (atrial switch), they took care of his PDA, did the pulmonary artery banding, and left his VSD alone for fear that he would go into heart failure if they fixed it. He had a fair amount of bleeding but we were expecting that with his platelets being in the low 20’s.
Many people have asked why we went to Boston. It has been a very hard decision. Most children with Ben’s defect that are born in the US get fixed at 7 days of age. There aren’t a lot of 5 year olds with uncorrected TGA out there. We chose to go to a place with the highest volume of kids that are older getting repaired. There are quite a few good hospitals with a high volume of heart surgeries across the US. With Ben’s repair, it came down to CHOP (Children’s Hospital of Philadelphia) and Boston. Dr. DelNido did the best job of answering our questions and Dr. Marx was very kind towards our family and our situation. So off to Boston we went.
This afternoon we are praising a God that would give Benjamin a hope and a future. We are thankful for every day we have had with this little guy. He truly is the sweetest soul. ‘Who knows what the future will hold for our little guy but we have now given him the best possible hope for a longer life.
He will be sedated for at least 48 hours and then they will start waking him up and see what happens.
In just a little bit, I will post a picture on this post of his pink fingers. His oxygen saturations were 100% for a while. I’m still waiting to be let into the PICU, but as soon as I see those fingers I will be doing a happy dance and I will share that joy and the picture with you.
Thanks again for all the encouragement and prayers! We are truly blessed to have so many prayer warriors on our side.
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Tomorrow is filled with Hope
This whole trip is about hope. Hope for Ben to be pinker (his sats are in the 65-70 range). Hope for a longer life, a healthier life. Hope when we had none. Hope is a beautiful thing.
We had a horrible flight from Chicago to Boston. A flight that was bad enough that I started writing a long text to Cassie telling all the kids how much I loved them. I was determined to send it before I died. There were no announcements from the cockpit. We were in the very back row and the stewardesses were saying things like, “Why are we going back up? Why is this taking so long? Why are we still over the water? This is the worst flight I have ever been on.” You know the usual nice comforting words you are wanting to hear when you frightened. And to top everything off in a plane that was eerily quiet, there were the lovely sounds of vomiting all over the place. It was quite the ride.
I have never been so happy to hear the words, “Welcome to Boston.” Ben on the other hand walked out of the plane like he was going to a _______. I could not for the life of me remember what this saying is so I asked Dan to look it up while I continued to type. What is the phrase he gives me to use? “He came off the plane slower than a one-legged dog on tranquilizers.” I need a book on phrases, that’s all I’m saying. And yes, I have chosen to be married to this man for 29 years. We celebrated our anniversary by flying to Boston. We truly know how to have a good time.
Ben drug his feet and slowly went down the aisle. The stewardesses asked if he was okay. They had seen him enter the plane, skipping down the aisle, telling everyone down all 37 rows, “Hello”, especially the girl in row 21 who was wearing a Superman t-shirt. I told them he didn’t want to be in Boston because he was having heart surgery. They said they’d pray for him and he got a little boost in his step.
He did pretty well the first night. He was doing great at pre-op until anesthesia came in with their scrubs on. Then it was all bets off. He just kept saying, “Hey, let’s go get on that plane. That would be fun. Let’s go home. I miss the kids.” and mommy’s heart broke.
I am thankful for the chance for Ben to get healthier. I feel blessed that there is hope and that God has provided so wonderfully for him. It is still hard though. But to ease my mama heart, we have had numerous “God winks” through the whole trip.
We checked into the hotel and they handed Ben a book called “Where’s Hope?” and a little bear named Hope. He was thrilled and since this whole trip is about Hope, I thought that was very fitting.
Remember the little girl Paige we saw on our last trip? Well, we even rode the elevator with her. What are the odds of that?
We have had people, who I barely know, tell us that they are praying for Ben. I am always humbled and blown away by this fact. The number of people who care about our children just amazes me. Miss Deb, the children’s homeschool advisor and family friend for over 10 years now, celebrates her birthday tomorrow. What does her Facebook post ask for? It asked that if you were going to wish her a happy birthday she would be thankful but she asked everyone to say a prayer for little Ben too. Friends that we just met on our last trip to Boston, friends we have never met except through Facebook, and friends that we have had for a long time, have shared Ben’s story and asked for prayers. These are the kind of friends that we have. The kind of people who care and pray and comfort us when our hearts are fretful.
