I have never posted on this board and I know that a message board isn't the ideal place to "lay it all out there" but I need to get this struggle out.

A bit of background. I have always grown up in the church. I am a PK and have always attended but my faith consisted of Sunday and nightly prayers. But I have always been blessed with family health, solid jobs and a fulfilling life.

About 6 weeks ago my families life was flipped upside down. We had just returned from the vacation of a lifetime and my daughter who loves dance and has a dream of making the drill team had just turned 12. She was experiencing knee pain from her nightly stretching routine and a "just in case" dr visit turned into a diagnosis of a rare form of muscular dystrophy which will lead to a lifetime of pain and daily muscular atrophy.

This leads me to today's message regarding the upcoming holiday season and giving thanks. I am truly struggling with that this year. I know that we still have our daughter here with us and many would give all to be able to say the same but it truly is tough. I understand the saying "Live for today" more than I ever thought I would. I'm not excited for the future and what it may bring. It is hard to truly "give thanks" this year when because of me and my genetic makeup our daughter is looking at a life of continued pain and loss of mobility.

I trust and know that god has a plan and I pray that a gene therapy is on the horizon.

If you read this entire thing, thank you. As you are setting aside time with the lord this holiday season, please pass a quick prayer for those families who might be struggling with something. Gig Em and God Bless

The information about something so life changing for your daughter is new. Give yourself time to process and to be angry and sad and confused. Just keep coming back to God, reach for gratitude, and don't hide your struggle. God is big enough for a genuine relationship built on questions and struggles, despair and faith.

My youngest daughter is medically complex and it has ups and downs. Moments of gratitude. Moments of crying out to God. There is support for you and your family in dealing with a devastating diagnosis and chronic or progressive disease. Don't be afraid to seek it out.

Prayers for you, your family, and your daughter.

Prayers. I have a daughter with complex medical issues. God is in control. I have learned a ton from this experience, especially to savor every moment of life. It is all for good for those who love the Lord.

And there will be great days, good days, mediocre days, bad days, and horrible days. Don't get too high or too low. Trust the Lord completely and Let Him deal with the crap.

In this fallen world, the Cross is the means of salvation. Our Blessed Lord told us to pick up our cross and follow Him. He presents us with our own crosses throughout our life and He does this out of profound love for us. By accepting these crosses, we can immitate Him albeit imperfectly. In the end, uniting our suffering to His will draw us closer to Him. Through one lens, it's hard and it stinks and it's not fair. Through another, it's a means to be closer to Him and through that closeness, we can learn to love the cross that draws us closer to Him.

I have a wife with complex medical problems. So first, know you aren't alone. There are others, including Christ, on this same path, though at times it may seem dark and lonely.

Somethings that give me hope. Knowing that God is in the business of restoring and making all things new, even if that takes longer than my lifetime. He is big enough to do anything. I often think about Shadrach, Meshach, and Abednego and their testimony that God is able to save, and even if He doesn't, we will trust Him. That second part is hard, but hard times grow our faith. And you'll have times of doubt and questioning and God can handle that. Job shows us that God can handle us demanding He answer us without striking us with lightning.

Gratitude, you will have to practice it until you feel it. Lots of strategies exist, for me it is watching the sunrise and sunset. I am not promised a tomorrow with my wife. But I can still look at the sunset and say "wow God, that is amazing," even if I don't feel it. That's my daily reminder. From there I can build on.

Finally, don't blame yourself. You didn't cause this. It isn't your fault.

I don't have any words of wisdom. I just want to say that I am so sorry that this has entered your life. God's grace is the answer to your needs. These are the times when we grow the most in our relationship with God.

Really sorry to hear that. Our priest says all the time, everything that happens to us - good and bad - is for our salvation. I wish that was something I heard and said, oh yeah that's fine and everything is easy, but it isn't. I will remember you in my prayers.

My middle daughter was born with Down Syndrome. It was undiagnosed/missed on ALL prenatal visits. We're still brought up locally in the medical community and act as a resource for the rare instances of similar around the state when called upon to help processing
I say this because while my family struggled with the news and subsequent life experience changes, we only know our daughter in the capacity God gave her to us in
I cannot comprehend being able to process the "what ifs", frustration and confusion you have. But, I'm glad to know that you're relying on your faith to persevere and support you.
As parents, we always want what's best for our children. Some of us don't get to walk that path with them, though. Is it God testing our faith? Is it God offering us the privilege to be living testimony of His grace and plan for all of us? Who knows?
What I can say with absolute certainty is that God knows that your love for your daughter is unwavering in whatever capacity she may be faced with, and your devotion to her and to Him both will be rewarded
If you'd like to chat, please reach out to me. I may not have sage words, but I'm a pretty darn good listener :-)

I have no answers, but can understand what you're going through as my daughter is low vision and was born with rare eye condition that still requires constant monitoring, etc. so she will maintain what sight she does have. She is 16 now and I worry daily for her independent future. I almost completely walked away from God, but it was better to be close than to run. Life is struggle, but we don't want that for our children. I hear what you're saying as we blame ourselves as parents. Blame our bodies, our decisions, our shortcomings. Best I ca tell you is just keep living. I will work to remember you in my prayers.