SURGERY #2 UPDATE - BEA

We wake to an alarm for her earliest morning medication. The hours, after all, have to be set just right when we're controlling blood pressure. And just before bed, and at intervals throughout the day, the sounding alarm reminds us to care for her medical needs.

We're getting used to it now. And we're a team. And although some of them taste yucky, she whimpers less, accepting more.

 

This is our new normal for Bea.

 

Her follow up visit clarified via ultrasound that her surgery

(Bidirectional Bilateral Glenn, PA band) was successful. Thank you, Lord!

 

(Elka got to be Bea's doctor visit buddy this time around.)

 

Bea will have another investigative surgery in 6 months and then her Fontan procedure in the following year. This typical sequence is complicated by the fact that Bea's organs don't sit arranged like most of ours. Not only is her heart on the right side of her body, missing the left and stronger ventricle (among other matters), and inverse, but the rest of her anatomy is uniquely complex as well. This is not uncommon in Bea's type of situation, but the placement of her liver presents a complication for her otherwise standard Fontan.

 

God knows all of that, though. After all, He created her.

 

"For you formed my inward parts; you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made."

Psalm 139:13-14

 

Yes, God, the Creator of the heavens and the earth created Bea fearfully and wonderfully and He doesn't make mistakes.

Sure, sin entered the world and causes us disturbance while we're here, but God works all things for good.

 

"You intended to harm me, but God intended it for good

to accomplish what is now being done, the saving of many lives."

Genesis 50:20

 

And Bea prefers to focus on the good.

She talks constantly about heaven and she knows there won't be any "owie hearts" there.

"'He will wipe away every tear from their eyes,

and death shall be no more, neither shall there be mourning,

nor crying, nor pain anymore, for the former things have passed away.'

And he who was seated on the throne said,

'Behold, I am making all things new.'"

Revelation 21:4-5

 

This is Good News!

 

(Bea on her way to her follow up appointment...no fear amazingly...just JOY!)

 

To observe Bea, you wouldn't know she came home from ICU one week ago today. Unless her physical scars or dressings are exposed, it is otherwise indiscernible that this vibrant child was lifeless just last week. She is incredible! Her spirit leaps with glee and her vitality is remarkable! Bea has quite the gusto and we have to intentionally keep her down and cautious as her flesh isn't quite up to par with her zest just yet. But it will be. 5 more weeks we remain careful, and following that we will deal with some of the disappointments that have set in this week, knowing and respecting her physical limitations. But God doesn't see Bea's flesh as an imposition to His plans.

In fact, all the more will He utilize her for His will, her scars (both physical and experiential) to accomplish His purpose through Bea's

life and story. We'll do everything we can to facilitate this because we believe it's what we've been called to do with our daughter.

 

"For my thoughts are not your thoughts,
    neither are your ways my ways, declares the Lord.

For as the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.

 

For as the rain and the snow come down from heaven
    and do not return there but water the earth,
making it bring forth and sprout,
    giving seed to the sower and bread to the eater,
so shall my word be that goes out from my mouth;
    it shall not return to me empty,
but it shall accomplish that which I purpose,
    and shall succeed in the thing for which I sent it.

 

For you shall go out in joy
    and be led forth in peace;
the mountains and the hills before you
    shall break forth into singing,
    and all the trees of the field shall clap their hands."

Isaiah 55:8-12

 

So, as we continue to acclimate to some of our new post-surgery realities, approaching them as a family, we look to the Lord to lead us faithfully, knowing that He will. We accept, and will continually encourage Bea to accept the circumstances God has chosen for her, for us, seeing them ALL as good, wise, loving, and purposeful. We will sit in doctor's offices and endure painful separations in the future for the sake of participating in God's plans for both Bea and Beck. And we will praise the Creator for His beautiful creation in Bea's heart...

 

...and He's working on her heart. Bea loves Jesus and she knows that He loves her! She knows He's prepared a place for her where there will be no more pain, no more sorrow, no more tears, separations, or physical limitations such as she endures now.

 

I look at my joyful daughter and I marvel at her faith and passion to know Christ already. She says she wants to go to heaven.

(I'm hoping we can hold off on that a bit.) But, I'm also accepting of the fact that should Bea meet our Lord before I do, she would be the one rejoicing in a whole new way! Until then, He has plans for her here and it's a beautiful thing to get to take part!

 

 

"'Let not your hearts be troubled. Believe in God; believe also in me. In my Father's house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also. And you know the way to where I am going.'

 

Thomas said to him, 'Lord, we do not know where you are going. How can we know the way?' Jesus said to him, 'I am the way, and the truth, and the life. No one comes to the Father except through me. If you had known me, you would have known my Father also. From now on you do know him and have seen him.'"

John 14:1-7