I’m not worried because I believe Ben is in the best hands and I believe that God has more in store for my little guy, but I am also at peace knowing no matter what happens Ben will be healed. I will see him again. God is good and I trust His plan. I know this plan is perfect. There is great peace in giving up control (which I only delusionally thought I had) and trusting in God’s plan no matter what it may be. The peace you get when you finally just follow God’s lead is amazing.
But it doesn’t mean your heart doesn’t hurt. It hurts when he begs to go home. It hurt when I was scrubbing his little chest with the pre-surgery scrub knowing that this would be the last time I would see it without a big scar. It hurts knowing what he will be going through. There will be pain. There will be fear. There will be anger. Those all hurt a mama’s heart because we always want to make things better and we know a kiss and a band-aid isn’t going to fix this one.
We have been told that they are taking the more conservative route. They will be doing the arterial switch with pulmonary artery banding. They are going to leave the VSD alone because they are worried about it causing heart failure. We have to be at the hospital at 7. They said it will take 1 to 1 and 1/2 hours to get him ready and 5 hours for the surgery and then they will close him and take him to the PICU. They are planning on keeping him completely sedated for 3-4 days. They have told us to plan on 10 days if everything goes perfectly.
Thank you again for all the prayers and well wishes. Thank you for being part of our families story. It truly is humbling and overwhelming and so comforting during this time.
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God winks….
While we were in Boston, we met a little girl named Paige. We met Paige while we were waiting in line to get a blood draw. Her dad had gone to sign her in. I was ahead of him in this same line. When I came back to where Dan and Ben were sitting, I found my husband chatting with this sweet little girl in a wheelchair. (What many people don’t know about my husband is that he is a sucker for little kids, especially sweet little kids who are ill.) This little girl was full of personality and smiles. She told us she gets twice a week blood draws. She knows what fun picture is on every CT scanner. Just a little over two weeks ago she had a liver/kidney transplant. Yet, here she was smiling her huge smile and showing us her Spider-Man shirt complete with webs under her arms. She loved Ben Ben’s Superman cape. She discussed many things. She had one of the sweetest souls around and a tiny voice full of life and joy. She asked Ben if he had any brothers and sisters and when Dan answered 11, she took a minute and answered “Your house must be really noisy.” She is wise beyond her years, which was all of 8. Dan stopped to talk to her after Ben’s blood draw and wished her well.
We walked off and Dan got very quiet. I asked him what was wrong and he said she is very, very sick. He hadn’t asked the dad what she had but it was easy to see the sadness in her daddy’s eyes and to connect the dots with all she had going on. I wished I had gotten her full name and address so my children could write to her. But with the wonder of all that is google I found this picture and some articles on her. Her family talks over and over again about their faith. I could see all of their faith and love shining through in this little girl’s face. She knows she is loved. She knows there is a bigger picture.
I have seen this over and over again. Sometimes children who aren’t dealt the fairest cards in life, really truly are wise beyond their years and have sweet, sweet souls. They have faith that is unwavering. They see joy in every day life, where we get caught up in the smallest of troubles, that won’t matter a year from now, they stay in the moment and enjoy life. I know this is true because I have been blessed with many children with just such souls.
After having gone to China and come home with not one, but many of these souls I would say that blessings abound when you put away your fear and step out and take that first step in faith. I know that there will be those who call me a Pollyanna. They think I only see the good and walk around with my head in the clouds, but people that say those things are the same people who have never met my children in person.
Everyone who came in contact with Ben while we were in Boston commented on what a sweet boy he was. You have to remember this was during a very stressful time for him. He doesn’t want to be sick. He doesn’t want to have surgery. He is afraid and yet he went in to that hospital, dressed in a Superman cape and Spider-Man gloves and treated everyone kindly and with a big heart.
This same little boy others say wasn’t worth the money spent on his adoption because of his shortened life span, finds joy in everthing. This boy is a treasure. He believes in God. He prays every time he hears a siren. He prays for the families of the victims, he prays for the driver and the workers, and he prays for whoever is hurt. This boy is a treasure. This boy is a gift worth more than any small adoption fee. This boy was fading fast in an institution and I wonder how many more souls, that are just like Ben, are there……waiting and waiting and waiting because they have a diagnosis that is out of the perspective families comfort zone. How many are waiting, just like Jasmine? How many?
We were told that there was no fix for Benjamin and while that is true, we learned this week at Boston Children’s Hospital that there is a surgery that we can do to make him pinker and slow down the progression of his pulmonary hypertension. That is wonderful news. Ben will have surgery Thanksgiving week and we will be thankful for a chance at a longer, healthier life.
