Time for difficult decisions

LaRue drew this and copied the verse for

me shortly after Alex's first hospital stay.

It has been a great encouragement to me.

One challenging thing about navigating life with a rare kiddo is that even the specialists have limited knowledge of the disease and how it affects those with it. We have been blessed with truly amazing doctors who have been willing to have many conversations with us over email, phone, and in their offices. They have allowed us to share our hearts and our tears and have really listened. They have shared their knowledge and understanding but also told us when they didn't have answers. Many times since the start of this journey there have been questions and confusion in the search for a diagnosis. This has been frustrating at times and heartbreaking at others. Having decisions to make about our daughter's care without completely understand the disease has been challenging but we have continually prayed for wisdom to know what was right and for the courage to follow through with whatever that plan is, and for peace in the process.

In praying for peace I have come to understand something that I never did before. I have prayed for peace during difficult times before but never like I have prayed this past year. Never with the same amount of surrender and complete dependency on God. This past week God gave me peace but not in the way I thought it would come. I thought peace was the way it is often spoken about where there is complete rest with no concern, fear, or hesitation. No doubt or lack of strength. I thought it would be all sunshine and butterflies and the heaviness of decision making would be completely lifted. This is what I thought I was asking for but what I received has been so much greater. The peace that has come doesn't mean that I don't hurt for my precious daughter or that my heart doesn't feel heavy over the decisions that need to be made. Those things are still there but the peace that I have is in knowing, without a shadow of a doubt, that God is going before us and that His plan for her life is perfect and God is not surprised by one single part of it. This peace is in God holding her, holding our family, and holding our futures in His hands. The peace is in knowing that I cannot do this, I cannot keep it together, I cannot fix my child, but that God can and whatever he wills is good. In this peace there was a huge weight lifted off of my shoulders and I am so thankful for God's mercy in showing Himself to me in this way.

Since finally getting a diagnosis back in the fall of last year we have been presented with a couple of options for treatment and in all honesty there aren't good options. There are a lot of difficult options. Doctors have told us that all treatment options come with pros and cons and we have had to navigate all of those and determine what gives Alex the best quality of life. Multiple times treatment options have changed as new information has become clear through further testing and understanding how this disease is affecting her. There have been times where I wished there was only one option and doctors were just telling us to do it and everything would be so much simpler. In reality that isn't what I would want at all and Brent reminds me that with my personality I would likely go searching for another option anyway, and he is probably right!! That is the stubborn streak he loves so much about me!! Love it or not, it is the same stubborn streak, or we could call it determination, in Alex, that will help her live her life to the fullest no matter what happens.

How you can specifically pray for the rest of the household.

At two years old, Boone doesn't really understand any of this but he certainly feels that life is different and Mommy is gone a lot. He has become much more clingy over the last several months as his life has gotten more confusing. He is still the same whirlwind, happy, little guy with the greatest giggle but when I get home from a long day of appointments with Alex he wants to spend the rest of the day snuggled in my lap. He is growing so quickly that I will take all the snuggles he wants to give me. He and Alex often both just want me to sit on the couch and snuggle. It is very much like having two toddlers again, even though Alex is five.

I know each of the kids is dealing with all the changes and unknowns in their own way. Sometimes we recognize it as part of the struggle and sometimes we don't. Ethan, 14, LaRue, 12, and Kyle, 10, and Paul, 8, have needed more one on one time with Brent or me. It is difficult when living in the midst of chaos with one child to make sure that the varying needs of the others are being met as well but we are all learning as we go. We have been so impressed with our kids and how they have stepped up to care for one another, help out with lessons when I wasn't able, helped with housework and even just offering to play with Alex and Boone so they have a buddy. One of them recently told us they just want things to be right again. There was so much of what we are all struggling with coming from the heart of that child. We were able to have some good conversation about what is right being what God has called us to in this season, even though I completely understand that often it does not feel right. Each has his or her own struggle, including mom and dad. We are thankful that we know there is Grace!