A Goodbye {for now, I hope}

I have struggled over the past two weeks to decide how much I wanted to share in this space and when I wanted to share it.   Since the time has come when saying goodbye (for now I hope) is no longer optional, I guess now is the time.

In addition to continuing to spend a great deal of time adjusting to Tomas' FPIES diagnosis and helping him grow in the best way he can, including early intervention services, Lucie has been quite sick all fall.  To make a long story short, she was in the hospital over the weekend where she was diagnosed (tentatively) with a seizure disorder, probably epilepsy, although further testing will be needed to rule out all other possibilities.

Words can't express the shock with which this news has been received.

At 5:00 this morning I was awoken due to a suspected seizure which I'm apparently supposed to treat as normal occurrences at this point in time.  I laid with Lucie for awhile where she had a confirmed seizure.  I finally gave up on sleep and got up and came downstairs to vacuum the floor... at 6:00 in the morning.... because someone had spilled popcorn all over the living room.  After  getting dressed and distributing morning medications to now two of my children (being careful not to mix anything up), I made multiple phone calls to rearrange our daily schedule for another set of appointments and while I was doing that FPIES baby thought he should eat some dog food.

All before my first cup of (too weak) coffee.

I spent breakfast on the phone while my older boys argued with the middle two about keeping the younger two safe.  In the past 3 days they have seen three tonic-clonic seizures (formerly known as grand mal) and are all entirely stressed beyond belief.

I don't blame them.  Two of them are due to perform in the Nutcracker in a week and are in the middle of extended full cast rehearsals.

Even right now I had exactly seven minutes between laying Tomas down for a nap and when he woke up to swap laundry and think about what on earth I want to say to you.  I never ate breakfast, although at the moment a second cup of coffee (stronger this time) feels more urgent.  Something has to go and blogging has to be at the front of the list.   I doubt it will be the last thing, but I just couldn't disappear without a word, writing means to much to me.  I unfollowed 100% of my friends list (yes even my best friends) and a good number of blogs last week but that is going to have to be just the beginning.

 I still have a book coming out some day with Peanut Butter & Grace.  I've lost track of how many times I've been given a projected timeline dte so I won't promise you anything but I'll try to come tell you when it's available.    My page will still be here if you have people that you want to direct to the archives or previous articles.  The quick start guide will stay, the email list will not.  My Teachers Pay Teachers store will stay, just don't plan on it growing.

I hope that this goodbye is temporary.  A season while we get through this period of adjustment and find our new normal again.  I will not delete the blog's Facebook page and I am undecided about Instagram.  While I close this post, I'm sitting next to Logan doing reading work and spelling sentences with the moveable alphabet.   He just wrote "mug and cup" because the picture was both.  These kids will be my saving grace...for each other too I think.

A friend this morning asked me why we are always so blessed.   I have no idea.  But I will tell you that is the best, most useful thing, anyone has said to me in the last two weeks.   I don't need to be asked why we are so "unlucky" or if I've tried the latest xyz to keep my kids healthy.  I don't need to be told that my lot in life is unfair.

I don't know why we've been so blessed but I'm learning to count it all as joy.  (James 1: 2-3)



"As to the past, let us entrust it to God's mercy, the future to divine providence...... Our task is to live holy the present moment."    St. Gianna Molla


Angie said...

Blessed beyond belief! God is so good. Know of my continued prayers. Keep living holy in the moment. Until next time...<3

Meghan said...

Love to you all! Know that we are praying and will continue to do so. All of the little girls had continued to keep Lucy in their prayers every night and I was about 3 nights away from requesting they alter there list a bit (since it keeps growing and growing)...she's back at the top of all of ours, as are you!
I love the quote from St.Gianna...St.Gianna, pray for us!

Deb Chitwood said...

I'm so sorry you and your family are having to go through this. Sending lots of love and prayers. I'll hope to see you online again in the future.

Meredith said...

You are close in my prayers, Heidi, and I only wish I was there to be a physical help (and for a hug!). It's nice to see Lucie's happy smile from the hospital. I hope she is not too scared or in pain. I know how much you've been through, which is why news of this stunned me, but the thing about you is you pick up and find that new normal, trusting that God is carrying you all and teaching people like me to offer my suffering as a prayer. I love that quote from St. Gianna, as well, and from James. There is always something to be thankful for, and if we can think of nothing else in the moment that seems good, our faith that we don't do this tough stuff alone is a grace. And that's a lot. Love and prayers, my dear!

Marisa said...

Oh goodness. Lots of love to you all. I wish I was nearby to lend a hand, because it sounds like you could use at least 8 more of them. I hope you find your groove soon. I'll miss your words.

Lea said...

Oh goodness. Love and prayers for all of you. Get back to us when you can.

Elementary Observations said...

Prayers and lightness for you and your family. Looking forward to your eventual return