I talked to many families in the waiting room at Boston Children’s Hospital. We heard story after story of families being told there was no hope only to have other families reach out to them and encourage them to get a second opinion. All of them heard what we heard, there is hope and HOPE is a beautiful thing.
Boston was very thorough. They were very kind. Everyone treated Ben very well, so well in fact, that he is okay with going back and having surgery. Steve our nurse for the three days we were admitted, found Ben a Spiderman car to give to him when he came back from his cath. Ben hasn’t wanted surgery, but Ben needs surgery. He is sleeping more, unable to walk very far without sitting down to catch his breathe, just not gaining weight, and dropping his sats in the low 60’s. He needs this procedure and for him to feel comfortable with going back is a such a blessing to us.
We are feeling very blessed this week. Everything went well with Ben. Mom got moved to a skilled nursing home in Fort Dodge where she can get rehab to regain her strength and all her friends and more of her family are closer. Plus, to top it off we got put in touch with the Muscular Dystrophy Association who are loaning us a power wheelchair for Jasmine to use until things can be worked out with the insurance company. Jasmine needs her independence and this is one way for her to have it.
On another note, in an only God could moment, while I was sitting in the pre-op waiting room, I received a message on Facebook from another mom in one of my heart groups on line. She asked if we were in Boston, from a post I had made asking for Prayers for Ben. It turns out this family recently adopted a little girl from China who was in Boston having surgery that very day. Plus, they live about 20 minutes from us at home AND the adopted another son from China who is hard of hearing AND they homeschool. You can call it a coincidence if you want but I know it was a Godcidence. Please keep their daughter, Ruthie, and her family in your prayers. She still has many more days in the hospital and we know what a roller coaster ride that can be.
Where we were staying, there was a food court attached to the hotel. Ben loved the noodles at the Asian restaurant. He opened two fortune cookies while we were there and each one said something about “heart”. One of my Facebook friends called them God winks. I like that!
Hoping others will step out in faith and adopt more of these special children both domestically and internationally. People are called to many different places. Who are we to question what God places on our hearts? Pay attention to the God winks that are all around you. He speaks to our hearts in many, many ways.
Thank you again for the prayers. Please keep Ruthie and Paige in your prayers also.
Keep your heart open to wherever God may be leading.
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God is good!
Every day I wake up and look at this little face and I feel so blessed. God worked miracles to get him home to me and I never, ever take a moment of that for granted.
He is seriously the cutest little thing. He is the lowest maintenance of any of the kids. He is happy almost all the time and says thank you for everything. He’ll eat whatever you put in front of him. He’s helpful and kind and loving and just so sweet! He is Evie’s best friend. I think about what he was like in China sometimes. He cried A LOT! I slept standing up because you couldn’t even sit down holding him when he was sleeping. He refused to eat or drink for the first three days. We had to force him to swallow fluids off of a spoon. He whined about everything. He wouldn’t come to me. He only wanted Dan for the first day. It was hard.
Had I not been so in love with him for so long, I’m not sure what I would have done. He was a handful. But I knew he was meant to be my son from the very first moment I saw his face and I knew there was no turning back. Over the past year, I watched as God worked out miracle after miracle for him to join our family and I knew there was a plan…no matter how afraid I was.
We waited months for his paperwork to become available. We were sure his paperwork was just not going to become available so we proceeded with Lainey and Evie. Then China allowed us to add Jasmine because she was going to age out soon. Eli’s papers became available after we had already agreed to the three girls. We decided to proceed knowing we may have to turn around and go back to get him after we got home with the girls. But we had prayed and prayed and every one of those prayers were answered. First, that they would allow us to get preapproval, then we watched as papers were expedited at every step. Everything was falling into place. We could have everything done before we traveled. Would China allow us to add him so that we didn’t have to turn around and travel again six months later? They told us the odds were against us. The chance of them allowing a fourth child during one trip was unheard of. But the doors opened and we once again got the okay. There were just so many things that had to happen for him to become our son and every one of them happened.
God is good. SO.VERY.GOOD!
It would have been almost impossible to go back and get Eli with my mom being sick and all the surgeries with Ben and Evie. I’m not sure with as hard as it has been with Lainey that I would have thought I could handle another child. But God worked all things out in perfect time and I am forever blessed by being allowed the blessing of being Eli’s mama.
Right now it is midnight. In just a few hours we will travel to Boston for Ben’s heart catherization. It’s been a rough decision and he is not happy about surgery in any way, shape, or form. He has cried almost every time we have talked about it. It is hard with a five year old. You don’t want to just spring it on them, but you are limited by what they can understand. So you talk to them about the procedures and hope that you haven’t said too much.
