the Bell & the Hammer
Some wonderful friends of ours, Dan and Serenity Johnson, recently put out a new album and on it, they recorded a beautiful song for Maximillian.

I know I have been telling quite a few of you about it already, but just in case …you can read the lyrics and listen to it here or in the player below.

It is about the nights Max and I spent together, reading “The Lion, the Witch & the Wardrobe”, from C.S. Lewis’ “Chronicles of Narnia” …

 

“Wrong will be right, when Aslan comes in sight,
At the sound of his roar, sorrows will be no more,
When he bares his teeth, winter meets its death,
And when he shakes his mane, we shall have spring again.” (The Lion The Witch The Wardrobe)

“I have come home at last! This is my real country! I belong here. This is the land I have been looking for all my life, though I never knew it till now…Come further up, come further in!” (The Last Battle)

“Where, O death, is your victory?
Where, O death, is your sting?”
The sting of death is sin, and the power of sin is the law.
But thanks be to God! He gives us the victory through our Lord Jesus Christ.
– 1 Corinthians 15:55-57

<a href="http://thebellandthehammer.bandcamp.com/track/reading-you-to-sleep">Reading You To Sleep by The Bell and the Hammer</a>

Morning

In: Thoughts

12 Aug 2009

Just something I read this morning, that I thought I should share:

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” – Philippians 4:6-7 NLT

“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7 NASB

Walker-Warburg

In: Big Updates

20 Jul 2009
Max's Book

Max's Book

In talking with some friends this past weekend, I realized I had been reluctant to update all of you on Max’s final “clinical diagnosis” from our last meeting with the genetic counselor … I am sure my reluctance is due in part to the gravity and future-impacting nature of the results. I have attached Dr. Wheeler’s full report as a PDF, though I will say that as complete as it is, it no where describes the person I know as my son. 🙂

Some of the main points that are within the report …

  • Max was diagnosed with Walker-Warburg syndrome.
  • It is autosomal recessive, meaning that an unaffected parent “carrier” can pass it along to their children.
  • It would seem that Jodie and I are BOTH carriers … meaning that there is 25% (1 in 4) chance that this could affect future children.
  • A 14-16 weeks ultrasound would be earliest when we would be able to tell if a future child was affected.

To be brief, we still don’t yet know what this means for us as a family. Obviously the doctor recommended the usual options (artificial insemination, in vitro fertilization, adoption, etc.) … but we haven’t made any decisions yet.

Maximillian Medical Report (PDF)

“Moses answered the people, ‘Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Egyptians you see today you will never see again.'” – Exodus 14:13

“And Mary said: ‘My soul exalts the Lord, and my spirit has rejoiced in God my Savior.'” – Luke 1:46-47

“No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” – Romans 8:37-39

Sustain …

In: Thoughts

3 Jun 2009

I haven’t posted an update recently because I am still lacking the words necessary to show the appreciation and love that my wife, myself and our families have for all of you, your support and your prayers. There has not been a day yet where God hasn’t put someone’s email, text, phone call, letter, card, etc. before us as encouragement, as well as emotional and spiritual sustenance. And though we have yet to receive all of Jodie and Max’s medical bills, we are already seeing God provide gifts from our friends and family (and complete strangers that only know Max through this website!) that will help us in that area.

We enjoyed the company of so many at Max’s celebration and memorial … and in a rarity that hasn’t happened in years because of schedules and addresses, we had the entire immediate Cortez family all together in one place.

Cortez Family at Max's Celebration

Cortez Family at Max's Celebration

There is more I want to share, but for now … know that Jodie and I love you … and that it is God that sustains …

“Listen to me, O house of Jacob, all you who remain of the house of Israel, you whom I have upheld since you were conceived, and have carried since your birth. Even to your old age and gray hairs … I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. To whom will you compare me or count me equal? To whom will you liken me that we may be compared? – Isaiah 46:3-5

More Max Photos

In: Just Photos

3 Jun 2009

The great people that volunteer their services as part of the Now I Lay Me Down To Sleep project were able to take some great photos of Max that I thought you all would enjoy.

