Archive for the ‘Grace’ Category

  • Gracie is 8

    Date: 2013.03.23 | Category: Grace

    Sometimes life takes you by surprise.  Sometimes life can be going along very smoothly and then something comes along, unexpected, and it drops you to your knees.  November of 2011 was one of those times.  The week before Thanksgiving, we took Gracie to the doctor.  She had a fever again.  She had had a fever on and off for about six weeks and she just couldn’t shake it.  They nurse practitioner came into the room and said that her results were concerning and asked if I’d speak with the doctor.  Dan and I had been thinking strep or mono and they said, “We need to refer her to an oncologist.”  The doctor asked me to step out into the hall.   He questioned me a couple times about whether I understood what he was saying.  I assured him that I absolutely understood what he was saying.  I promised myself I would not cry in front of Gracie until I had a confirmed diagnosis.  I asked the doctor if he knew our family history?  He said “No”.  I explained a little bit about our children’s health issues and assured him that I absolutely understood without a shadow of a doubt what he was saying.  I then headed home to pick up Dan.

    The oncology clinic got us right in and scheduled her for a bone marrow biopsy.  They wanted us to get the results before Thanksgiving.  I was so thankful for that.  It is so hard to wait and wonder even when you know it is in God’s hands.  The results showed it was not leukemia, but that left us with more tests to figure out what she did have.  Dan was scheduled to speak in California and he left on his trip.  He was so worried about leaving her but I reminded him that there was nothing we could do until the results came back in.  I remember waking up and seeing Gracie’s little face covered in a rash.  I called him, because he had more or less just landed, and he asked for me to send a picture.  I sent a picture and he said, “I’m heading home right now.  I know what she has.  It’s lupus.”   Lupus?  Kids don’t get lupus.  I remember wondering how is that even possible?

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    I will admit to being a little miffed when we got her diagnosis.  God and I had a talk.  I will admit it was a short talk.  I have been through enough in my life to know that beautiful, wonderful things come out of horrible circumstances.   My issue wasn’t that I had a sick child.  At the time I had two children with health issues and we were set to leave in months to get our two new adopted children with health issues.  My issue was one of my healthy children got sick. I had purposely signed up to adopt and take in children with health issues.  I didn’t understand why it had to happen to Gracie too.

    Gracie’s kidneys were severely affected.  Dan pushed for them to run some extra tests and all of a sudden our scheduled appointment for three months away in February was moved up for a kidney biopsy the very next Monday, considering this was Saturday night, we knew it was serious.  Thank God for Dan and his training.  She was almost in kidney failure.  They told us it was only a matter of days until the damage would have been irreversible.   Gracie was diagnosed with Systemic Lupus Erythematosus with Class 4/5 Glomerulonephritis.  She would need months of chemo and would have to be on many medications and oral chemo for many years.

    It took 16 months but she is finally in remission.  A life with lupus is doable but until you know someone who has suffered from it it is hard to understand the issues that come with the diagnosis.  Gracie has to be completely covered in the sun or it can cause a relapse.  Considering we have a pool and she is the most warm blooded child around, this is an issue.  No more playing outside in the summer sun for hours on end.  She wakes up every morning and takes her plateful of meds.  She takes more meds before heading to bed.  Lupus means your body attacks its own organs and cells.  Out of the 11 markers for lupus, Gracie had 9.  She luckily didn’t have seizures.   Gracie’s mouth was covered in sores.  Grace’s neck was a mass of lymph nodes gone crazy.  Her face was covered by the butterfly rash.   Ironic, since she’s always been her daddy’s butterfly.  On top of everything else, she had joint pain.   It was a lot for a 6 year old to take, but she did it with grace beyond her years.

    That is the thing about Gracie.  She has always been compassionate and empathetic.  She has always had a faith beyond her years.  She has always talked about God like He was her very best friend.  She has always been the child to give away her toys even to complete strangers.  She has always been the girl who would play with the children younger than her and take whoever was at the playground under her wing. When she found out the chemo might make her lose her hair, she chose to donate it before it fell out.  Dan and I always knew God had special plans for her.   We just hadn’t planned on this.

    Now I watch my Gracie as she spreads her compassion on others.  I know there are people who won’t believe that she is the one who thought about helping with the Love Without Boundaries’ Lenten Campaign, but it was all her. (You can read more about it on her site  Hats for Gracie).  She loves to pull up LWB’s site and pray for the babies that she sees.  She is always thinking of others.  I’m pretty sure if she had her way we would adopt about 20 kids.  Gracie truly is the most amazing kid.  Tomorrow she is going to speak at a local church to raise awareness for the Lenten Campaign and for LWB, Show Hope and orphans in general.  Just think back to when you were eight.  Would that have been something you were thinking about?  I know it wasn’t what I was thinking about at the age of eight.  I am so blessed to have had another year with my beautiful butterfly.  Happy, happy birthday Gracie!  Mama loves you more than words can say!

