I love movies that thrill you and take you on a ride. Not scary, gore-soaked flicks, but stories where a disaster looms and someone has two hours to save the world. It can be science fiction, like an alien invasion, or a spy story like Mission: Impossible.
The typical thriller has one character who predicts the disaster. He or she is thought to be overreacting as they try to spread their message of impending doom to anyone who will listen.
This is the character who usually ends up in a fatal car accident under suspicious circumstances or locked away in a mental institution. At the end of the movie the lone voice of reason is deemed a hero, but it’s usually too late for the poor soul.
It’s probably not the best character to identify with.
I’m not saying I always feel like this, but each time we get to another crisis with our daughter, Lizzy, I feel like the crazy person in the movie who knows the aliens are taking over the world and is trying to warn the others.
Ever since Lizzy was six weeks old, I knew something was wrong.
I was holding her in my arms one morning, cooing and singing to her when I realized she wasn’t looking at me.
My heart sank, and a feeling of pure panic took hold of me. My legs felt weak, my chest ached, and my body knew this was serious.
I’ll always be grateful to my husband for trusting me completely and never once doubting my instinct. I most likely would have ended up howling at the moon had it not been for Joe.
I drove many people crazy as I would discuss my fears that something was wrong with our daughter. I was often told to relax and enjoy my children. And I really wanted to, but something just felt wrong.
We started to look for answers quickly. There were times when it looked like we might be headed in the right direction, but then Lizzy’s progress would stall, or a new symptom would emerge, and we would be right back where we started.
It didn’t help that Lizzy dumbfounded every specialist, therapist, and teacher we met.
Almost all the visits started the same way. Lizzy would smile and be her adorable self and charm the professional we were seeing. I would start to relax and think maybe I was just blowing things out of proportion.
The therapists and teachers would declare that she only needed a little push to speak. The doctors would look at me as if I was just another over-protective mother.
Then, in the case of almost every specialist we took Lizzy to, there would come a point in the exam when we would see the doctor’s face change.
Something did not make sense. Further tests would be required just to rule things out. I would leave the office nervous, but the doctor would usually reassure me that she was probably just fine.
Then would come the calls. Scary diagnoses would be mentioned. More tests. I would be a wreck. My worst fears were being realized.
Then the tests would come back negative, and we would start the ride all over again.
My friends, family, and Lizzy’s teachers and therapists would tell me I was doing everything humanly possible.
But something was wrong with my child, and I wouldn’t rest until I could get an answer. I could keep myself up trying to think of possible causes.
I was also losing sleep because Lizzy rarely fell asleep before 11:00 p.m. or midnight and then would wake up two or three hours later screaming so loudly you would swear someone was torturing her. She was never quite awake, and then in mid glass-shattering scream, she would just fall back into a deep sleep.
When the “behavior seizures” started to happen during the day, I really thought we were going to need adjoining rooms in an asylum. Of course, people started to see what I meant and I didn’t look so crazy after all.
This was of little consolation.
For the last two years things have been pretty quiet for Lizzy.We found a wonderful doctor who has been treating her for a bi-polar disorder that seems to match some of her more difficult behavioral symptoms.
The medicines Lizzy takes allows her and us as a family to have a more normal existence. We’ve been able to go out for dinner or other outings without fear of a Lizzy explosion.
But then about six weeks ago, she started with this awful cough. The doctors weren’t able to confirm it as a case of Whooping Cough, in part because of the difficulty and unreliability of the test. But all her symptoms pointed to this diagnosis.
Her cough was so horrible that it would cause my little girl to throw up to the point where her face had little bruises.
Almost as bad, old behaviors that had been dormant for most of the past two years have returned. Her wild manic behavior is made worse because Lizzy is older and stronger.
I got a note the other day from her teacher that Lizzy insisted that she was Disney’s Little Mermaid, Ariel, and would not answer to her own name.
It’s at least a small win whenever Lizzy is able to voice what she feels. I have to admit I laughed at that one. But I’m not ready for the notes to come home again. I’ve enjoyed and gotten used to the “Lizzy had a great day” notes in her communication notebook.
New physical symptoms have come along with the cough and vomiting as well. Lizzy had has started to break out in an odd rash sometimes. It comes and goes very quickly, but it just doesn’t seem right to me.
Because Lizzy’s overall syndrome lacks a firm diagnosis, we have no template to follow.
We have five MRIs that show significant brain damage, and bones and organs that are growing faster than her age. Yet her hormones and other vitals are normal, and none of the specialists we’ve seen can say with any certainty what to do.
How do I help my beautiful enigma when some of the best doctors in the country don’t know how? I’m just a mom.
I have to confess that in the past when we have found ourselves in this situation, I’ve been out of control. I’ve alienated friends and family. I’ve eaten my weight in chocolate. And we always end up right where we started. No diagnosis.
I’d rather not take another ride on the same roller coaster.
I have a choice. I can handle this crisis like I have the others only to get a similar result or I can change the pattern. I could learn to live in the mess, the uncertainty, even the fear.
