• Gracie is 8

    Date: 2013.03.23 | Category: Grace | Tags:

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

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


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

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

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

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

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