     

     

     

  • Gracie and Eli update

    Date: 2013.03.07 | Category: Elijah, Grace

    As of yesterday, Gracie was officially in R.E.M.I.S.S.I.O.N!!!!!     A beautiful day to be celebrated for sure. We are praising the Lord that she was born in this day and age where there is a treatment.  Gracie asked if I would make her a countdown chain for the 5 years she will have to be on oral chemo drugs.  I laughed.  Could you imagine that link?  1,825 links might take me a while to make.   The truth is no one has a magic date that she will be done.  We have to play it by ear.  The doctors said five years at the beginning.  Now they say at least 3 but probably more.  No one knows for sure what to do to ensure that she won’t have another relapse.  We will do all that we can to keep her as healthy as we can.

    Gracie has reached $1,144 with her Lenten campaign for Love Without Boundaries.  I think she might actually hit her goal.  I know there are many people holding onto their change until the end of the month.  It will be fun to see the final total.  Gracie talked at our church this past Sunday and she did wonderfully.  It amazes me that she was brave enough to get up there with a microphone and her slideshow and talk about orphans and Love Without Boundaries.  She did pretty good for the first time.  She has asked to speak at other churches but so far all their answers have been no.  That has been pretty discouraging for her.  We thought since we knew people at these churches we might have a chance to spread the word about other ways to help orphans and how Love Without Boundaries works.  Alas, it wasn’t to be.  We explained that we didn’t want the church to sponsor her and that we just wanted people to donate change if they felt led to do so.  Unfortunately, we got letters back talking about how they have missionaries and they couldn’t help her.  These letters stated that as a church, they choose to do a couple big things really well and not do little things.  It makes me wonder if tons of people are asking the church for money or if they don’t want to set a precedent that you can.  Who knows?

    We are all excited that Eli’s paperwork can finally be brought to China’s attention for review sometime after the 15th of March.   It will take a miracle to have them let us adopt four at once.  It has never been done, but we are all for precedents being set and miracles happening which show the glory of the Lord.  Last night as I was going to sleep I heard Ben saying, “I am going to be Jake (the pirate) and Eli will be Cubby.  We are gonna have fun.  We play and play.”   For those of you who don’t have little ones, there is a new show called Jake and the Neverland Pirates.  It is Ben’s favorite.  Ben says he is absolutely positively sure that Eli will be coming home with us this time.  I just hold my breath.  I understand that miracles can happen and God will deserve all the credit for this one, but I also understand not everything works out the way we think it will or hope it will.  I just don’t want my little boy’s heart to be broken.  We have purposely tried not to speak about Eli very often so as to not get Ben’s hopes up, but Ben will not let us forget.  He prays for his didi and he dreams about his didi.  He is certain Eli is his didi.

    I love how things have lined up for Eli.  It has been an amazing journey from the very first time I saw his sweet face.  From the very first moment I saw him, I have thought I was his mama.   It is so hard to explain that to people.  How can you put into words the fact that a mere picture can take your breathe away?  That from just seeing that picture you would go to the ends of the earth to protect him and bring him home.  That you cry at night because you know he is still in an orphanage, with a heart defect, and you can’t even hold him and make him feel safe?  How do you explain that you know, just as surely as if he had grown in your womb, that this child is yours?  I hold on to the fact that my heart has been taken over by the sweetest little boy, who I long to hold, and I trust that God has led us to him.  Someday soon I hope to be able to share his picture with all of you.

    As always, thank you for keeping our children in your prayers.  I know that every prayer reaches God’s ear and every prayer helps.  We are humbled that you would consider keeping us in your prayers.

  • Gracie’s Lenten Project

    Date: 2013.02.27 | Category: Grace

    I realized that I have shared this with friends on Facebook, but not everyone has Facebook.  I thought I would share it with my other friends who have been following Gracie’s story over the past year.  Gracie has been feeling much better.  She is still not in remission, but she has been feeling very good.  She continues to take many medications daily, but she always does it without complaining.  She has a check up in March and we are hoping that she will reach remission by that time.  It’s been 18 months, so we are all ready for that day to get here.

    Gracie truly has the most amazing, compassionate heart.  She saw the Love Without Boundaries (LWB) Lenten Campaign on my Facebook and decided she wanted to be a part of it.

