1 Jul

Thank you to all who prayed for us yesterday.

I had to take this photo of my Lainee. It speaks so much to me of her character. This is so HER. She is careful, I would never have to tell her to be careful not to leave crumbs in the car, she just knows. She is respectful, she shares; she just asked me if I wanted a bite. I just had to take this photo. I don't ever want to forget how sweet she came to me. When she got treats at the hospital she said, "this for all the jones family." I said, "oh lainee you are so nice." She said, "mom, hug. ok, mom you are so cool". She's just hilarious to me. She said good bye to all the staff the threw out her, "seeyoutomorrow!" Not understanding what she was saying. HOWEVER, sister zinnia caught on. "NO LAINEE not seeyoutomorrow! tomorrow BEACH!!!" We laughed and laughed. She has added such joy to our family. We are all crazy for lainee grace. And I'm pretty sure she is crazy for "all the jones family."

 

Things went well.  Yesterday Chris and I took Lainee and Zinnia to the Children’s Memorial Thalassemia Center.  They are on the cutting edge, we were more then impressed.  I have read so much about Thalassemia yet learned even more yesterday.  Reversal of their bone disease, deformed facial features, the reliability of the ferriscan, organ MRIs, stemcell reduced transplant and new Xjade findings were just a few of the new things I learned.  If you are one of those people who would like more info and details I would be glad to talk.  You can email me, sometimes with things like this a phone call is easier for me, so I’m glad to give you a call.

I felt cared for, I felt respect for the doctor.  I trusted her, she was EXTREMELY knowlege and believe me when I tell you this was much welcomed!  Thalassemia is a very very rare fatal blood disorder.  Both of our girls would die without regular blood transfusions, daily chelation treatment and close monitoring.  It is a very good thing that they are here, getting proper care.

However :)

I was struggling the whole day with feeling OVERWHELMED.  I don’t know what else to call it.  Swamped maybe.

The enormity of their life long condition and all the other side effects of it can be just…a.lot.

The seriousness of it.

The way it has damaged their little bodies already.

The permanence of it all.  It just came tumbling down on me yesterday as different doctors and staff examined them.

The doubleness of it.

Good, so good of God to give them each other.

yet, it’s doubled.

it’s a.lot.

i had dressed the girls alike and boy did they look cute!  Everyone was all eyes for those two.

This was taken right before entering the hospital. So funny to me because they LOVE the free little bags that came for them from the drug company, for pharmacy. You X jade families can laugh with me. They felt so special to have something come in the mail, just for them!

Zinnia suffers from car sickness and so as I turned around to help her hold up her puke bag, I tried real hard not to let a drop end up on her dress.

We were at the hospital for about 5 hours.  I never felt like anyone we visited with was rushing us.  The head physician was lovely, smart, patient and VERY interested in the girls.  The girls had blood drawn and are also going to be part of a long term study that we agreed to.

They treat over 120 thal. patients and consult for hundreds more.

That will be the case for us.  She will write up specific plans for our girls and send it to their doctors at our local hospital.  We will tell them to follow this plan and we will consult with her once or twice a year.

have you seen the game STACK THE STATES?? Get this 99cent app. We are all loving it! Thanks for the tip from another blogger. I played it the whole ride back up to the beach. Uganda beads from my friend mary, another adoptive mom. so cool mary, thanks. I'm so humbled that God has let me be this amazing girl's mom. I tell her, "you are so brave!" She says, "mom, what brave?" UGHHH No words to describe it that she can understand. This is one very very special person. I am so blessed.

 

When the doctors left our room and we were alone for a few minutes I said to my very very very relaxed and happy husband, “I AM DYING HERE! I”M JUST DYING!  WHAT IS THE PLAN????? (in the thal.world I live in this means…when can we stop coming to the hospital every other week? when will their levels get figured out?  when will their spleens need to come out?  when will we begin pursuing a transplant?  I mean we are talking I want a PLAN!  Every other week for 3 months, then every three weeks then once a month etc….)Honey, tell them your wife needs a PLAN! ”  My dear man of faith and relaxation said to me, “Okay sweetheart, here is the plan okay?”  “Yes, thank you, OK.”  “The plan is for you to rest in the arms of their creator and walk this road one day at a time, with Jesus.  That’s the plan.”

I knew he was right.  I respect him. He is wise and good, the most generous man I know and loyal and faithful.  God spoke to me through him.  Yes, rest and trust and take it one day at  a time.

I told the wonderful head doctor that I just want to be their mom and let someone else take responsibility for their health.  I don’t want to be the one asking if this and this has been done, I want to sit back and let the doctors call me and have them make sure all the bases are covered.  She told me “that is not a reality.  you are their advocate, you must stay educated and feel bold as you approached doctors in the suburbs.  This is a very rare disease and their is new research always coming out, you read up and you show them what you are reading.  What they studied in med school is no longer current.”

