Hope for the Best, Prepare for the Worst

HOPE. It's a word I've seen over and over during this journey with Verity and her diagnosis. Edwards Syndrome, a condition I had never even heard of before autumn hit, has become an all-too-close reality over these past months. It has been exactly 5 months since I picked up the phone and stood in shock listening to a doctor tell me about Trisomy 18 while assuring me that my risk factor was "only 1 in 10" but that she recommended further diagnostic analysis.

In those 5 months, we have learned so very much. We have become connected with families whose lives revolve around this rare condition as they sacrificially love the precious little ones who have been entrusted to them. Five months: for some of these dear families, little ones have been born, lived, and died within that span of time. Some are even now fighting for their lives in hospitals. Some didn't make it to term but were born with dignity, cherished, photographed, and are still loved and missed.

When a new member joins the Rare Trisomy Parents Facebook page, the introductory message is often filled with fear--a family is awaiting testing results and has heard their child might have a rare trisomy condition, or they have just received a confirming diagnosis and are terrified of what the future will hold. It is a beautiful thing to watch comment after comment appear on the thread, with photos of beautiful children of various ages being posted along with words of encouragement and HOPE.

"There is always hope." 
"Never give up hope." 
"Hope for the best."

Hoping for the best undoubtedly looks different for each person, each family represented. Part of our own personal struggle during this journey is discerning what, exactly, ARE we hoping for?? In the beginning, it seemed enough to hope that Verity would be born alive and everyone in our family would get to meet and hold her. The more we learned and interacted with families who are raising living T18 children, the more we began to adjust our expectations: with no significant anomalies showing on ultrasounds, Verity certainly seems to have higher-than-usual chances of doing well after birth. And I've read and seen so much that has led me to prepare to be the mother to a special-needs child who will be with us "long-term." (Even T18 babies who do well only have approximately a 5-10% chance of reaching their first birthday; still, there are a number who are living well beyond the one-year mark.)

Our hopes, our expectations, swung from fairly dire on one side of the spectrum (we hope to meet Verity alive before we have to bury her) to the other extreme of the realm of possibility (we hope she will need minimal interventions and proves to be the exception to the Edwards Syndrome "rules").

The problem with emotions is that they don't stay in a box. Three weeks ago joy surged in my heart as I anticipated giving birth to Verity. Whatever happens, I know God is writing this story, and I desire to focus on HIM instead of ME. Our number one prayer from the beginning has been that God will fulfill HIS purposes for and through Verity. Thank the Lord for His steadfastness and for facts that don't change with our feelings...

A few nights ago when I was having regular (painful) contractions, I got up in the night to sip water and read over recent posts in the Trisomy parent group. The picture of a beautiful infant girl caught my eye, and I wept as I read her mama's announcement that this sweet baby was born February 16 at 42 weeks, weighing 6 pounds, 4 ounces, and lived exactly 48 hours before being taken to heaven.

It hit me like a tidal wave: Verity is already a full-term baby and looking to be a relatively healthy weight. I've been making assumptions I have no right to make. I sobbed. I begged God, Please...let my parents get here in time to hold Verity. The truth is, I really have NO IDEA what will happen once our daughter is born. I can't take anything for granted. God doesn't owe me a thing--rather the contrary! He gave His only Son, Jesus, as a sacrifice for my sin, the only sacrifice that would satisfy the requirements for atonement. Mercy triumphs over judgment because of God's incredible love for each person He has made...

...including medically fragile Verity...
...including her emotionally fragile mother.

I was a weepy mess that night. I went back to bed when the contractions subsided, hoping to get a bit of sleep, and I found myself in a dialogue with God. I'm not necessarily a "sign reader," seeing "omens" or whatnot in any and every circumstance, but it seemed that in the span of a few short days, gentle reminders were coming at me from all directions with a common theme of not taking anything for granted, that pain and loss and death are inevitable during our time on earth, that God's glory is displayed in our weakness, and that His purposes are loving, good, and eternal.

Whatever happens...whether it is the "best" or the "worst"...I believe God has been preparing us for it. I believe there is purpose in all of this and that Verity is (and will continue to be) bringing people into a closer relationship with Jesus. Her life AND her death will glorify her Creator.

We have almost come to the end of this pregnancy journey, and I'm reminded of the Scripture passage we included on our Verity photo cards that we have given out to so many people over the past few months:

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in HOPE of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces HOPE, and HOPE does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:1-5

This hope is not an "I hope something good will happen" kind of a hope! No, the hope Jesus gives is the assurance that what God has promised is indeed truth. We named Verity to remind us and to share with others the TRUTH.

Have you been justified by faith?
Do you have peace with God through Jesus Christ?
Have you received grace?
Do you rejoice in having assurance of an eternity in heaven?

If so, then you can rejoice in any suffering you may be experiencing--even if, like me, you are weeping from time to time because of it.

If not, then know that you are in my prayers. We often pray for loved ones who haven't yet accepted or acknowledged that Jesus Christ is THE way, the truth, and the life and that no one comes to God except through Him (John 14:6). Verity's diagnosis 5 months ago caused us to specifically be praying that God would draw people to Himself through our baby girl and the journey our family has been given with her. Please know that Ted or I would love to talk with you if you have any questions about any of this!

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love. 1 John 4:18