    Gracie has a special place in her heart for orphans and she has her own page on the LWB site to collect donations.  She started out wanting to donate the $50 she had been saving for a laptop.  With a $7 allowance every two weeks, it took her quite a while to save up that much.  I asked her if she was sure and she said, “That they needed it more than she did.”  Her goal at the beginning was to raise $100, her $50 plus another $50.  Within minutes of posting it on her “Hats for Gracie” Facebook page, a friend of the family, Mary, matched her.  Gracie was ecstatic and tried to decide what her goal should be now.

    We received an e-mail from Julie at LWB who informed us they had just purchased 20 boxes of formula and it had cost them $1,694.  Gracie decided that was going to be her new goal.  At the time, she had raised $170.  I told her that she had 10% of the amount needed and maybe she was setting her goal a little too high.  She then informed me “That she didn’t ask for $1,000,000.  Now that would be a lot of money.”   She prayed about it over night and decided this was her new goal.  As of yesterday, she has raised $1,000 with the help of friends and family.

    Watching her feel empowered to help orphans has been a wonderful and amazing thing!  If you want to collect your change over the next month and contribute to her Lenten Campaign you can donate directly at  http://www.lovewithoutboundaries.com/get-involved/heroes/fundraising-events/gracie-ellsbury/

    Thank you for considering helping these adorable babies this Lenten season.  If you would like to see some of their sweet faces you can go to the Healing Homes page on LWB’s site.  True Children’s Healing Home

  • The smallest of kindnesses really do matter

    Date: 2012.12.30 | Category: Grace

    As many of you know, my daughter Gracie has a Facebook page that a friend set up for her back when she was first diagnosed with lupus.  Gracie was going to have to be on chemo and there was a good possibility that she would lose her hair.  Dani thought it would be fun to have friend’s donate hats for Gracie – thus, the Facebook page entitled “Hats for Gracie”.  She never did lose all her hair. Although, when it started to fall out she opted to cut it off and donate it rather than just lose it.   From the generosity of others, Gracie has been able to take hats to the University of Iowa Hospitals.  She has sent hats to the Jessie Joy Rees Foundation.  She has sent hats to friends that have been diagnosed with cancer.  For a girl who is as compassionate and emphatic as Gracie is, it has been great fun to spread the joy to others.  Plus, now she has the chance to start making hats for children in orphanages in China.  Dani’s idea to encourage a little girl has led to others being encouraged.  It has allowed Gracie a way to take something bad that happened and turn into something good.  Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

    Gracie has been through a lot this past year.  She has stage 4/5 systemic lupus erythematosus.    You can read more here:  http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus   Most people hear the diagnosis, Lupus, and they don’t think much about it. They hear about flares and remission but it doesn’t really make an impact unless they know someone who has been diagnosed.  For Gracie it means not being able to be in the sun for any extended period of time because this might cause another episode.  It means lots of sunscreen for something as simple as going outside to go to a store.  It means being completely covered by clothing all the time.  Not a big deal unless you are an extremely warm-blooded child like Gracie is.   It means taking cellcept (an oral chemo drug) for 5 years.  It means daily steroid use and other medications.  It means lots of doctors appointments and tests and blood draws.  60 years ago her diagnosis was a death sentence.  Today she stands a good chance of a long life and we know how blessed we are.

    I’m writing this not because of what Gracie is going through but because through it all complete strangers have signed up to “LIKE” her Facebook page.  People she doesn’t know have commented and said prayers.  She loves that people are praying for her.  It really does lift her spirits.  She gets so tickled when Dani posts something and people respond.  Just yesterday Dani asked if we could get to 350 likes and this morning we are at 385.  It amazes me that strangers would take the time to do that. It also shows me how the little things we do really matter.  That smile you give someone in the store – it matters.  When you take someone lunch or donate $5 to their cause – it matters.  When you compliment someone on how they look, what they are wearing, or how they are behaving – it matters.  When you take a moment to wish someone well or send a card saying that you are thinking about them – it matters. Don’t ever forget that.  You may not hear a thank you, but it truly does matter!

    We don’t hear these stories in the news because they are small little instances and don’t really sell papers or magazines.  Can you imagine if the headlines read “Grandma, 82, ecstatic because 200 people wished her a happy birthday. She feels cared for and like life had meaning again!”   It would be nice but it’s not likely to happen.

