"Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight."
Proverbs 3:5-6
Tomorrow is another big day in Kirsten's medical world; she begins a new heart medication. This will be medicine #10 in her daily routine not including the supplements from the natural doctor.
The new medicine, Carvedilol, is commonly used in adults but is fairly new in treating children. The goal is to decrease the swelling in Kirsten's left ventricle. 1 side effect is low blood pressure. The first dose will be taken at the cardiology office. She will be given a low dose and then her blood pressure will be monitored every 30 minutes for 2 hours. We return 2 weeks later to increase the dose and monitor her blood pressure for 2 hours. Repeat 2 weeks later. Repeat. Repeat until she's taking the highest dose her body can handle. Another side effect is increased respiratory distress in asthmatic patients. And Kirsten has asthma and poor functioning lungs. So we will see the pulminologist 1 week after each increased dose of Carvedilol.
So here I am again.... scared, nervous, trying desparately to trust the Lord's sovereignty, trusting some moments and not trusting other moments, knowing in my heart that he is in control and loves Kirsten more than we possibly could but my head questions why he doesn't just heal her. He could. I know that. I never doubt that. But he chooses not to and I don't know why. I could go back to asking "why?" but I know that solves nothing. My part in this is to trust my heavenly Father and pray and love my daughter.
Earlier in the week, I ran across something I wrote on her Caringbridge site. It was Kirsten's 7th birthday... now 4 years ago. It reminded me of what Jesus Christ has done in our lives since Kirsten's birth. It reminded me that I can trust him because he's proved himself over and over. I have no idea what my future holds. If his will is to take Kirsten before I die, I know that he will be right by my side. He promises to never leave us or forsake us (Deuteronomy 31:6). And he promises that his grace is sufficient for us (2 Corinthians 12:9).
Here's what I wrote:
October 18, 2007
As I lay in bed last night, I wondered what to write on Kirsten's journal today. This is truly a special day. 7 years ago, I was still in labor and the future was filled with many unknowns... What would our precious baby look like? Would she appear to be healthy or sickly? How big would she be? Big enough for surgery? Will she breathe on her own? Would our baby live? How would we handle it if she died? Would we honor God? Would he be proud of us? Would he be glad he chose this journey for our family?
This week at Bible Study I studied the sovereignty and providence of God. As we look back, we can see the sovereignty and providence of God in Kirsten's life and in the life of our family. His sovereignty refers to his absolute right to do all things according to his good pleasure and purpose. His providence is his "unseen" work on behalf of people/an individual.
Brad and I have been convinced from Kirsten's first diagnosis with her heart condition in September 2000, that God did not make a mistake. Kirsten's heart problem did not slip by him unnoticed...No! In fact, he purposefully created her that way. Psalm 139:14 says, "I praise you for I am fearfully and WONDERFULLY made. Your works are WONDERFUL, I know that full well." By man's standard, she is not wonderfully made; in fact she has lots of problems by man's standard. But by God's standard, she is perfect the way he created her.
One week after Kirsten's birth, she was diagnosed with DiGeorge Syndrome, a condition that presents a seemingly endless list of symptoms. Once again, Brad and I had the opportunity to decide if we believed in God's sovereignty. Acts 17:24-25 says, "The God who made the world and everything in it is the Lord of heaven and earth .... He himself gives all men life and breath and everything else." We were still convinced that the God who created the universe created our daughter with a chromosome deletion - on purpose. It was not a fluke thing - something random that just happened. It was his divine purpose for her life and ours. But we kept asking "Why?"
And how have we seen God's providence over the last 7 years? Sometimes God's providence is not evident. Many times it's unknown, but throughout Scripture is woven God's mighty and loving acts on behalf of his children. So we know that he intervenes for us too!
When Kirsten was diagnosed in utero with her heart condition, I was anointed with oil and prayed over twice. James 5:14-15 says, "Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up." We won't know until we get to heaven if the Lord answered "No" or if he partially healed her. Perhaps Kirsten's heart and symptoms of DiGeorge were much worse than they were at birth or are today. Perhaps he improved her condition on behalf of the many who prayed for her. We've known and heard of DiGeorge kids who are significantly worse off. But perhaps he simply said, "No."
For months, we asked the Lord "WHY?" Why did you let this happen to our daughter? Why our family? What good can come out of this? How can you let this precious baby suffer? How can you let us as parents watch our baby suffer when we can do nothing but pray? I admire Paul for asking the Lord only 3 times to remove his thorn! I'm sure I asked thousands ....maybe millions of times! And one day, on June 8, 2002 (Kirsten was almost 20 months old), I felt the Lord's nudge (Actually it was more like a kick!) to stop asking him to heal her of DiGeorge and to stop asking "why". Now please understand that he did not tell me to stop asking him to heal her heart, developmental delays, other illnesses, etc. It was only to heal her of her genetic disorder.
He directed me to 2 Corinthians 12:7-9. Verses 8-10 say, 'Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties, [in DiGeorge Syndrome]. For when I am weak, then I am strong.'
The answer to "why" is: TO SHOW GOD'S POWER. It's a difficult lesson to learn that God's glory is much more important than our comfort and happiness and ease in life. We have our weaknesses - whether they be a physical ailment or disability, or whatever - to bring glory to God. My teaching leader at Bible Study said something beautiful! "Don't waste your suffering!" Let the Lord be glorified so that your suffering is not in vain. Don't become bitter and angry and continue to question God. The "why's" don't matter. Proverbs 20:24 even says that: "A man's steps are directed by the LORD. How then can anyone understand his own way?"
Romans 11:33-36 begs the question, "Who do you think you are questioning God?"
"O, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! Who has known the mind of the Lord? Or who has been his counselor? Who has ever given to God, that God should repay him? For from him and through him and to him are all things. To him be the glory forever! Amen."
Through my daughter's 7 years of life, I have learned that God's purpose will prevail ("Many are the plans in a man's heart, but it is the LORD's purpose that prevails." Proverbs 19:21). I can either go along with it or stand in the way. And do I really want to stand in the way of God?
Our prayer for you, our precious Kirsten, is that this will be the best day of your life so far! We are so proud of you. We are thrilled to be your parents. What a huge blessing you are to us.
Happy Birthday, Kirsten!
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