Holding on and Letting Go

So much life has happened since we last “talked,” and I’ve honestly been too overwhelmed to stop long enough and recognize it all.  If you write it all down, that somehow makes it more real.  By now we know that I like to “keep it real,” and that doesn’t always mean it’s pretty!😬

Shortly after Lindsay turned six at the end of August, my mother-in-law, and my children’s “Gran,” passed away unexpectedly. I think we all believed that when she went to the hospital it would be a fairly quick stay, after all she had been through and survived just a couple of years ago.  When the reality started setting in that she was ready to go, I think I can speak for all of us in saying that she was the only one ready.  We simply weren’t ready to tell our kids, to accept it ourselves, and we weren’t prepared for how different life would be afterwards.  I lost my first grandparent when I was in sixth grade (the same age as my boys), and I still remember what a profound effect that had on me.  The same morning that Gran passed away, I got a call from Lindsay’s school that she wasn’t feeling well.  She pretty much acted miserable for the next few days, and I am convinced that she sensed what was going on in her own little Lindsay way! I still love to dress her in the sweet little clothes Gran had just gotten for her birthday!

We know all too well that the world keeps spinning, even when we feel as though it should stop and mourn with us.  One of my favorite memories during those first hard days was the boys’ determination to run their next cross country race in honor of Gran. They both ran their hearts out and finished together with their best times ever!  They have done really well in their first year of middle school, and Lindsay has seemed happy in kindergarten.  I know Gran would be so proud of them!

One day a few months ago when I was watching Lindsay work with her physical therapist, I noticed how she would become frightened if she thought Mrs. Carol might let go of her while she was practicing standing.  I immediately thought of the years that she had no reaction at all to the possibility of falling.  One of the things that comes along with her syndrome is that almost everything has to be learned.  Even fear.  Whereas we have reactions that are just innate, children with Pitt Hopkins most often do not.  While it might sound odd that I would be relieved that she felt fear, it meant that she had finally made the connection of that particular cause and effect relationship.  As it often does, though, my mind got to wandering and thinking about how we all struggle with learning when to “hold on” and when to “let go.” Sometimes we have a choice, and sometimes the choice is made for us.

Getting fitted for some new braces

I began thinking of all of the things I have a hard time just letting go.  Someone hurting one of my children or family members, Lindsay having to struggle daily to do the most simple of tasks, fear of the unknown, and wishing just one day could be “easy,” are chief among my list of things that I wish I could simply release.  For whatever reason, it feels safer to keep holding on to what feels familiar.

One thing Pitt Hopkins Syndrome has taught me OVER and OVER again is that I am not in control.  I never was, but I at least liked to pretend sometimes! 😉 Even with something as unpredictable as a rare disease, I like to compartmentalize things and make them more manageable for me.  Just when I think I have everything as “figured out” as I can have it, something new always seems to present itself.  This past December,  that something was the beginning of seizures for Lindsay.  We knew based on the information we’ve learned about this syndrome that seizures might be likely some day,  but we were certainly hoping to be able to avoid them altogether.  We managed to get Lindsay into the neurologist the following day after she had her first seizures at school and that same evening at home.  We were able to have an EEG done while we were there, and she had a small seizure that was recorded.  We thought we had a simple enough “fix,” when they determined what type of seizure she was having, and we immediately began medication.

Lindsay did well on the new medication for almost a month or so, before she began having seizures again.  I’ve lost track at this point, but we have increased her dosage quite a few times.  She seems to do well for a bit, and then she will start having multiple seizures again.  The most terrified I have been as a parent, other than when we received her initial diagnosis, came on Valentine’s Day.  As I dropped her off for school, I noticed that she suddenly slumped over her chair while going into the building.  I quickly parked and ran over to her and her teacher, and she was in the middle of a seizure.  It took her a few minutes to come back to being herself, and we determined she was probably going to be okay.  Fast forward until about an hour after she had been at school, and I received a phone call from the secretary.  She told me that Lindsay’s seizures were lasting longer, and the nurse had already administered her emergency medicine.  I knew this meant that this time her seizure had lasted for at least five minutes.  They had already called the ambulance, and Chip and I rushed to the school.  I don’t even remember how I got into the building.   As soon as I saw her in the clinic, she looked completely unconscious.  I just lost it in front of everyone.  It took a few minutes for them to assure me that she was asleep because of  the medicine, but she appeared okay, otherwise.

Lindsay started to come back to her “normal,” on the way to the hospital, and I answered the same questions about a thousand times between the paramedics, emergency room staff, and eventually the doctors and nurses that treated her while in the hospital.  She had another EEG, this time overnight.  Since it did not “catch” any seizure activity, we moved ahead to changing the dosage of her medicine again and got to go home.

What I am slowly coming to realize is that just when I think we have a new normal figured out, things change again.  Exactly one week after our ambulance ride, I looked in the rear view mirror on the way to school and noticed something was not quite right.  I pulled over on the side of the road, jumped out, and observed that Lindsay was having a different kind of seizure than what I had seen before.  I started videoing it in order to have proof for the doctor and to keep up with how long it lasted.  Talk about feeling completely helpless!  It is so hard to watch your child not be able to control her movements and to not be able to do anything except watch and wait.  Once it was safe to do so, I turned around and went straight back home. I sat in the garage with her, until she woke up about ten minutes later. While I sat there, I had tears of anger and frustration.  Are we ever going to have “normal” day again?