    Gracie’s headline from yesterday would read something like “Little girl was ecstatic Saturday because 53 random strangers took a moment to hit a button and let her know that she was cared about!”   You have no idea how much that means to her.   She really is a brave little girl who doesn’t complain about taking medicine every day and night or sitting through hours of infusions or getting poked for lab draws or having to sit through way too many different doctor appointments.  She is a compassionate little girl who has a faith that is unbelievable.  Thank you for brightening her day!   THANK YOU!

     

  • Fun Friday Video

    Date: 2012.07.13 | Category: Benjamin, Grace, Maisey

  • Fun Friday Photo

    Date: 2012.07.06 | Category: Benjamin, Cassie, Grace, Maisey, Photos


  • Surrounded by miracles

    Date: 2012.06.25 | Category: Benjamin, Codey, Grace, Hope, Maisey

    Many people look at my life and think it’s crazy.  They tell me they could never do it.  They see only the health issues.  I don’t see those things when I look at my children.  I see beautiful, happy children full of life and compassion.  I see miracles all around me.  Here are just a few of them.

    Recently we learned more about Maisey’s story.  We knew her time in the orphanage was rough. We had heard stories of babies who weren’t able to feed right. We knew that the House of Hope had found her, took her to their foster home and nursed her back to health. What we didn’t know is that when they found her she weighed 3 kilos (6.6 pounds) at 6 1/2 months old.  My poor baby was starving.  I hate to think of her lying there crying and not having any comfort. She is so sweet and so funny.  She has brought so much joy to my life.  The miracle that is her life is so amazing to me.

    Becoming an Iowa girl!

     

     

     

     

     

     

     

    We had also learned that our sweet Benjamin probably shouldn’t have been put on a list.  They’ve opened up the special needs category a little, but we have been told that China doesn’t put children who have poor prognosis on their adoption lists, but somehow Benjamin found his way onto one. Don’t know how it happened but I’m so blessed that he did.

    He sang "Happy Birthday to me!" all the way through Target.

    We were told numerous times that Codey wouldn’t make it past the week, then a month, then a year.  I don’t know how many times we called family down because they said he wouldn’t make it through the night.  We were told he would be blind (he isn’t), deaf (he isn’t), and in a vegetative state….well, see for yourself.

    He's a happy boy!

    Then there is Hope, whose biological parents lived in the south, came to Iowa to deliver for pre-adoptive parents who lived on the east coast.  I don’t understand it, but I’m so happy that it happened.   On top of that is the miracle that Dan was in the unit and heard her story.  Not to mention the miracle that she  made it through all her open heart surgeries. I am so blessed to have her in my life.

    She is such a pretty girl!

    Or the fact that I just happened to have a routine ultrasound where they picked up my blood vessel rupture with Grace.  I was having no pain and no contractions.  Everything felt fine.  They said just a few more hours and she probably wouldn’t have made it.  Our doctor and Dan’s friend said after he pulled her out, and now that he knew she was all right, he could say that was the most blood he had seen and had a baby come out okay.  Add to that, the fact that I was 40, had my tubes reversed after 12 years and got pregnant the very first month.  The doctor asked if I wanted them tied again to which I replied a resounding YES!  He said good because I don’t know how you got pregnant any way.  One tube is way too scarred and the other doesn’t even look like it’s hooked up.  The GRACE of God is alive and well in my life.

    Grace has the most compassionate heart!

    My life is full of happy, wonderful miracles!  I am so very, very blessed every day to get to be their mama.

  • Gracie Update

    Date: 2012.05.30 | Category: Grace

    Today was her last dose of  i.v. chemo.  The doctors say she is in partial remission.  Her kidneys are doing much better, but her lupus is still not completely controlled.  Her complements are still not normal, although they are close, and she is anemic again.  They wanted her in remission before changing her to the oral chemo but decided that because her lupus was such a severe case that she will likely relapse and need cytoxan again.  You can only have so many doses in a lifetime so they want to save some for the next time.  She will most likely be on cellcept for 5 years after the date they declare her in remission. That seems daunting.  Sometimes it seems overwhelming.  I’m so very happy that there are treatments available for this.  If you read about this back in the 1950’s, the survival rate was 0.  I am so happy that there are treatments.  I am happy to have my little girl.   She is an unbelievably special girl in so many ways – her faith being one of the biggest ways.  I am blessed.

    I thought I’d share my Hats For Gracie post….. (For those of you who aren’t friends with me on Facebook.)