Today a dear friend stopped by with a Superman shirt that is extra awesome and a Hot Wheel dinosaur car. Ben was thrilled. It took his mind off of things for a while. He felt special because she stopped by just for him. He had to put the shirt on right away and hasn’t taken it off yet. I told him I should wash it if he is going to wear it tomorrow, but he said “No!”
There is a home that does daycare on the corner on one of the streets on the way to Mercy Hospital. We actually stopped there a week ago when they were having a garage sale. They had a little tykes pirate ship in the yard that Ben has wanted. Every time we drive by it, he comments about how cool it is. We have looked on line and couldn’t find the same ship. I’ve even been checking Ebay and Craigslist. Nothing! But this afternoon as I was driving by on my way to visit mom, I noticed it was for sale in their yard. This yard has a ton of Little Tykes play houses and cars and slides, but the only big thing for sale was the pirate ship. I was in Cassie’s small car so I rolled down my window and asked her if it was indeed for sale and how much it was. She said $20 and I happily paid it and asked for her to hold it for me. Later I drove the bus over to pick it up. I asked her why she sold the ship and she said that for some reason she just thought it should be sold. I then told her about how Ben has driven by her yard for over a year now and has always commented on that ship. I told her that he was really upset about leaving for surgery tomorrow but the ship had made his night. All the way home, Ben commented over and over again how this was THE.BEST.DAY.EVER!!!!! As we drove off, she said she would be praying for him.
Again I say, “God is good.”
Ben hasn’t been upset tonight. He went to bed holding his dinosaur car and talking about what a wonderful, awesome day it was. I am feeling very blessed tonight and am as ready as I can be for the next step with Benjamin! How could I not be when God shows himself in even the smallest details of my little boy’s life?
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Ben Ben is 5
I can remember how I felt the day I first saw his picture. The little “Tigger” we had been praying for.
I prayed and prayed that the family, who had his paperwork, would decide to not lock his file. I knew he was my son from that very first moment. I still remember Dan’s face when I came home and asked what the cardiologist had said. Tears on his face, Dan told me that he was our son and we may not have him long but we were going to go get him and love him every single day until God called him home and “Tigger” would never, ever be alone again. I have loved Dan for a long time, over 30 years now, and I can honestly say that I have never loved him more than at that very moment.
I can still vividly see Ben’s sad, sweet face when he walked through that door at the Registration Office. I can see Dan’s face as he ran to the door to get his boy and how he held Ben so close. How Benjamin held on to Dan and would not let go. I can still picture that outfit, he came in, that looked like a Harley Davidson biker jacket.
I can hear his very first laugh. He sounded hoarse, like he hadn’t laughed in a very long time.
I remember how he stood there and stared at our dresser drawer full of food and slept with his bowl and spoon. I remember crying because he was so thin. My heart hurt knowing what he had gone through in the 3 1/2 years before he became our son.
I remember him looking so sad every time we left the hotel, like he was afraid we were going to take him back.
I remember thinking it was all worth it no matter how much time we got. He was worth it.
He asked that we call him Ben Ben. We didn’t know why until we traveled to China this year. In China, it is a form of endearment to double up child’s first name. I remember how sweet he was with Dan and how much they loved each other from the very first moment they met.
Just recently we discussed Evie’s scar and Ben told me that he knows that he and Eli need surgery for their hearts but he was okay with not having it and Eli could just go. He is nervous. He understands that we are worried. He understands the hushed tones and the planning. He has been hospitalized a couple of times now. Ben gets tired. He still takes naps. He is still very, very blue.
He rests a lot, but he still has fun. He runs and plays and drives his cozy coupe all over the house.
He chases his siblings all around the yard and house. He is a happy, happy boy.
He is truly the sweetest boy. He is caring and thoughtful. He is very, very bright. He is a wonderful addition to our family. He was a huge step of faith that brought us immeasurable blessings.
Maisey and Ben, met that day in March, for the very first time. They had never met before, but they were instantly friends. The little boy who wouldn’t talk and the girl who couldn’t hear still communicated. Maisey and Ben are still the very best friends.
Benjamin dreams of being an epic cook, a train conductor, Jake, an Octonaut or Doc McStuffins. He sings and dances. He loves Superman and Spiderman.
