Thursday, November 16, 2017

Our New Normal

We walked into our house late late Friday night and I remember smiling with delight at how clean and orderly it was.

Five days later I am staring at the chaos and wondering if I will ever find order again! It is amazing what one little girl can do!!

It's been a wild five days. The first few were spent with an upset, sick on her stomach, jet-lagged little girl who was in fight/flight mode. Pinching, kicking, dirty looks were the norm. The last three have found a much calmer, sweeter and extremely endearing little girl who is quick to laugh and who loves cuddles and kisses and loving hands.

Medically she has already been through a battery of tests including an EEG that normally takes 4+ hours to several days in order to accurately assess seizure activity. She had enough seizures in 25 minutes that they could have stopped at that point. They wanted a full hour so little girl had to lay for 35 more minutes.

We were stunned at how well she did at the hospital and at the doctor's office. We were expecting her to fight and cry but instead she just took everything in stride.

It will take time to sort out her epilepsy. More tests are scheduled so we don't expect quick answers. Her medication has been tweaked and we are waiting on a helmet with face mask that will allow her to have a bit more freedom without having someone hanging on to her non-stop.

No. I'm not excited about putting my adorable little one in an ugly helmet with a face mask.

It hurts my heart a bit.

But I also hate watching her smack her head over and over again.

We can't ever let her out of our sight. Not for a second. She requires eyes on her at all times and hands on her whenever she is up and walking. It's not normal but it is our reality.

I almost lost it yesterday in the bathroom at the doctor's office. They needed a urine sample so I  was trying to navigate the logistics of the process. I had one arm around her and was trying to get all the stuff ready with my other hand. I wasn't holding her good enough. She had a seizure and her head slammed right into the cabinet. I sat in the bathroom comforting my screaming little one and felt like screaming myself.

On a scale of low to severe epilepsy - she's been given the severe label.

We knew that in the very first hour of meeting her, but it's still hard to hear when it comes from the mouth of an expert.

There are silver linings in our new normal. The little boys have discovered that their little sister LOVES Legos. She will sit in their room with them and will build right beside them. They are so relieved that she isn't Miss Destructo but instead is content to make her own little creations. It is precious to stand outside the door and listen to all three of them chattering away. Two who are conversing with each over about what they are building and one who is chatting to herself or quietly singing a little song.

She is able to play quietly by herself but tires of always sitting. She is weary of the constant restraints her epilepsy puts on her. She's a little girl who wants to be able to walk across the room without everyone freaking out about it.

Until her seizures get under control we will continue to freak out. It is our new reality. It's not normal and we realize this.

Keeping eyes on a child 24/7 makes it difficult to get even the simplest tasks accomplished. It's probably the hardest part. Just about every task requires needing to go to another room to get something. That requires either picking her up to get whatever is needed, risking leaving her alone and running fast to get whatever is needed or just not doing whatever it was that needed to be done. Right now we tend to just not do whatever it is that we wanted to do! She has seizures every few minutes. We just can't leave her.

It's why chaos is our new normal. It's why my house looks like a bomb just went off. It's why it has taken me the entire day to write this blogpost. It's why all the protesting in the world from one little girl is not going to keep us from putting her down for a nap each day. She's safe in bed. Praise the Lord her nannies trained her well to never ever get out. Praise the Lord!!

We are plodding through. We love our little girl. She's stolen our hearts and has us firmly wrapped around her little bossy finger. We are working hard at keeping her occupied and entertained. We are praying that answers for her epilepsy will come soon. We are plodding through.

It is our normal for now.


  1. Thanks for the updates - despite the difficulties, it's clear that considerable progress is being made on several fronts! I am glad that Mary is settling down and is happier and more at ease, and expect that will continue. Legos are a great bond!

    Does the hospital provide a translator? Though it sounds like Mary is being a trouper.

    As for the helmet: is it available in a pretty color, and can it be decorated with stars or flowers or something cheery? I hope that as Mary's seizures get under better control, her world (and yours!) will open up.

    Hang in there - a messy house is a sign of a creative and abundant life (or so I frequently tell myself...:-) )

    Susan in Kentucky
    Cousin to 2 from U.

  2. Julia, I've been following all your updates but haven't posted. I am looking forward to the day when your specialists find something that controls the seizures so she can get on with other things. I can only imagine what a surprise that will be for her when she stops having the seizures. You are in my thoughts and I am so glad to see girl toys on that floor!

    Sue H.

  3. I wish I was closer to come help you

  4. Praying praying praying for the very best treatment to get the seizures under control. And for strength and endurance for all of you!

  5. I stand in complete and utter awe of the depth of understanding you have of your little girl. You clearly understand and feel her situation; she just wants to stand up and walk across the floor without everyone freaking out. This is an outstanding gift the Lord has given you, this knowing. It means you are meeting Mary where SHE is, and by God's grace, you can bypass yourself and enter in to her unique, demanding, unknown to you previously world of living with the seizures. Only God could give you this. He gives mothers what they need to mother. Thank you God, for giving Mary SUCH A MOTHER! Bind them together, even in this place of fear and pain and create Your beautiful masterpiece!
    Sending love and praying,
    Kelly M

  6. Oh I am hoping for a breakthrough for this little one! Is she having drop seizures? So they are short and frequent? Not the spastic/stuff/jerky kind? Curious is she experiencing only one kind or does she have a mix of seizures. I wish we could understand the brain better in order to get these to stop for people. They are heartbreaking. We dealt with absence and drop and myoclonic seizures for a few years before our little one left. I know one day science will understand these mechanisms of misfire in the brain better and maybe even a cure!! but until then I just hope for relief for her so her life can be a bit more normal and her cognition doesn't suffer. She deserve to experience all of life that was placed on hold while in those orphanages. Sweet love.

    1. She drops and then jerks - about 3-5 seconds in total... very short - very frequent - about 50+ in a day and that is conservative.

    2. Goodness that is so many. When our little one was having them, it was by the point where her brain damage had left her bedridden so while they were sometimes nearly as frequent as this she was not mobile and at risk of hurting herself in the same way your little girl is. Hers were often absence, so she would space out for a moment then come back to us. I called her little brain an electrical storm. The myoclonic type were pretty frustrating. She never got relief, but she had so much other stuff going on and was on so many meds it was hard to narrow down what was helping, what was hurting more than helping and what wasn't working at all. We never got a chance to try some alternative things we'd researched. She's forever free of her broken body now and surely running around Heaven keeping the angels busy. I hope for little Mary Sasha that she gets to experience so much more of life soon! I hope something works quickly and so well that her epilepsy is but a blip in her life and not a major major part of her every day.

  7. Hope you get some answers soon and the medication she needs. Mary is so cute.
    Having a clean house is wonderful but nothing compared to being able to help your little ones to heal and adjust Sending strength
    Kate Germany

  8. It seems that her little fragile soul starts sensing you are good people and try to help her. God bless her heart :)


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