Celebrating Max

In: Big Updates

18 May 2009

Jodie and I would like to invite you and your families to join us in celebrating the life and joy of our beautiful son, Maximillian.

On Thursday, May 21st, between 7 PM and 9 PM, join us in commemorating baby Max in the Student Union Building at Florida Christian College in Kissimmee, FL. Southside Christian Church will be providing refreshments at this informal gathering of family and friends. In the words of Aunt Stephie … “Come and relax, as we celebrate Max!”

On Friday, May 22nd, at 12 Noon there will be a Memorial Service at Poinciana Christian Church in Kissimmee, FL. All are welcome to attend.

We ask that in lieu flowers that donations be made towards Max’s medical expenses. If you would prefer, you can donate online via PayPal.

Oscar & Jodie Cortez
2324 Academy Circle West #304
Kissimmee, FL 34744

We thank you for your continued prayers, love and support … and cannot wait to see you.

“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

Love,

The Cortez Family

——————

Directions:
Florida Christian College‎
1011 Bill Beck Blvd.
Kissimmee, FL 34744
(407) 847-8966

Poinciana Christian Church‎
3181 Pleasant Hill Rd, Kissimmee, FL‎
(407) 870-9700‎

Photos of Max

In: Just Photos

18 May 2009

For the benefit of all our family and friends (that’s you) that have been with us daily in praying and watching and loving Max, I am posting up two much much larger collection of photos than those here. Please feel free to enjoy, download and share them with whomever you would like!

Baby Cortez Photos – Day 0 through 11

Baby Cortez Photos – Day 12 through 16

“He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, ‘He is my refuge and my fortress, my God, in whom I trust.'” – Psalms 91

“From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked.” – Luke 12:48

3:34 PM

In: Big Updates

16 May 2009

With Maximillian in his arms to the very last second, right around 3:30pm, Daddy and Mommy finally handed over their son to God and welcomed him home.

“Better is one day in your courts, than a thousand elsewhere … For the LORD God is a sun and shield; the LORD bestows favor and honor; no good thing does he withhold from those whose walk is blameless. O LORD Almighty, blessed is the man who trusts in you.” – Psalms 84

8:40 AM

In: Quick SMS Notes

16 May 2009

“Max’s RN for the morning, Alison, just finished changing out some of his tubes and administering another dose of phenylbarbital. He is looking even puffier today … due to his not urinating and the continuing need to give him fluids to keep his blood sugar up.”

“Daddy is with him right now and Jodie should be joining them in a few minutes.”

“From the rising of the sun, to the place where it sets, the name of the Lord is to be praised.” – Psalms 113:3

10:55 PM

In: Quick SMS Notes

15 May 2009

“Jodie and I are staying at the hospital tonight, in a ‘nesting room’ only a few feet from Max’s room. We will probably be up a good portion of the night with him and we will be here all day tomorrow … feel free to stop by and visit … we would love to see you! His RN tonight is Carla, who is doing a great job making the little guy comfortable.”

Our Family

Our Family

“But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” – 2 Corinthians 4:7-9

About Max

Maximillian Alejandro Cortez arrived at 7:48 am on Thursday April 30, 2009, weighing 4 pounds 12 ounces.

He spent 14 days in the NICU at Florida Hospital South, with his mother, father & family, before heading home to Heaven. We are all very excited to see him again.

Contact Info

If you need to, you can contact Max's Dad:
Cell Phone: (407) 873-8709
Email: ocortez@mac.com

  • Oscar: Becky, Our son, Maximillian, was only with his mother and I for 14 days, but I am sure he is doin [...]
  • BECKY NOBLE: Hi, my 19 year old daughter has just been told the baby she is carrying has walker - warburg. She i [...]
  • Oscar: Donna, Thank you so much for your thoughtfulness ... we are both doing well. We have been keeping [...]
  • Donna Remson: Just checking in to see how you all are doing. I have this site linked on my facebook page - it hel [...]
  • Alma Cortez: Thanks for the wonderful reminder mi hijo. I miss my baby Max and I love you and Jodie. [...]