I don’t know if I have the words to let you know how very hard and how very sad it is to live with and love someone who has a rare disease. It requires quite a lot of patience and understanding and prayer.


Perhaps someone you love has some terrible disease like cancer or heart disease. At least you can research it and find information and study it . You can search and find out the proper steps to take to end up with the outcome you desire.  Or at least you can find a cause instead of wondering where in the world this came from.


That is not what those of us who deal with loved ones with a rare disease can do. We search the internet. Sometimes there is a line or two about our disease, or someone has set up a symposium. But, there is never enough information for us to say…we need to do 1, 2, and 3. So instead, we try to find out through referrals who might just possibly be a good doctor to check this out. We go and he says, “this is not my area of expertise, but maybe you should see this doctor.”” And, we do, but she says, “I have seen so few cases I just really don’t know what you should do.” It’s all trial and error.  And disappointments and dead ends.


And, you cry. Because, why of all diseases did you have to get this one? And, why does somebody not know something? And, this is your child. YOUR CHILD….whose life is wasting away and who is living on pain pills and who see no future for himself and who can not begin a relationship because who knows when he’ll be confined to bed. This is the child who is that no longer…he’s a man of 33 now.  This is the man who wonders what happened to the world? Where did the people go?  For a while there was a preacher who cared. He moved across town and he never hears from him. He had good friends in school. Everyday, our house was filled with boys eating and playing ball! They still live around here, but they don’t  remember. His own brothers have families and jobs and things to do. But, they try their best. His cousins are available if he needs them, but they have their lives to live, too.  It’s not that they don’t care…it just  is what it is.

It’s got to be hard when the people who make up your social circle are your mom, your little 4 year old nephew, your housekeeper, and your dad…in the evenings.

There are some saints who remember to send cards and notes all along, and he is so happy to be thought of!  These always bring a smile to his face.  I bless those who remember.

What do you do when you are the Mama in this situation?  You feel as if you need to be close by.  But, you have things that need to be done, too.  If you go off and have fun, there is always that tiny place in your brain that says “this isn’t fair…He can’t go”.  For him…No family vacation, no trips to the fair, no trips to the beach.  And, if we go…who checks in on him, or makes sure he eats or gets his meds.  Everyone is so busy with their own lives.

And, there is God…Watching it all.  Understanding it all.  Seeing it all unfold.  But, seemingly, just letting it happen.  Prayers, He hears, but sends no reply. ” Help,” He hears us ask for, but He doesn’t sent it. ” Information” He hears us beg for, but we never get it. It would be so. very. easy. to be big time angry at this good God who  seemingly doesn’t heal or help or speak…in our case.

But, thank goodness, I know that I can’t see it all.  I know that there are two plains where life exists, and I see only one.  I know that this Good God does hear every word I say and every prayer I send His way.  And, I know …in my heart of hearts…that He is as heartbroken as I am.  I know for sure that He loves my boy more than me.  If I was Him…I think that I would be different…I would send help immediately…I would fix everything back to right…if I had His great power.

And this is why I don’t.  I can’t see tomorrow or next week or next year.  He can.  He knows every single problem I’ve spoken of here in this post.  But greater than this…He knows what awaits Alex when the time is right.  He knows what treasures and delights await him in his future home.  And He says, “Don’t fret.  Alex is in my hands.  I have the situation under control.  Sure, he’s suffering now…but just you wait to see what’s ahead for him.”

And, my friend, that is all we have to hold on to.  That is all that allows us to live in hope.  That is all that allows us to lift our hearts and praise and sing and worship this God who says, “Don’t fret.”  It is the belief in His promise of ONE DAY.  It is our belief that all this nonsense here on earth will one day be forgotten.  And it is the promise that I WILL see Alex strong, and steady…no cane…no wheelchair…no pain,,,no meds…able to use his brilliant mind however our God chooses. It is because I KNOW God will not lie to me and I will get to see it all!

And if you are in this same situation, you can claim that promise, too.  It’s as much for you as it is for me.  All you have to do is reach out your hand and claim it.If I can share more with you or if you have questions feel free to contact me.

On this Rare Disease Day, I choose to pray for research and doctors and scientists to make new discoveries that can help those who suffer.  I pray they will have the funds needed to work.  I pray for clear minds and wise use of materials that go along with great discoveries.  I pray they will find answers that elude so many.  I thank God that they are willing to spend their lives in service to others.



I would hope that some research could benefit my son…that something miraculous will happen for him.  But, above it all…I know he is OK.  He will be well.  He will be healed.  And this is the promise that gives me strength for the day! AMEN.

“You see, the short-lived pains of this life are creating for us an eternal glory that does not compare to anything we know here.”

2 Corinthians 4:17