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 (attached below). 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)