New New Normal and Life Lessons
It looks like it is really happening. Everyone is planning on us going home tomorrow. This is no easy process. Daniel is a very medically fragile child, and he requires a TON of medicine and support. We have been here for 55 days, since October 25th. For seven and a half weeks, Daniel’s blood pressure, heart rate and rhythm, oxygen saturation, and respiration rate have been monitored 24/7. He has had almost daily labs measuring all kinds of blood chemistry– oxygen saturation, CO2, bicarb, potassium, sodium chloride, hematocrit, hemoglobin, and pH, to name a few. He has a g-tube and requires oxygen. He needs a ton of follow up appointments with cardiology in Temple, his primary care doctor, the nutritionist, physical and occupational and speech therapy. We somehow have to get this precious boy home– a 3 to 4 hour drive, depending on traffic–with his feeding pump, his portable oxygen tanks, and SEVENTEEN different meds.
Does this sound overwhelming or intimidating? The fact that I am not at all overwhelmed or intimidated right now just goes to show how my life has drastically changed in the last six months. You may be asking, “Are you scared that he won’t be monitored all the time now?” The simple answer to that is no. I know this boy so well by now. If he even hiccups weird, I go on high alert. I know whether he wants to snuggle, is withdrawing, has gas or a headache, has a wet or dirty diaper, or is hungry just based on his cry. I can tell if he based on his color if he is getting mottled because he is cold or if he is actually in respiratory distress. I have the cell phone numbers of Dr. Salazar his surgeon, Becky and Michelle the constantly on call CV surgery nurses at CMHH, and Dr. Pliska his cardiologist in Temple. If something bad happens and we are able to get him emergency care, he will have everything he needs close by.
Could something crazy happen that would mean he would die because he is not in the hospital? Of course. He could have a stroke. He could have a heart attack. He could have a brain bleed that we don’t know about. His lung could collapse. There are ONE MILLION things that “could” happen, and there is absolutely nothing we could do about it. But that is true for everybody alive on earth right now. He has a whole team of people working to make sure he has a life. He has fought hard to live. I refuse to live life in a bubble, and I intend to help him live to the fullest. The best life Daniel can live right now is at HOME, and I will fight for it.
One big thing I have been pondering recently is just how drastically our lives have changed and how we have grown individually and as a family. I think we are all stronger because of this. I have agonized over the effect this has had on David and Hannah, and I have grappled with tremendous “mommy guilt.” Recently I have come to view it in a different light, though. David and Hannah know what real hardship looks like. David has been asking questions about dying, and it has been a real struggle for him to see his baby brother in danger. He totally “gets” it, and he is just a baby too. My kids have had to deal with more challenges to their faith before the age of five than I had by age 31. I am reading through James right now in my chronological bible. James 1: 2-4 (NLT) says, “when trouble comes your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.” Our lives are transformed for the better. We have been renewed, strengthened, transformed. And we get this precious, sweet, amazing little boy. What an incredible gift! Thank you, God!
I have had the wonderful opportunity to talk with my children about what it means to have faith no matter what. David recently asked, “Mommy, if God is good, why do people get sick and die?” David asked that question at the age of barely 4. He followed up with, “If hospitals are supposed to help people, why do some people get sick and die there, like Uncle Gary?” Apparently he had seen a picture of my uncle Gary and asked Pam who he was, and she told him. He, of course, connected the fact that he was her “baby brother” with his baby brother, and all of a sudden had to deal with the idea of death. I told him, “Remember the story of Joseph. Remember how he was sold into slavery by his brothers, and he went to prison. That looked like a bad thing, right? But God used Joseph to save his brothers and all of Egypt from famine. What about Jesus? He died on the cross, and that seemed really bad, right? But God used him to save us all from our sins. Sometimes things look and seem really bad, and we don’t understand the big picture, but God does. He always works for the good, even when we don’t understand.” How incredible that David and Hannah are facing these tough questions so early, and how wonderful it is that they have been able to see first hand how God always provides, how God is always good.
In 1 Peter 1:5-9 (ESV), it says, “In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.” I wish I could take Daniel’s pain away and make his life easier. Honestly, though, I am in awe. People say, “God must sure have a plan for Daniel. He is going to do great things.” To them I say, “God already has!”
