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   

Last week, Levi and I had to run into Hobby Lobby for me to pick up one or 50 things.  Truly, that’s usually what happens…but, not today…what with a little helper tagging along!  And, since he thinks he is too big to ride in the buggy anymore,  it’s harder for me to keep my eye on him.  So in and out!

I had explained to him on the ride there that we were not buying stickers or candy or toys or anything today, except my paint.   Because, truth be told, he loves Hobby Lobby and can always find something that he needs in his arsenal. ( I wonder where he picked up that trait?)  But, he is in no need of toys.  You know…Christmas just passed and his birthday is next month.  Besides…my studio will not hold one more thing!!!!!  And, that’s the truth!

There is so much for him to see there, and he likes to check it all out.  I got him to bypass the Valentine stuff because it was almost gone.  So, he headed straight for the bunnies, and baskets and eggs.  Oh, such wonderful things to see!  I let him check it out, as I ambled slowly down the aisle.  Good-bye, Easter…Hello, Summertime!  Oh the myriad of things to use for fun in the sun!  He found all sorts of things that were too wonderful for words.  But then…

He stopped.  Still.  And, stared.  Mouth agape.  He didn’t move a muscle.  I was afraid he’d gone catatonic on me.  Slowly, very slowly…his hands came up to his cheeks.  He turned and looked at me as if he’d just seen something miraculous and life changing.

“Lulu.  Lulu, do you see it?  It’s beautiful!  I never saw one like it before!  It’s the best one ever.  Oh, Lulu.  Please get it down so I can feel it.”

Well, friends, I was floored.  Such emotion.  Such genuine awe.  I thought surely his eyes could not pop open any wider!  I looked where he was looking and there was absolutely nothing there worthy of such adoration.  I saw plastic water bottles, frisbees, cheap sunglasses, some children’s gardening tools, some sand pails and shovels.  But, for the life of me, I saw nothing that would cause such emotion in a little boy.

“Levi, what are you looking at…I don’t see.”

“Lulu, the BROOM…THE BROOM!”

And, there it was, a cute little broom, stripped with orange and yellow and blue, with bright yellow bristles and a bug face around the bristles…complete with ears.

“Lulu, isn’t it great?  Have you ever seen such a great broom?  Ever since I was a little boy, I wanted one of my very own.  I want to sweep at my house and help my mommy.  I want to sweet your front porch.  It’s just perfect!”

“Then, my dear, by all mean, you must have it.  We can’t leave this broom here…it has to go with you!  You can have your wish!”

“OH, LULU!  Really?   REALLY? But, you said I could not get anything today.”

Now, this was a teachable moment and I had not a clue how to explain to him that he had just melted my heart.  That seeing the wonder and delight on his face was like a shot of ‘feel good’.  That he is so dear to me that I want to give him everything he wants…anytime he wants it.  That it is so beautiful to see  joy and awe and happy on his little face.  But…I had said no  treats today.  What is my word worth?   I can’t give him everything he wants.  That’s not doing him any favors.  Nor teaching him about the real world!

“Levi, what did I tell you when we came in?  No stickers or candy or toys today.  But…this is not a sticker or a toy or candy, it’s a tool for working!  I think it’s most OK for us to buy this.”

“Really, Lulu?  It’s really OK?  I can have it?  Cause it’s the most beautiful broom I ever saw!”

“Then it shall be yours!”

He backed up and came running up to me and tried to jump in my arms.  Didn’t work…my back would not allow it, but he grabbed me around the waist and hugged as tight as he could and said,

“Oh, thank you, Lulu.  You’re the best Lulu EVER!  I am a happy boy!”

And, with that, I took it and put it in the buggy and we went to get my paint.

Now, I don’t know about him, but I felt 10 feet tall!  How often do we get to grant a wish?  How often do we get to make a dream come true?   How, often can we be ‘the best EVER’ to anyone for anything?  For just a few minutes, I was…

         Queen Lulu, the granter of wishes…the sharer of happiness…and the maker of dreams come true!

HOWEVER, later, when he tried to slip a light saber  (that lit up when you finished all the candy inside) into the buggy…I made him take it out and put it back.  I mean, really….it was a toy and candy!  Does he think I don’t mean what I say?  Maybe he’s feeling a little princely, too?

Today, I am following the title of my blog….GATHERINGS.  As Valentine’s Day is tomorrow…here is a little ‘heartfelt eye candy’ from me to you….a gathering of hearts.  Enjoy!

