We have enjoyed several weeks of peace. After a very trying first two trimesters, it has felt so good to not have a lot to worry about, knowing that our Phoebe is on the mend and that her prognosis looks good.
During these weeks of quiet I have had the joy of relishing her every move; her rolls and kicks and hiccups… all of which remind me just how far she’s come and what a miracle she is. The prognosis of Turner Syndrome is in and of itself very trying, but things with Miss P have just kept improving, letting us just step back and let God do His thing with her, all the while reminding us that He does indeed know the desires of our hearts and that He hears our prayers. I am so thankful for that.
It is so normal for us when He says, “Yes” to rejoice with gladness. We want to scream from the mountaintops that “GOD HEARD OUR PRAYERS! HE IS SO GOOD!”
And then sometimes we forget that even though He said, “Yes,” to some things, our journey and our trials are not over. Far from it. But do we scream “GOD IS SO GOOD!” then?
“In this world you will have trouble…”John 16:33 quotes Jesus as saying.
Today we were given frustrating and disappointing news about our Phoebe. As is “normal” for many Turner’s girls, her heart is broken. It will need major repair soon after she is born.
Our dreams of a typical delivery, enjoying kisses and snuggles and feeds with our precious girl after she’s born have been replaced with the reality that it is highly probable (barring a miracle) that she will need to be whisked away to Children’s Hospital within a few hours to begin the long and involved prep for surgery… while I recover across the pond and join her the next day if all goes well.
While we expected some minor heart surgery to be needed, to know that her heart’s health has been downgraded is, for lack of a better word, disheartening.
Staring her future in the face I am (we are) faced with a few response options: 1) Grieve and cry and get mad at God… “Why would You give her healing and then take it away?” 2) Grieve and cry and panic… “What if she doesn’t make it?!” 3) Grieve and cry and trust God who, “created Phoebe’s inmost being; You knit Phoebe together in my womb. I will give thanks to You, for she is fearfully and wonderfully made; WONDERFUL are Your works, and my soul knows it very well….” Psalm 139:13-14 (name changes mine, obviously).
It is okay to grieve when things don’t go as expected. It is absolutely okay to be disappointed. But from the beginning of this wild journey we have made the decision to entrust our girl’s life to her Maker, who loves her more deeply than we can fathom. His plan for her is better than ours and her journey, while definitely not ideal according to the standards of the medical or non-medical communities, is the journey God chose HER for. Note that I didn’t say “for her”. I believe that it takes a special person to take on special, unusual journeys. She has been called for this job and she will do it well, whatever it looks like and for however long it lasts.
John 16:33 says, in completion, “I have told you these things, so that IN ME you will have peace. In this world you WILL have trouble. BUT TAKE HEART! I have overcome this world.”
Oh man, I cannot tell you how much I need to hear that. Trouble will come. Pain will come. Hurt will come. Disappointment will come. Frustration will come. If it is hard, it WILL come. It’s a guarantee.
But Jesus? He has overcome this wretched, broken place called “the world” and all the trouble that comes with it. He conquered the very death that encroaches on our daughter through her broken heart by His death and resurrection.
Because of that we can trust that when He says we will have peace? HE MEANS IT. It seems unfathomable, I know, but I can tell you that even with this really lame diagnosis for our daughter and the jagged mess of a number that it is doing to our hearts, we know down to the core of our beings that He will never leave or forsake us, making us bear this burden on our own.
“Have I not commanded you? Be strong and courageous! Do not be afraid; do not be discouraged. For the Lord your God will be with you wherever you go!” –Joshua 1:9
“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
“Be anxious for nothing, but in everything by prayer and petition and with thanksgiving, submit your requests to the Lord. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” –Philippians 4:6-7
I cannot, we cannot, create our own peace. We cannot look to anything of this world, be it a book or technique or object or activity, and find something that will actually bring penetrating, lasting comfort to our hearts when we are faced with stuff like this. The prospect of such an intense beginning and lifelong journey for our little girl? Trusting in any of those things will not fix her. None of those things will make us forget what’s going on. But living with the head and heart knowledge that she is fully known by God, fully loved by God and that He is working her life for her good (and ours) and His glory… that brings great, sustaining comfort.
So we’re choosing option #3. In our sadness we are trusting in God’s goodness. In our disappointment we are trusting in His ability to take what is broken on earth and work it out “for the good of those who love Him and are called according to His purposes.” (Romans 8:28) For she has been fearfully and wonderfully made by Him who loves her (and us) very well.
God is good every time.
If you are willing, please join us in praying that God would completely heal Phoebe’s heart. We trust that, whatever His will, it is good from His perspective and we trust Him, for He has proven Himself time and time again.