Not long after her scary seizure in the van.
Checking on his sister!

After yet another medicine dosage change, we had a good few days and thought we were finally on the right track.  Then came Tuesday and Wednesday nights, where she had at least four seizures during the night.  It probably goes without saying, but I feel as if I have a constant knot in my stomach almost all day long now.  When we actually do get to sleep, it seems to get interrupted every other hour or so by a seizure.  When I take her to school,  I’m constantly looking at my phone, waiting on the dreaded phone call.  I decided to call Lindsay’s doctor again to see if there were any other options at this point. In the meantime, (and ironically while finally working on this post) I got a call from school that she’d had another seizure there.  (Thursdays aren’t my favorite days lately.)   Now, we have added an additional medicine and hope we might finally see some relief.

Sneaking selfies in church!

In the midst of all of this chaos, I know I am not alone.  Some days, having a nonverbal child who just so happens to now have scary seizures can feel like the loneliest place in the world.  Worrying because you’re aware that everyone at school is probably now afraid to work with her isn’t the best feeling. I’d be lying if I said that I handle it well even some of the time. I’ve spent so much time lately begging God to just make the seizures stop. Please just make this one part of her life easy.  What I do know is that when I’m wide awake in the middle of the night, He is, too. When I’m sick at my stomach with worry, He’s there, too.  I’ve learned that when I’m completely out of control and have no choice but to “let go,” He’s still completely in control. He wants us to hold on only to Him.

My “Type A” self has had to realize that maybe the laundry doesn’t all get folded and put away immediately, and the house doesn’t have to be perfect.   It’s okay if my kids aren’t involved in every possible extracurricular activity.  I’m allowed to just say, “no,” sometimes.  I am a work in progress of learning to not be so hard on myself and letting myself just sit and do nothing for a few minutes sometimes.  Every minute of every day does not have to be filled with something!  Most importantly, when it feels like everything I once clung to so tightly isn’t quite as important anymore, I see more clearly the things that really matter.  Lindsay is pure joy, and she radiates that joy wherever she goes!  She has a better attitude than I do, and I learn so much from her and her brothers every day. They teach me to hold on to what matters.

Until next time….

Laura

Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge him, and he will make straight your paths.  (Proverbs 3:5-6)

The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid?  (Psalm 27:1)

My soul clings to You; Your right hand upholds me. (Psalm 63:8)

9 thoughts on “Holding on and Letting Go”

  1. Laura, I know exactly how you feel dealing with awful seizures. Even though my Ryan is 41 years old now, he still struggles with seizures and what he calls “sinking spells”. Our lives would be so much better if seizures weren’t in the picture! It’s “high alert” at all times!!
    Praying hard that sweet Lindsay’s seizures will be under control soon!

  2. Querida Laura
    Gracias por compartir toda esta travesía que usted y su niña preciosa han tenido que pasar déjeme expresar mi profundo respeto y admiración hacia ustedes como madre e hija .
    En nuestro hogar y nuestra Conregregacion Lindsey esta presente en nuestras peticiones al Señor y su familia también. Seguiremos orando para que la salud de ella este mejor y que la presencia de Dios calme su corazón y le fortalezca en esta ardua labor que sus ángeles les abrazen y cuiden de su niña
    Les amamos en el Señor
    Bendiciones
    Mayra Flores

  3. I still love and think of Lindsay often. I’m praying for you, Lindsay, and your whole family. I know God is with you. Hug Lindsay for me and tell her that I love her always

    1. Laura ,you are truly the strongest person i know, a wonderful mom to your family Mrs Lela talked of you to me so very often how proud of you she was ,and loved you so,but her whole family.❣Just reading your post flooded my heart with so many memories of our talks of you and Lindsay, her prayer request for you, Chip and the boys,i know in my heart she’s not far away. I think of the family every day because passing their house every day i still pray and wonder how in the world you must make it without her .there are times in my room at work that a memory of her will fill my heart with sadness, joy and hope for the day we will see her again. I didnt mean to go on and on ,but all you tounched my life in one way or another znd i am so grateful & blessed because of it .may all of you be strengthened by Gods precious Love Joy & Peace❣

  4. Dear Laura
    Several years ago when I had you in my class, It didn’t take long for me to recognize that you were indeed a very unique and beautiful young lady both inside and out. Today and each time that I read your heartfelt posts, I know without a doubt that you are one of God’s most special Christ like examples on this earth! I am deeply touched by your faith, wisdom, courage, and strength. How blessed your children, husband, family, and the Church are to have you in their midst. How tremendously blessed this broken world is to have a “Laura” who has shown the rest of us the true meaning of endless sacrificial love! Your determined spirit to press forward regardless of your never ending trials teaches the real meaning of Hope and to be humbly grateful for even the momentary blessings. Your remarkable strength, courage, and faith are exceedingly beyond description of these words that most of us can’t begin to fully grasp. Both you and Lindsay are truly a mother/daughter inspirational gift rolled into one from Heaven! My heart breaks when I read your posts and I am humbled by your tireless devotion to your family and our Lord. I especially pray the Great Almighty will use His miraculous power to immediately cease all of Lindsay’s seizures and give your family back the norm in which you had become so graciously content. May our Heavenly Father wrap His loving arms around you and your precious family to comfort and heal in His most compassionate manner. Love you! Mrs Pruitt

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