Another blessing is how eye-opening it has been to see how God provides in every possible way. I have an incredible support system at home with David and Hannah. Brian and I couldn’t do this without the help of my mom and dad, pam and Elmer, our community, and our friends. We are a little village coming together to raise our children. I know this will be incredibly difficult. Somehow I have to care for Daniel and raise a 2-year-old and 4-year-old and be a wife to Brian. Thank God I don’t have to do it alone. Whether it be through providing meals, prayerful support, friendship, help with kids– all of our needs have been consistently met.
As I have mentioned in previous blog posts, I have been reading through the New Testament in my chronological bible. I finished the Gospels, and it was eye-opening. I got an incredible, complete picture of Jesus, our savior. He is a humble servant, love and truth and grace incarnate. I am now reading the epistle of his brother James, and he stresses the fact that the Holy Spirit is transformative. James writes that it isn’t enough to believe in God. He writes, “Good for you! Even the demons believe this, and they tremble in terror. How foolish! Can’t you see that faith without good deeds is useless?” (James 2:19-20, NLT). He doesn’t mean that we should pursue righteous works as a means to salvation. We can never be righteous before God based on our works alone, and we can’t save ourselves.
Instead he is stressing that the gift of faith through the Holy Spirit is active and life-changing. When we read the Word, when we pray, when we receive the sacraments, everything is changed in us as we die to self and sin and rise to new life in Christ. That new life means serving, just as Christ served, and loving everyone, just as Christ loved. That means “caring for orphans and widows in their distress” (James 1:27). He writes, “Suppose you see a brother or sister who has no food or clothing, and you say, ‘Good-bye and have a good day; stay warm and eat well’–but then you don’t give that person any food or clothing. What good does that do? So you see, faith by itself isn’t enough. Unless it produces good deeds, it is dead and useless” (James 2:15-17, NLT). I know for a fact that I have not been giving like this. I have not loved others like this. I have been prideful and self-serving. All of you who have prayed with us, given us food, visited us, provided financial gifts– you have shown me first hand what it means to serve others.
One incredible blessing and example of serving others is Driving Hope. This organization was recently (in the last 2 years) started by several members in my church community. Its mission is to provide transportation to The Medical Center in Houston for medically fragile people in Central Texas. Daniel will require frequent follow up appointments in Houston, and traveling with him is no easy feat. As I mentioned above, he has seventeen different meds that have to be administered at different times, he has a g-tube that requires a feeding pump which means packing milk and getting the pump ready and cleaning it multiple times per day, and now he has oxygen. Traveling three hours is a monumental task, much less traveling six hours (3 there and back). Because of Driving Hope, I will be able to ride in a wonderful van and give my full attention to Daniel as his caregiver. Isn’t it crazy that this charity has gotten up and running at the exact time that we need it? Talk about a “God thing.” They just bought a van a couple of weeks ago, just in time for us to be able to use it. This is just one more way that God has provided for us. I am SO THANKFUL for everyone who has worked to make Driving Hope a reality. I know that this organization will make a huge difference in not only Daniel’s life, but the lives of so many people who face the reality of living with serious medical conditions. When you donate to Driving Hope, you are love in action. Your gifts go toward providing this vitally important service to the most helpless. Find out more at https://www.drivinghopetexas.org
We need your prayers now more than ever. Brian is driving back to Houston this evening and is bringing the car seat, the pulse oximeter that he has to wear the whole way home, the feeding pump and bags, and the oxygen canisters. Tonight Daniel has to pass his 4 hour car seat challenge. He has to sit in his car seat and not desat, just to be sure he can drive the whole way home. He also has to pass his chest x-ray tomorrow and continue to do well. Tomorrow if he passes his car seat challenge, if his X-ray looks good, if he doesn’t develop a weird fever or something ,we will be going home.
Pray we get home safely. Pray Daniel continues to improve. Pray we somehow stay sane while dealing with all of these new challenges. Most of all, pray for our continuing peace, trust, and hope in God’s perfect plan.
I’ll keep y’all posted! Whether we go home tomorrow or a week from now, we are so thankful for another moment.