Because of Jovie’s journey and medical challenges, our family has learned to trust God more deeply and embrace the challenges that come our way. And we know “all things, God works for the good of those who love Him, who are called according to His purpose” (Rom. 8:28). Our family motto is: “God grows us through hard things.” While I would never want my daughter to have to face the medical challenges she has walked through, I can see how God is using these things to grow and shape her along with our whole family.
This journey has had many twists and turns; I could not have anticipated all the things Jovie would face at such a young age, but I mostly feel so very thankful for the ways that God has shown up to care for our family over and over while we traveled this road. There are certainly challenging days and, as all parents with a child with T1D will tell you, the sleepless nights catch up to me quickly. But I can look back through our challenges and see all the ways God has grown us and brought us closer to Him.
If you are in a situation where you are homeschooling and caring for a medically fragile child, my advice is to lean into God and trust Him with all the plans He has for you and your family. I know that can be impossibly challenging, but I know God loves Jovie and all our children more than I could ever dream of loving them. Because of all these challenges, I can trust Him COMPLETELY with my life and the lives of my children.
Jovie’s journey so far has been filled with unexpected moments, but I honestly never wish for things to be different. Looking back, I see the specific ways God has taken care of our family through these hard things and I would never want to take away the incredible lessons He has taught us and the blessings He has showered on us. Hard things don’t mean your life is over. They mean that new adventures are ahead, and you need lots of practice and growth to get ready for them.
Another suggestion I would give is to find people who can walk this path alongside you. Hard days are inevitable and having someone to hold you up when you are weak and celebrate with you on the mountain peaks is a gift more precious than gold. These people will love you when you are not worthy of love and will show up in ways you never expect. Even a Facebook group of other people who are walking your journey can be an invaluable support system. These people will understand your struggles and often become lifelong friends, because they understand what you face on a daily basis.
If possible, allow your child to participate in their own care as much as they are able. I know that is not always an option, but in our case, our daughter will eventually have to manage her health on her own. It is important that she has a say in her own medical decisions and is knowledgeable about the care it requires to keep her body healthy. Jovie makes mistakes once in a while because she is only 9, but the mistakes she makes now help her to learn how to better care for herself in the future. Allowing her a say in her medical decisions gives her confidence in herself and encourages her to be knowledgeable about her conditions.
Finally, remember that your child’s medical diagnosis doesn’t define them or your family. The challenges they face on a daily basis will be a big part of their life, that is inevitable. They will be able to relate to others who are facing the same challenges or challenges that are similar, but it is not the only thing that is important about them. There will be days your child won’t want to be associated with their disease at all and other times they will be proud to be the person who stands out because of their health situation. Both feelings are normal and are to be expected. We work very hard to remind our daughter that she has T1D and Celiac Disease, but she isn’t those diseases. Our daughter has interests in sewing, photography, theater, writing, Star Wars, and reading (Babysitter’s Club is her current favorite because one of the characters has T1D just like her). Just like you will feel tired of this medical journey, sometimes your child will feel tired of it too and that is when it will be important that their identity isn’t wrapped up in their diagnosis.
God has created and continues to create something beautiful from the ashes of our struggles. I am in awe of the way He has used hard situations to make us stronger and to draw us close to Him. Blessings don’t always look like what you might expect, and, in our case, I will never be able to thank God enough for the ways He has blessed our family through this challenging journey.
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