Birthdays are bittersweet. On one hand it means that he has been with us just that much longer and on the other hand it means another day has passed that I can’t get back and he has limited days. In reality we all do, Ben’s condition just makes it that much more apparent. We should all enjoy each and every day we have with our family. Some days it is easier to do that than others, but Benjamin makes me think about what is really important. Benjamin makes me a better person. Benjamin has made my walk with Christ all that much closer. I have a trust in God’s plan that I never had before. Benjamin made taking a chance on Evie and Eli, an easy decision because we knew how blessed you can be when taking that first step in faith.
Ben has a joy for life that is contagious and a style that is all his own. I remember praying that I would get at least a day with Ben and now I have been blessed with 538. 538 glorious days! What a blessed mama I have been to be able to call him son.
Today we will be happy. Today we will have a Jake and the Neverland Pirate’s party. We will eat cake and ice cream. Today we will not think about the future or what may be. Today we will celebrate all that Ben’s life is. Ben has big plans and has asked all his siblings to dress up for the occasion. Today we will sing Happy Birthday and hold our boy tight. Praying that we have another year as beautiful and blessed as this one. Today, we will live in the today. Because, truth be told, that is all that any of us really have.
Happy birthday sweet Ben Ben. May God continue to bless you and hold you near. What a blessing you have been to our family.
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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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Celebrating Gotcha Day
It doesn’t seem possible that it has been a year since we waited anxiously in the Registration Office for them to show up with our son and daughter. We had traveled with 12 other families and most of us were in one large room waiting for our little ones to arrive. Would I recognize Ben and Maisey when they walked in the door? I had looked at their pictures over and over for a year, but would I know them once they came through that door? One by one, children were brought in by the directors of the orphanage or the nanny who cared for them. Most parents cried. Some children cried, but most of the children were unusually quiet. It was such a moving experience. To this day, watching a video of anyone’s gotcha day brings me to tears. It is such an unbelievable moment.
Suddenly Maisey was there. She was bundled in 3 snowsuits and looked so quiet and sad. The director was gruff. Hardly said a word to us, threw her in our arms, and was gone. They didn’t return any of the things we had sent to her. They didn’t take the pictures with the disposable camera that we had sent. There was a photo album from the time she had spent in New Hope and we were thankful for her time there, but it was obvious she was not loved while she was in the orphanage at least not by the people who came to drop her off.
We waited and waited for Ben. His orphanage was 90 minutes away and it seemed like everyone else already had their child. Dan impatiently paced back and forth searching every car that pulled up for his little boy. All of a sudden Ben was there. Dan stood there, looked back at me with tears in his eyes and went to get his boy. What a moment. I still get teary eyed thinking about how sad Ben looked and how in love my husband looked. Not a whimper from Ben. No words. No fear. He just grabbed on to Dan and would not let go. Dan had been praying all year that God would allow them to dream about us and let them know that we were coming. It seemed as if Dan got his wish. Neither of the children were afraid. They wouldn’t get down and play. They just held on to us for dear life.
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- Holding Maisey for the first time.
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- First family picture of the 4 of us.
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- Ben and daddy
We took them back to the hotel and let them eat what they wanted. It took some time for them to stop eating. They were amazed at our drawer full of food. They ate for a couple hours straight. I was afraid they would get ill from eating so much. I have no clue where they were putting all of it. Ben held on to food and wanted to sleep with his bowl, spoon, and whatever he had been eating. If you moved his food, he would have such a panic attack. Yet, he showed signs of that sweet little soul by sharing his food with Maisey (who he’d never met until that day in the Registration Office).
I remember undressing them for the first time. The last pictures we had of Maisey had her looking like any other chubby baby. We were unaware at the time, but it is customary for children to go back to the orphanage while they are waiting for their family to come. Our last report said she weighed 23 pounds while at New Hope, we took off those three snow suits to find a 16 pound two year old. Ben was even worse, at 3 1/2 he weighed in at 23 pounds. Dan and I both cried tears, heartbreaking tears. It’s hard to look at your children knowing just how much they were doing without – both food and love. It’s hard to not be angry knowing that it was the endless paperwork that kept them from you for so long. We later learned Maisey weighed 6 pounds at 6 months. How could your heart not ache for all that they had been through?
As time went on, Ben’s attachment for Dan grew and grew. They were inseparable. We still hadn’t heard Ben speak Chinese or even utter a sound. The end of day 2 had him telling Dan that he loved him and speaking English words like crazy. It wasn’t what we expected. The child we were told was deaf, babbled like crazy from the very beginning and the 3 1/2 year old wouldn’t say a word for the better part of the first 2 days. But soon he was laughing and coming out of his shell – as long as we were in the room. As soon as we left the room to get on the bus or take a taxi, Ben’s fretful little face would come back. I wished I had the words to comfort him and say he was ours forever. To let him know that he was truly our son and just what that meant, but how do you explain family to a child who was abandoned at 9 months and spent almost 3 years in an orphanage?