So, we are thankful to have our foot in that door and thankful to stay local for transfusions with CMHC consulting.

I am choosing not to think of the longevity but to be thankful for today and for all the ways He faithfully provides.  I feel sad when I think about them being in China without me.  It TEARS ME UP.  Zinnia said yesterday, “Zinnia China doctor, zinnia cry.”  I said, “Oh Zinnie, I wish I was there for you.  I’m so sorry.”  She said, “It’s okay mom,, it’s no problem.  Jesus give me mommy now.”

yes there was a macdonalds in the hospital but these two were super excited about the noodles and chicken in the cafeteria

Christopher, Jonah, Zinnia and Lainnee and I had an amazing conversation late last night.  I felt like we were on holy ground.  we told the girls about heaven, dying and being with Jesus in Heaven. It started out because Zinnia said, “please please please mommy can I see Jesus, can you take me to His house? ”  Oh man, I have some filling in to do!!!!  We talked about heaven. About the banquet table in heaven with Jesus, of no more crying, no more sick, no more owies.  Zinnia is just crazy, crazy for jesus.  Honestly, she LOVES HIM>  ” OH JESUS YOU ARE SO SO SO NICE< OH I LOVE YOU SO SO MUCH< YOU GIVE ME MOMMY< YOU GIVE ME BIG JONES FAMILY> YOU MAKE EVERYTHING!!! OH NO!!!!! mommmy!!!!!! in LONG GANG (orphanage) NO JESUS!!!!”  I told her we can pray,  we can pray for mommies and daddies to come to longgang and we can pray for people to come to long gang and tell them about jesus.  Then she melted out hearts and our eyes poured forth the overflow….

“I ZINNIA will go to longgang when i zinnia big. on airplane. i zinnia telll all longgang JESUS!!!!!!  I tell IE (nannies) Ok. jesus he love you, he made you.”

We talked on and on about prayer and how he hears and sees everything.  They are understanding english so well.

Later i told the boys…wow.  do you realize what is happening here right under our noses?

“Yup, it’s awesome”.

Yup it is.  Yes, HE IS.

He cares about healing our hearts.  That is His priority.  He is healing their hearts.  It’s a very beautiful thing.  We all will one day receive whole, new, perfect bodies in heaven.  However, here on earth He allows( very lovingly )suffering to remind us of our eternal home, to spur us on to yearn for it.  This is NOT our home.

WE could have missed this.

Elaine Grace Jones and Zinnia Joy Jones. Orphans NO MORE, forever my daughters.

It all seemed way way way too much before we adopted them.  Now it is my life.  I would die for these two girls.  He perfectly provides all I need, and more.  JOY.  His grace.

Loving Him, Laura

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5 Responses to “”

  1. Cindy McGinley July 1, 2011 at 6:36 pm #

    Dear Laura,
    Your blog has been such an inspiration to me. We adopted a 7 year old daughter from LongGong right before you did. Our daughter knows your girls and loves to see pictures of them. I so appreciate your heart and your relationship with the Lord. Thanks for taking the time to share. You are making a difference in a lot of lives in your home and in the blogworld.
    God bless you and your family,
    Cindy

  2. sasha July 1, 2011 at 9:09 pm #

    Hi Laura! thank you for your sweet comment on my blog. We prayed for you all last night at small group. your blog is such an encouragement to so many. Thank you for all you have shared. So thankful for you!!

  3. Lynne July 1, 2011 at 9:24 pm #

    Hi Laura – As always, your words are so beautiful, such a blessing to all of us. I cannot imagine all of the things you are experiencing………my heart is with you and your family. Lainnee and Zinnia are priceless treasures – they are right where God intended for them to be. I’m so thankful you are their Mommie, and they are in your wonderful family. They are soaking up the love of your family, and Jesus Christ, like two little sponges. They are just beautiful. Their smiles melt my heart. My prayers are with each one of you every day.

  4. Alexandra Howard July 5, 2011 at 9:50 pm #

    Thanks for the kind remarks about our new baby girl! Your girls are so precious and beautiful. Your family is in our prayers and I know that God will give you the strength and support you need!! You have such a sweet sis that has been such a blessing to me!

  5. jean Mulvahill July 6, 2011 at 10:40 pm #

    Beautiful post! You are such a great mom to your two blessings! In fact your whole family is awesome!!
    Love your faith and your trust in HIM!

    I think about our Mia as I read your blog- she has blood transfusions every 4 weeks. I am learning through you and so thankful for your honesty! It is so much bigger than us- we need to just trust HIM and keep moving forward!

    Those two sweeties are so cute! Love their dresses and matching bags! ;-)

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