"Let all that I am praise the Lord; with my whole heart, I will praise his holy name. Let all that I am praise the Lord; may I never forget the good things he does for me. He forgives all my sins, and heals all my diseases. He redeems me from death and crowns me with love and compassion. He fills my life with good things. My youth is renewed like the eagle's!" ~ Psalm 103:1-5
After last week's post about Chelley and Naika's recent experiences and difficulties with Sickle Cell Disesase, I promised a continuation of that part of our story. I mentioned that even in the midst of the stress, pain, fear and uncertainties of those hospital visits, God was so faithful and had blessed, comforted, and provided for us in so many ways. Many times, I find myself quick to request prayer, quick to share a need or a fear with those around me, and then when God answers those prayers, I am not as quick to thank Him and give Him glory for all that He has done in that situation. I do not want to be like the nine lepers that were healed and didn't return to thank Jesus for their healing. Instead, I always want to be like the one who returned to offer gratitude to Jesus for a life restored. So, here I am to share some of the amazing and wonderful ways that God has cared for our family on this new adventure of chronic illness.
These blessings are in no particular order of importance or value...just records to help us remember and proclaim His faithfulness, His AMAZING attention to detail and His perfect, timely, and abundant provision.
- God allowed us exactly 6 months (to the day!) of good health and "pain crisis-free" living with both Chelley and Naika before the difficulties began. This meant that we had time to get them settled in and acclimated to our family and to our country, to work on attachment and build trust, and to have them understand and speak English fluently, etc. All of these were a huge help as we navigated through ER visits and hospital stays. I cannot begin to imagine how much more difficult those experiences would've been for all of us if we hadn't had time to build those vital foundations before all of this happened.
- The timing was also a blessing in that Chelley's first crisis started the very next week after we'd finished our school year. It would've been virtually impossible to stay on top of finishing our school work while spending so much time with hospital visits and Dr. appointments.
- During Chelley's first pain crisis, when we didn't know the best way to respond to her pain, God provided an opportunity for me to connect with our friend, Dr. Jay Homme, who just happens to be a pediatrician at Mayo, and whose twin brother just happens to be an ER doc at St. Mary's. They were able to provide the professional insight that we needed, while also paving the way for us at the ER so that they knew that we were on our way. I was hesitant to "take advantage" of Dr. Homme's expertise, but the persistence of my wise friend Emma paid off at just the right moment, when Chelley first spiked a fever and the situation became even more serious.
- A HUGE blessing that is not lost on us is the fact that we live in the very same town as the world famous Mayo Clinic, which is one of the best possible places for our girls to be treated for this disease that is fairly rare in our neck of the woods. I've lived in Rochester all my life and have never needed to be seen as a patient at Mayo Clinic. I've been grateful for the small, local clinic and hospital that has provided all the care for our family prior to this development but they are simply not equipped with the knowledge and expertise necessary to treat a disease like Sickle Cell. We could live in a community that is hours, or even days, away from a place like the Mayo Clinic. Instead, when we need to get our girls to the ER quickly, or take them in for their monthly appointments, we have a 10 minute drive to world class healthcare.
- We've always believed that God moves and works in the referral process to make sure that the children who need families are matched with just the right family. As soon as we had their names and pictures, we were certain that Chelley and Naika belonged in our family and that we are privileged to be a part of the unique plan that God has for their lives. Even with that knowledge and certainty, it is really amazing to become even more aware of the ways that God planned for these precious girls...who were orphans in the poorest country in the Western Hemisphere...to be placed in a family that lives in Rochester, MN, where they can have regular and consistent access to some of the best health care in the entire world!! In Haiti, there are so many factors that cause the health care to be unreliable and often simply unavailable. I know families who have brought their loved one to the hospital in desperate need of care, only to be turned away because they couldn't pay in advance for the services. I've heard that if you are able to be seen at the hospital, you usually need to provide your own food and water, as well as bring a family member or friend that can provide your nursing care. And here are our sweet girls, receiving gentle, professional, knowledgeable, and attentive care in the best possible place. The magnitude of what God has done for these girls and for our family as a whole is truly astounding!!