There were adjustments while we were in China. You travel and you are 12 hours behind and naturally tired. Your children come to you with whatever issues they bring with them from the orphanage as Maisey showed from her bald spot on the back of her head. No matter how well they are cared for, it is still an institution, and institutions are dehumanizing. One of the saddest moments in China was Maisey waking up on the bed, and sitting up with her back to Dan. She sat there and just cried silent, shoulder shaking, tears. Dan still can’t talk about this without getting upset. What he saw was an orphan looking utterly and totally alone, crying out to God. As soon as she saw Dan, she laid her head on him and snuggled. He held her close and rubbed her back and kissed her little head. It was the moment I think she understood she wouldn’t be alone, that Daddy would be there to comfort and protect her. Every little girl needs a daddy and she finally had hers. She never cried those dejected, heart wrenching tears again.
This past year has had many doctor’s appointments. We’ve had wonderful news in the fact that Maisey is not completely deaf. Her speech and her signing has taken off. She is full of information that she loves to share. She even said the prayer last night. I only caught “Dear Heavenly Father….more words, more words, more words….in Jesus name Amen!” But she understood. She counts to 6. She tries to read everything. She is blossoming in so many ways. Her life has been forever changed.
Benjamin’s diagnosis was more complicated than we thought. We are still hoping to do surgery to improve his quality of life. His heart is not fixable at this point but we are hoping to bring his oxygen saturations up. We found out that Ben has ITP and have been watching his platelets for a year. His platelets run anywhere from 18,000 to 40,000. He bruises at the drop of a hat and ends up with marks for something as simple as scratching himself. It has made things more complicated with surgery and it means we have to watch him extra close, but he is doing well. He spells his name. He counts to 11. He loves Mickey, Spiderman, Jake the pirate, and Thomas the Train. We have had the privilege of loving this little boy for a year now. I remember being afraid that he wouldn’t life long enough for me to get to hold him at all and I’ve had 365 wonderful, blessed days.
I’ve spent today, with tears in my eyes, remembering where we were on day one and just how far we’ve come. As Dan said the other day, listening to those two just enjoy every moment of their lives has been so worth it. There have been tears and frustrations, but 80% of the time is filled with joy. People ask why we are adopting again. It’s so hard to explain, it is different than it was with our biological kids. When you take a child out of an orphanage, you understand that it isn’t about being able to do everything. It isn’t about being able to give them everything. It’s about taking a life and showing them what the love of family means. It is about showing them about God and His love for them. It’s about taking a life that had an uncertain, frightening future and giving them hope. It’s knowing you can do more and love more than you even believed possible. It’s been an utterly unbelievable year and I feel blessed to be able to set off on that journey again in another month. I have been blessed in ways I can’t even explain. I wish I could give you a picture of what it means to rescue a child. To really give you a picture of what that joy means. To take a life with very little if any education, no God, no future, no hope, and instead guaranteeing them a life of love from a family that adores them and presenting them with glimpse of an eternity of love with God. Gifts that have no measure, truly priceless, and I got to be a part of it. I am one seriously blessed mama.
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Update on Benjamin
I realized that I posted that Benjamin would not be having surgery on the 13th of February on Facebook, but I forgot to update my blog. After much consideration, we have decided to wait for the RSV, norovirus, and influenza season to pass before doing his elective surgery. It has been a hard decision, but after much prayer and consultation, we felt that it would be in Ben’s best interest to wait.
In honor of Dan’s dad’s birthday, the 8th of February, we will be sharing our story on http://www.28daysofhearts.blogspot.comThere have been many wonderful stories of faith and love posted already. You should check them out!
It’s hard to believe Dan’s dad has been gone three years now. We all miss papa very, very much and look forward to the day when we will all be together again.
Thank you for your continued prayers and support for our sweet little boy. We appreciate them more than you could ever know.
Now we just need to head to China to get our 3 girls. We still haven’t heard anything about Eli’s papers, but we know who is in control and haven’t given up hope of adding him to this trip. If it doesn’t work out, we will push to expedite a quick return trip. God’s timing is perfect, but mama is still impatient. 🙂
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- Hanging out with Zachary!
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- Having fun with sissy!
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- All bundled up for the cold!
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