Heading for the Holidays….
Last Friday evening, right before walking out the door for the Auburn Theater (to have fun with old friends on stage) I received an email from Alexis’s oncologist letting us know that her NB (neuroblastoma) Cancer counts were well withing “normal” range. That is great news!
Last Night, Wednesday evening, before walking out the door for Austin’s school Christmas program, we received a call from her skeletal, endocrinologist, to let us know that our program of 1000 extra units of Vit. D, is working. Her para thyroid has come down (what we hoped and prayed for) and her Vitamin D counts have come up (also an answer to prayer)!
Her hearing aids are working great and after Austin’s school and Christmas party today, we headed straight for Childrens to meet with the hearing doctor. She was re-evaluated with the aids on, and is now hearing all the sounds she had lost without them. WE are so grateful! She loves them, and we even splurged and got her 2 new chords to wear, (a girl has gotta have a little color coordination with her hearing aids!) 
Well over the last couple of months, people have asked me if she’s always been deaf? If she’s always had hearing loss? How did we know? Little kids: “What is THAT in her ears???” These are common questions and i’m glad people ask instead of just stare. Hearing aids are no big deal, I can’t tell you how many I notice now, that we live with them. I always feel a little bad answering the truth…
She was born with PERFECT hearing, and had 2 tests to prove so. 24 cycles of chemotherapy (one in particular) robbed her of her hearing. We knew that was a side effect, and for the rest of her precious life she will need aids. Is this a big deal in the big picture? ABSOLUTELY NOT!
At Austin’s dental last week, we found out that her teeth are growing too large and that 4 of her baby teeth (2 on each sides of her upper centers) need to be removed. Oouch! And AAGGH!
A speech therapist called me to talk about Austin today from a testing we had done at school. I don’t know what those results are yet, she left a message.
So, is it okay to say: I’M TIRED OF DOCTOR’S OFFICES (got their 2nd dose of H1N1 yesterday (between school and school program)- Alexis asked for a shot instead of the nasal, and said she would “prefer a blood draw if possible” How many 3 year olds ASK FOR A SHOT & BLOOD DRAW?????) Not normal!
I’m tired of medical stuff, I am complaining! I need a little extra prayer right now!
So, even with nursing full time for the first year, making only organic home-made baby food, reading 3 books a night to the kids, teaching them to pray, reading countless numbers of parenting books, and helping my 6 year old reach her goal of learning to read before Kindergarten, brushing 2 x a day, daily vitamins, good sleep, lots of cuddles, lots of love…..this mommy still CAN NOT put bandaids on my children’s boo-boos. How I long to make it all Okay for them!
I had a “little mommy cry fest” and Austin said “Mommy I prefer you to yell and be mad, than cry, what are you crying about?” I said “I jsut want Life to be easy on you and Alexis and sometimes Mommy can’t make it all better” She said “But mommy Alexis LOVES going to the hopsital, she thinks it’s fun & I’m Okay, you do make it better!”
My Children know how to give me such a large band-aid for my heart and soul! I am so fortunate!
There’s the crazy update…..
ps- if it’s not done for Christmas now, who cares!????? Enjoy your family and being home and together, like i am trying to do. I am amazed at how rude “the world” is right now. Everyone is stressed, angry, rushed and have completely forgotten what this season is all about (myself included) God bless each of you and thank you for the miracle of Jesus!
-One tired, grateful mommy
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I am glad that you’re honest; it’s healthy. It MUST be tiring and stressful to have a medical routine like the one you juggle. And I still hear joy and gratitude in your words. Love the stories of your sweet girls’ activities and what they say. God bless all of you! XO
Jill your are great as a mother and friend to so many. Glad you are putting aside some of the non essentials and working to remember Jesus the most important part of Christmas.
Will continue to pray for you and hope you have fun with your family this Holiday season.
We love you. Vera and Frank Blake
We are so proud of you. You are much stronger than you feel.
We pray that you will enjoy this holidy season with your family. You have been so blessed. You Lord has been watching out for Alexis and your family. He must have many guardian angels assigned to you. But He knows you are worth it.
You are a wonderful example of a loving wife and mother. How blessed your family is to have you.
all our love and pryaers
John, Marlene and Michelle
Jill,I am on my way out the door to the Hostmark Hymn Sing. I am printing out yourpage to share and you can count on the continued prayers for you and your family and especially Alexis. They have claimed healing for Alexis. Some of these are 90+ year olds and no that pray without ceasing kind of prayer.
You are a wonderful Mother,Jill, and you have no idea what a blessing that is for me personally. The Lord will reward you well for your faithfulness in all these tough things you have had to face. Most of the photos of Austin and Alexis show the happy and much loved children that they are. Even the ones from the hospital are precious. Austin feeding Alexis a popsicle! Alexis surrounded by stuffed animal friends grinning ear to ear. Only a few show a very ill little one. (WHO IS NOW HEALED! THANK YOU,JESUS!)
Please post a video fo the girls singing a Christmas song. I just love to hear them sing.
Have a joyous Christmas and enjoy your blessings,for they are bountiful as you well know.
Much love and prayers in Poulsbo,Kathi
Of course you need a band-aid on your heart once in a while. With a heart the size of yours, it’s bound to need a little healing from time to time with all that you have to deal with! You are doing such a wonderful job with your whole family! Don’t forget to do some of that for yourself too. Take a deep breath, close your eyes and see the visions of that amazing family you have nurtured and cared for. All that you do shows in them! May God send extra comfort to you while you regain your strength in coping. Trust in him to lift you back up. You my friend, are so very strong and it’s ok to cry, take time to rest and “need” from others. God put you in our lives for a reason… just as he has put us in yours. Always let us know what you need. We are here for you!
Love,
Joy
Jill, Wow I love your e-mails/posts. OK this one made me laugh out loud here at my desk reading that Alexis requested a shot and a blood draw and then, the very next part made me cry. Hearing that you cried and then reading about how truly amazing your girls are at comforting you.
It is so great that you can cry in front of them and that they truly are there for you just as you are there for them. You have taught your girls one of the most important things in life…..to be caring and compasionate of others. Thank you God for the great test results! Praying for you always. Love Jodale MERRY CHRISTmas!!
Oh and the photo is gorgeous of all three of you. You look fantastic. I love your hair now.
Hi Jill,
Don’t be so hard on yourself. You are a great mommy to those girls. They are very lucky to have you and JB as parents. I will pray for peace for you. Ill continue to pray for the girls too. I hope you had a wonderful birthday and Christmas. Im praying for a blessed 2010 for you and your entire family. Hang in there.