    This is a little embarrassing but I thought I’d share that life is all about perspective. Everything is how you look at it. You’d think I’d have it down pat by now, but I still need reminders every once and a while.  Yesterday we received another bill for Gracie’s care, another $1,982 bill to be exact and I complained. Mainly, I complained because you can’t tell what you’ve already paid or what it’s for. They just ask for the money and make it due in 3 weeks. I then realized Grace was in the room. Later I decided I should say something to her because I didn’t want her to feel bad about the bill. I told her that I wasn’t mad about the bill so she shouldn’t worry about anything. She told me “I think $2,000 is a small price to pay for my health and my life.” Truer words have never been spoken. Perspective. I think I’ll get me some. 🙂

    Previous Day’s Hats For Gracie post….

    Last night as I was tucking Gracie in she told me that she didn’t like having to wait until the sun went down to swim, that she was really kind of tired of medicine and she wasn’t happy that she would need another pulse of steroids on Wednesday with her chemo. She told me that she didn’t think lupus was very nice. She also said she understood that God is perfect and His plan is perfect so He must have some reason for all this so she would try her best to be happy. She said, “Sometimes happy takes work but it’s worth it.” Good advice from a 7 year old so I thought I’d share.

     

  • I just want to go already….

    Date: 2012.02.23 | Category: Benjamin, Grace, Maisey

    I was talking to a friend of mine yesterday about going to China.  They have a little girl (who is as cute as can be) that they adopted from China.  Every time I see her I just want to squeeze her.  🙂  We were discussing how sad and scared her daughter was at the very beginning.  My friend said the very next day when they gave their daughter a second bottle it was a turning point.  She was amazed that there was more food.  That just breaks my heart, especially because Benjamin hasn’t grown in the past year. Maisey is 2 and he is almost 4 and there is only 1 pound difference.  Kids with heart defects need extra calories just to grow.  I think about him there in the orphanage needing and wanting more food and it just makes me want to cry.  I hate that my children have had to fend for themselves.  I’m happy that there was a place for them to go.  I’m happy that people have cared for them, but I hate that this world is so imperfect.  I hate that they were abandoned.  It truly breaks my heart.

    On a different note, I took a bunch of stuff to Goodwill today.  Did my spring cleaning early because I’m afraid my spring is going to be very busy.  We have stuff in boxes that we carted from Iowa City 10 years ago.  As I was looking at the stuff, I kept asking myself why have you held on to this?  Now was a wonderful time to just go through everything.  My motivation?  Watching my mother-in-law go through her father’s house full of 90+ years of papers.  She found papers from the 1920’s.  I don’t want to do that to my children.  Although, the papers were kind of cool to look at.  As I was dropping off my stuff at Goodwill, I was thinking about all the useless, unnecessary stuff I buy.  The gentlemen at the door was talking to Grace about the clothes that were being packed up and how they send some of them overseas to people who don’t have anything.  Gracie was very touched by that.  Grace & I discussed how it’s hard when you see something pretty and you would like to have it, but you don’t really need it.  We should just walk away and see if we even remember it in a week.  How much better would it be to give that amount to someone else?  I have done so many things wrong with my money.  It makes me want to be better.  Which led me back to Maisey & Benjamin, I’m so happy they will soon be part of my family.  I’m also sad that there are so many hurting kids out there without a family.  I may not be able to adopt any more, because the legal system frowns at adopting over 50 – which I suppose makes sense.  I can, however, sponsor some orphans.  I may get up to that 12 child mark that I once talked about in high school.  Sounds like a good goal to me.

  • Waiting….again….

    Date: 2012.02.17 | Category: Benjamin, Grace, Maisey

    I was so happy when they said that we would be leaving on the 29th.  The agency said it was really short notice, but they wanted to get us there as soon as possible.  I didn’t know what to do.  For one thing, Grace has her chemo on the 29th.  I hate to not be there.  In reality, she has done so well.  Her hair has thinned, but she hasn’t lost it all.  She gets a little sick to her stomach, but has only thrown up once.  Thanks in part to Zofran!  Dan will just get back from his work related trip, but we could make it work.  We e-mailed everyone.  We rearranged everything only to have the agency say that we can’t leave until March 7-9.  WHAT?  More waiting? I am so tired of waiting. Yes, I believe in God’s perfect timing.  Yes, I believe in His perfect plan.  Yes, I am still human and am still working on perfecting my patience. 🙂

    The truth of the matter is I do want to be here for Gracie and it is only one more week.  An extra 7 more days.  168 more hours.  Though it’s depressing that I won’t be back for Gracie’s birthday on March 23rd.   It’s her 7th birthday and she is so excited.  What a great gift that would have been….well, I guess will be.   We’ll only be a couple days late.  Then our family will be together – well, almost everyone will be here.  That is a whole other story for another time.

    We are coming little ones.  We are so close now.  19 more days…

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