(To see my whole collection of hearts, follow me on Pinterest…www.pinterest.com/tonjalynn/heartfelt)

DH went on a business trip last week, and obviously I was on his mind while he was away.  I mean…what other reason would there be for him to bring me a ‘gift’ when he returned?  He does fairly well with the major days like birthday or Christmas.  but he’s just not one to randomly bring me a surprise.

So, imagine my reaction when he walked in and said, “I brought you something!”  Surely, he is kidding.  He never does gifts for no reason!  What could it be?  I love surprises!  NOW, imagine my reaction when he handed me this…?

Friends, I have learned many things in my life.  I have learned lesson upon lesson upon lesson.  I am so much more mellow than I was when I started my journey.  I am so much wiser.  And, one of the most important of these lessons is this… ‘there are times when words are just not necessary, appropriate or appreciated.’ You see, there are times when none of the words and phrases that make up our language will add anything to the moment.  There are those times when the greatness of beautiful word will not convey adequately how you feel about the situation.  Silence, then, is just best for all concerned.  And, this was one of those times.  (I did mutter a ,”Gee, thanks”).

I am a Southern girl, born and bred…never lived anywhere else except 200 miles north of here for college. Visited lots of the world, but lived only in the Deep South.  I am about as Southern as you can get.    So why, pray tell, do I need to know the Japanese art of decluttering and organizing?  I have visited Japan twice….and they are very organized…and uncluttered in their way of life.  Oh, I loved their country and their culture, and way of life, but I wouldn’t go to them for any ‘life changing magic’…or anyone else I know, for that matter!

And, while I am extremely proud of myself for my restraint when I was presented with this ‘gift’…that surely doesn’t mean I haven’t had a lot of things running around in my head just dying to get out….

Shall I share?

And, in accordance with the life lesson I alluded to earlier…that’s all I have to say about that!

PS…No.  I have not read the book.

This morning (Monday), Levi was looking for a teeny, tiny, itty, bitty gun that goes with his Star Wars creature.  Now the deal was, on Friday as he was cleaning up, I told him to put ALL the little guns in the box so he would not lose one.  Really, they are so tiny, you could easily think it was a piece of trash!  And when he wants me to find one…not fun!  When he went to the box this morning, that one particular gun was not there.  CRISIS

I asked him if he put it up on Friday.  He said that he did but he got it out again when his mother and I were talking.  He showed me where he thought it was…but, alas, no gun there.  We looked and looked…in several places.  But no gun.  TEARS

Don had come into the kitchen to fix breakfast…as he does every morning.  It is a tradition that he and Levi started long ago and no one can fix the breakfast now, but Pa!  Which is ever so fine by me.  Of course,  I do the getting dressed and combing hair and brushing teeth and driving to school part!  (And, we all know how fun it is to wrestle a pair of jeans and boots on a four year old who would rather be doing anything else!!!)

Well, my dear hubby usually has a word or two or ten to interject into how I can do life better or more efficient or faster or like him.  So, he told me that I should have gotten a specific place for Levi to keep all his Star Wars things, so they could all stay together.  It did my heart good to tell him that I did that. ( Nah! Nah! Nah-Nah! Boo-Boo!)  SMUG

Levi walked into the kitchen and I reminded him that he had the big box to put all his Star Wars things in and if he would just do that every day when he left, they would not get lost!

Don was looking at me like a goon and said, “Lulu is right, Levi.  That’s why she can always find what she’s looking for and never loses anything.”  SARCASM A MILE LONG  He did say it with a smile, but …you understand!

So, I sang, to the room at large..a strange, little silly song….”LuLu is not perfect. She loses things. She makes messes. She forgets where things are!    Oh, well, Big deal….Lulu is not perfect!”

Sweet, innocent, angelic Levi then took me by the hand and looked into my eyes with all the seriousness in the world  and said, “Why did you not tell me that before now?”

UH OH…slipped a little off that pedestal…

“Sorry, Levi.  I’m not perfect.  I mess up big time…lots of times.  But, one thing’s for sure…Messes can be fixed or cleaned up or done over.  And, I don’t mind doing that.  Believe it or not, some of the best lessons you will learn in this life come from when you really mess up bad!  We just clean it up and start over!  Besides, aren’t messes the most fun, sometimes! And, in the grand scheme of things…what’s a few messes?  I don’t put things away like I should.  I know I need to, but I get so busy.   I lose things.  And, they may stay lost for a while.  But, it’s so exciting when I find them again!  Oh, well, this is me. I love you.   I love your messes.  I love seeing you so involved in a project that everything else fades away! We can always clean up after…and we do!  And, we’ll try to do better keeping up with the Star Wars guns.  OK?   Your Not Quite Perfect Lulu”