Perhaps if I stop fighting the chaos, some normalcy will take hold. Acceptance has always brought me peace, but I have refused to accept that this is the hand that has been dealt my daughter and family. I have struggled and searched for a magic cure or answer when the truth is, none may exist.
It’s a bitter pill to swallow, but neither Ethan Hunt (Tom Cruise) nor Jason Bourne (Matt Damon) will burst into my house and save my daughter. But the truth is, I can. Not with a heroic Hollywood happy ending, but in the day-to-day wins of tending to and nurturing a special little girl with some very special needs.
I’m going to have to take this road truly one day at a time and enjoy the road, the ride. In the end it is all I really have. That, and my beautiful enigma named Lizzy.
one mom's attempt to find humor in the chaos
Much thanks to Joseph Radigan, who besides being a great husband and father, also uses his talents to gently and ever so tactfully edit my blog. Joe is a business editor at Thomson Reuters in NY.
You get me every time. My heart is breaking. I have discovered that this whooping cough is anecdotally common among brain injured kids. It tends to happen when the kid is struggling to process something new or is stressed out, and it can be considered a form of hyperventilation. With
Jordan, I would get her in a quiet place–physically or mentally– and calm her down. I would also ask her teachers if she’d been introduced to anything knew that day. It took a few months, but we found her the relief she needed by using relaxation techniques and asking teachers to send home the new subject ahead of time so I could introduce it o Jordan at home. Much less stressful for her.
I’m glad we’ve found one another, Kathy.
*new* that day. You knew what I meant, right? Typos.
Thank you so much for your kind words and support! It means so much to me to meet another mom who is going through so many of the same things as we are! Thank you for the info on the cough, I will look into it and try some of your suggestions. Thanks again, I’m glad we found each other too!!
kathy, you always leave me so inspired at your courage, dedication, strength and compassion. i am so sorry to hear of all the pain lizzy and you are going through. i can’t imagine the frustration and hurt that goes along with it all. you’re right…each day YOU are her hero. she is blessed to have such an amazing mother. sending positive thoughts and many prayers your way!
xoxo
maria <3
My goodness Kathy, you must be going through some very tough times right now. My blessings and prayers to you and Lizzy. I hope that she gets better from that dreadful cough and it doesn’t get worse. Hopefully, the teacher can be understanding to her needs and she’s able to continue to be the little girl that you want her to be.
Kathy,
You are so brave and so strong. I am inspired by your commitment and dedication to getting Lizzy all the best help. I wish that you didn’t isolate yourself and try to go through it alone! I know there are family and friends who would hold your hand and walk this journey with you. Let them love on you and help you. Lean on others if you need to! I can’t begin to imagine how it must be for you, every day, not knowing how Lizzy will feel.
Your family is in my prayers.
Blessings,
~Erin
Kathy, I’m so sorry you and your beautiful Lizzy are going through this. You are an amazingly strong, smart, and loving mother. Hoping your Little Mermaid is feeling better soon. Hugs for you. Sending prayers.
No wonder you love those movies — two hours and everything is resolved! Not having clarity or a clear road map must be so challenging, but I love your movement towards accepting those parts of the situation that you cannot change. Also, your powerful love for Lizzy comes through so beautifully in the piece, as does the sweetness of her personality!
This is a beautiful post. I hope and pray that Lizzy starts to feel better. It must be so tough not knowing what causes the behavior or how to directly treat it. But Mom always has a special touch so I am sure you are helping her more than you can ever imagine. Unfortunately, there are things in life we can not change but how we handle the situation and our attitude came make such a big difference. You are an inspiration to many.
Thank you so much friends! This was a tough one to write and I wasn’t sure that I even should, but my husband and I both felt that Lizzy’s story is an important one for us to tell. Thank you all so much for your wonderful and loving comments. The support I get here means more than you will ever know! Much love!
Kathy
Wow, Kathy…. I had no idea you guys were enduring such huge challenges…. I pray for wisdom from doctors for your precious daughter… and a peace that surpasses all understanding – even in the midst of so much confusion. Thanks for sharing your story…. I am deeply touched.
I pray that you find a doctor that will know what Lizzy is dealing with. It took them 2.5 years to figure out what I have and I know how frustrating that was for me I can’t imagine when you have to deal with your child in that situation. I just shared your story. Love you. Lisa from Voiceboks!
Oh Kathy, my heart is breaking for you and that little girl who has no control over what is happening to her. She is very lucky to have you on her side. You can, and always will be her saviour, and one day you will both come out the victors! *hugs*
Yes, you have a choice. Always. Now that you have realized the choice you took, life will be easier to live. 🙂 Whatever circumstances that come our way will either make us stronger or weaker. Have a good day! 🙂
Thank you all so much!! She had a tough morning, but her teacher said she had a much better day today, so I’m hoping the increase in her meds have helped!! She was a beautiful fifties girl, along with my great boys who were both Elvis, 50’s version!! Thanks again!! Much love!!
Kathy,
I’m so glad that you wrote this and shared it with us. Why are we here? To support, love, and listen. Hopefully our stories inspire, motivate and comfort one another, and this one is no exception. You are one tough lady and by looking at these comments, you’ve got some lovely ladies who have yours and Lizzy’s backs… and fronts! xoxo
Kathy, I’m sorry to just now be getting an opportunity to read this post. Now I’m finding myself without words. Well…I have a few coming to mind. 🙂
I can’t even imagine the sense of anxiety you must feel over Lizzy’s health and well-being. I’m sure you are heart-broken, maybe even a little angry and confused over these horrible circumstances.
Two Bible verses come to mind:
For God has not given us a spirit of fear, but of power and of love and of a sound mind. ~2 Timothy 1:7
“Call to Me, and I will answer you, and show you great and mighty things, which you do not know.” ~Jeremiah 33:3
I’m praying for you and your family, dear friend. And I agree with Erin. You don’t have to go through this alone.
Love you,
Rosann
wow. This is a striking post. You are the perfect example of what a mom is. Fighting for her child – supporting her child. Loving her child. Trusting her own instincts.
I laughed at the Ariel moment. Good for her. let her be Ariel. That is precious.
I hope you have a wonderful day.
You are such a strong mother and over all person to go through what you’re going through. I won’t say I know or can even begin to understand your situation but I will continually pray that you will be given the strength, patience, and courage you need to get through each and every day…you’re daughter is precious and very blessed to have a mother like you.
I love coming here and seeing your lovely comments! Thank you for you all for your thoughts and prayers, they are so appreciated!!! Much love to you all!
I can so comprehend everything you have written. My son has quadrapelegic Cerebral Palsy and was diagnosed at 11 months after months of me arguing that something was not right with the Health Visitors. Everyday is a new and exciting but challenging day and the condition has raised so many issues already that even when you have a diagnosis you do not foresee or know will come about. I feel lucky to have a formal diagnosis as it makes form filling and the paperwork side of things for help easier, but I know many people at my sons school who are still struggling to get answers to their questions. Somedays are good and I think, this is our life and we deal with it well, other days I go to bed at night and feel such pain at the frustration he feels, and the discomfort he puts up with on a daily basis I feel like the most helpless and useless mother in the world.
I look forward to keeping posted with your blog, I am following now after seeing your comment on SAHM group on Bloggy Moms. I try and keep my head clear by blogging too and have started a feature on my blog called ‘The Disability Diaries (The Life of J1)’to try and raise awareness of how days are for someone with disabilities and the families that care for them as I think alot of my friends and family try and comprehend but don’t really understand. It makes me feel better somedays anyway, to have made the effort to voice what bumps around my mind!
Anyway, I have blustered on for long enough!
Take care
Lynsey (http://lynseythemotherduck.blogspot.com)
You are just incredible and Lizzy is soo lucky to have a mom who is so dedicated to her! I truly can’t imagine how hard her journey has been, esppecially for all of you, but I can say, I’m hopeful that Lizzy will have many good days in the future. And the part about being Ariel made me smile 🙂
Kathy, This is an amazing post, and you are an amazing woman! Thank you for sharing! Hugs and Prayers to you and your family!
Carla @ Whole Child Creative Curriculum
Wow, what an incredibly post.
Lizzy is so lucky to have you as a Mom.
Oh, that is so awful not knowing what is going on! I’m so sorry you are going through this, and I hope you can get some answers soon.
Hugs and hugs,
Courtney:)
You are a great Mom! Lizzy is so blessed to have you love and care for her. You are ALL in my prayers.
Found your blog from twitter. Wow, this road sounds a bit familiar. My oldest son has severe special needs (seizures, legally deaf-blind, among other challenges), and he never got a diagnosis. It was a LOT of unanswered questions and confusion over the first several years of his life. He is 17 now.
Through your most difficult times remember that special kids need special moms! 🙂 And know you’re not alone. Glad I found your blog.
It sounds like you and your daughter are both strong and amazing. I can’t imagine how hard it must be to handle the situation without getting real, firm answers. I wish the best for your family and be sure to reach out when you need help- being a caregiver is stressful too!
The way you pour the truth of your heart out with humor and grace is beautiful, as is your attitude. I pray the sufficiency of God will sustain your entire family. That peace in knowing the God who understands every atom of Lizzie’s body will overshadow your days.
Kathy, I’m inspired at your courage and perseverance, and my heart goes out to you and your little enigma. The only solution I have is prayer, so I’m praying that the day-to-day living is more normal more often than not.
It also sounds like Lizzy is a fighter, and she has the best mom by her side to help in the battle.
Blessings to all.
Kathy, I am so sorry to hear that things have taken a turn with Lizzy. Even more difficult is the fact that you are uncertain what the right diagnosis is. I admire your determination to do whatever it takes for your children. It’s not an easy road, and at times I’m sure it tries your sanity, but it’s commendable nonetheless. I hope you are able to discover some methods that work for both you and Lizzy as well as the rest of your family. I will be thinking about and praying for you!
It’s so hard the not knowing, the beautiful enigma…I hope you can find relief. I think about you and your family so often Kathy, I really think being here may find you some answers. Thank you for sharing!
Found you again after such a long break. LOVE you and your beautiful little girl.
Oh, