The Amazing Story of Anastasha – Part 2

Last week, I began to share with you the story of a wonderful, yet unborn, little girl named Anastasha. You can read the first part of her story here. Now, for so many of you who are praying for her and her parents, here’s the next chapter … with many others yet to be written.

Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness. Lamentations 3:21-23

Loved ones,

It has been one month exactly since we found out that Anastasha has anencephaly. This has been a hard month, probably only second in difficulty to the month that Ariana was diagnosed with leukemia back in 2001. We’ve walked through the initial shock and terror where things felt more like a dream than reality. Now we’re moving into a place of acceptance and greater peace, despite the continued pain.

We are exactly halfway to Tonya’s due date (20 weeks). Anastasha is about 6 inches long and weighs 6 ounces. She is already developing fingerprints and toeprints. She can blink and has a complete circulatory system. With the exception of her brain, all of her parts are fully formed and appear perfect.

Even though we are halfway through the pregnancy, there is no guarantee on how long we will have Anastasha. She could die in the womb at any time. She could be born very preterm. She could survive until term but die during the delivery. Or she could survive the birth process and live for some (way too short) period of time.

We don’t know.

We so deeply desire that Tonya will carry her until term and that we will get to hold her alive in our arms. But that is not promised to us. We just have today.

And we do trust that her loving Father, Who created her, knows when her last heartbeat will be, whether in the womb or in our arms.

And we know that He is good and will give us grace to endure the pain of her loss whenever and however it comes.

For now though, we are rejoicing in Anastasha’s life. It is of great worth, to us and to God.

We’ve seen her several times on ultrasound. She is active and beautiful. We got a great picture of her hand with her index finger pointing the last time we did an ultrasound. We think she was reminding us to “look up”, which we’ve been doing a lot these days.

Father’s Day last weekend was bittersweet.

I always love that special day with the children, and this year was no exception. I got my 2010 addition of the “handprint shirt,” which I always look forward to. But it was difficult knowing that this was the only Father’s Day that Anastasha would be here with us.

I spent extra time in bed that night snuggling up with Tonya’s belly, talking to my daughter and telling her how much I love her and how thankful I am for her life.

We are beginning to plan Anastasha’s funeral. It has been surreal at times and at other times nauseatingly painful. We are going to do many things non-traditionally and will try to include the kids in many aspects. As of now, Ariana (10) is probably making the burial gown, and Charis (9) and a good friend will be making the casket.

That may sound a bit morbid, but we think it is good for them to give of themselves to their sister, and we hope it will aid in their own grieving.

The kids are doing well, we think. We talk about Anastasha constantly. It’s hard not to since Tonya and my thoughts are consumed by her. The kids bless their sister and sing “Jesus Loves Me” to Tonya’s belly before bed each night.

We’ve had some heart-to-heart talks with the older kids, and they’ve shared their hurt, disappointment, fear and frustration.

Many of you have been praying for Anastasha’s healing. We welcome this. We’ve prayed for this and so have the kids.

We know the Lord can do ANYTHING, including grow a brain for our daughter. But we don’t expect that He will.

The Lord chooses when and how to perform miracles. But they seem to be the great exception, not the rule. We just make our requests known and let Him decide how to answer.

Many of you may disagree with us theologically, and that’s okay.

We’re not just guarding our hearts against disappointment. No one would rejoice more than Tonya and I if the Lord chose to heal her.

But please know that our biggest desire is not for her earthly healing, but that the greatness of the Lord would be MAGNIFIED in Anastasha’s life – whether in life or in death. May His glory shine through her for the world to see, whether it be for 80 seconds or 80 years.

This is the prayer for all of our children, incidentally.

We want to thank so many of you who have supported us, mostly from a distance, with kind words of love and support.

And also thank you to those of you who have been near to us and have supported us tangibly or with an embrace or tears.  Romans 12:5 says “Rejoice with those who rejoice; mourn with those who mourn.”

We are doing both, and so have many of you.  Please know that this ministers to us deeply, probably more than anything else.

May the Father’s tender mercies, which are new every morning, be with each of you.

Craig and Tonya (and the rest of the DeLisi crew)

This week, I’ve been praying Psalm 34: 17-19 for my dear friend, Craig, who I consider an amazing and righteous man:

17 The righteous cry out, and the LORD hears them;
he delivers them from all their troubles.
18 The LORD is close to the brokenhearted
and saves those who are crushed in spirit.
19 A righteous man may have many troubles,
but the LORD delivers him from them all;

The righteous cry out, and the LORD hears them; he delivers them from all their troubles. The LORD is close to the brokenhearted and saves those who are crushed in spirit. A righteous man may have many troubles, but the LORD delivers him from them all.

I hope you’ll keep Craig, Tonya, and their kids in your prayers.

4 thoughts on “The Amazing Story of Anastasha – Part 2

  • Elizabeth Steiner Hayward

    Dear Craig, Tonya, your children, and all who have been moved and touched by this important and compelling story.

    I completely understand and support Craig and Tonya’s decision. And, I hesitate at some level to suggest this, but will take the liberty of offering the thought that the two families I know personally who have dealt with this in their own lives have taken great comfort from donating their child’s organs so that other children might live.

    My particular path to faith believes strongly in organ donation so I took this opportunity to share my thoughts. If this suggestion is in opposition to your specific religious perspective, please forgive me for any offense I have caused.

    May G-d in His great mercy continue to support all of you along this difficult path, and know that you are indeed demonstrating the greatest of faith and modeling grace with every step you take.

  • Kate Larimore

    Dear Craig & Tonya,

    I have been deeply touched by your story on Dad’s blog. I recently finished reading I Will Carry You by Angie Smith, the wife of Todd Smith, who is the lead singer of the group Selah. It chronicles the story of their daughter Audrey Caroline who also had a condition that made her only live 2 hours & 15 minutes after she was born. Angie also tells about her grief and that of her husband & girls, as well. I thought it might help you all. Angie’s also written a blog called Bring the Rain about their experience. I’m praying for all of you.

  • Elizabeth and Kate — thanks so much for your note to the DeLisis and your suggestions. I’m expecting to post an update from them on Monday.

  • Craig DeLisi

    Elizabeth,

    Thank you for your comments and suggestions. They are not in ANY way offensive. We are looking into the options for organ donation. We live in a rural area, 2-3 hours from any transplant center. Even thought I’m a physician, I really don’t know much about organ harvesting procedures (how long after birth, etc).

    Kate,

    I feel like I know you even though I have never met you. Your mom and dad have talked about you so much in our times together. I was in medical school in Birmingham around the time you were at Samford (or was it Birmingham Southern) – going on memory here.

    The answer is “Yes!”. I have read Angie’s book and blog and been ministered to by both (as well as the song written for Audrey). I have an amazing story that I will probably share about Angie in the coming weeks, actually.

    Thanks for caring and for praying for us.

    Craig

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