- It's also become very clear to me as I've learned more about Sickle Cell and about what our girls need in order to live healthy and pain-free lives that there is no "logical" explanation for how they survived with so few complications during their years in Haiti. Some of the things that we need to watch for on a daily basis include making sure the girls drink enough water, eating healthy foods, not getting overheated or dehydrated, taking multiple medications twice a day, and making sure that we respond immediately to any complaints of pain or signs of fever and infection. We were told to treat Chelley's pain as soon as she complains of any area in her body that hurts. Using that advice, we have needed to give Chelley pain meds about 20 days out of the 30 since she was last hospitalized, just so that we can make sure that we stay ahead of any pain and thus avoid another pain crisis. Now, just think with me for a minute about Haiti...a place where 4-5 million people (roughly half of the population) do not have access to clean water, where 7 million people do not have access to proper sanitation, where food and medicines are in short supply, and where infections can be rampant all around. We don't know much about Chelley's first 5 years of life and how she may have struggled with her disease during that time but it is obvious that she would not have had all that she needed to stay healthy. In a country where 1 child out of every 8 dies before they reach the age of 5, it is nothing short of miraculous that Chelley survived her first 5 years with this disease. We know that Chelley and Naika had some of the best care in the country of Haiti once they got to GLA, but even there, it would've been impossible for them to manage and track their water intake, medicines, dehydration, and pain levels on a constant basis. Imagine how quickly infections can spread in a setting with that many kiddos in close quarters. Not to mention...Haiti is hot!! How do you keep kids from overheating in a tropical place like Haiti? The Toddler House where Chelley was living had 70 kids living there much of the time. I have a hard time keeping track of all of the necessary details for her health and I only have 5 kids to take care of!! Not to mention, the staff at GLA didn't even know that Chelley and Naika had Sickle Cell Disease until 6 months before they came home. The medicines that we are giving them on a daily basis now were not available to them at GLA, and yet they only had minor complaints and illnesses during their 2 1/2 years there. As far as we know, Naika has never had a pain crisis and Chelley only had 2 during her entire stay at GLA! While we were waiting for them to come home, God gently reassured me that He was watching over our two precious "sparrows" while I could not be there to care for them. Little did I know the COUNTLESS ways that He was protecting and preserving their health and their very lives until they could come home and finally be able to receive the care that they need.
- One of the biggest stressors at the beginning of this process was the fact that we did not have any insurance coverage for treatment relating to the girls' Sickle Cell Disease. The healthcare co-op that we are a part of was denying any claims for Sickle Cell as pre-existing. It was very stressful to be admitted to St. Mary's Hospital without having any idea of how the mounting medical bills would be paid for. We found comfort in trusting that God knew what the girls would need when He placed them in our family and that He would provide some kind of coverage or provision for them to receive the care that they needed. However, it was hard not to give in to fear and doubt at the time. As it turns out, God's provision was more than we could've imagined. We were able to get the girls on a Medical Assistance program that is covering 100% of their visits and medications at no cost to us. Simply Amazing!!!
- Yet another comfort and blessing during the hospital stays and Dr. appointments came in the form of our wonderful support network of our friends and family. As soon as the crisis began, our loved ones were praying for us, bringing us food, welcoming our other girls into their homes for hours at a time, visiting us in the hospital (sometimes with Starbucks coffee in hand), and being the hands and feet of Jesus to us in numerous ways. We got to see the body of Christ in action on our behalf and it brought us such joy and comfort.
- Sometimes a dose of perspective can be one of the biggest blessings of all. I was somewhat overwhelmed at first by the learning curve of how to care for our girls, as well as the realization that life would be different with two children with a chronic, lifelong illness. However, as I spent time in the Children's Hospital at St. Mary's, I realized that so many families are facing trials so much bigger and more serious than ours. "Chronic" isn't the same as "terminal" and I'm so gratefully aware of the fact that our girls can still lead a full and healthy life, despite their disease. My heart breaks for parents that are watching their children battle terminal illnesses and it helped me to put our situation into perspective. I was also reminded how many times I cried out to God before our girls came home that I wanted to be the one to hold them when they cried, to comfort them when they were in pain, to provide for their needs on a daily basis. I have had the privilege of doing that each day, in sickness and in health, and after waiting for so long for them to be here, that privilege is not lost on this mama. I would've been undone if these crisis were happening while Chelley and Naika were still at GLA and I had to just wait, love, and pray from a distance. What a blessing it has been to be the one to love and care for our newest daughters.
"We only enter into the full life if our faith gives thanks....thanksgiving is necessary to live the well, whole, fullest life." ~ one thousand gifts, Ann Voskamp
1 comment:
Praising Him with you!
Post a Comment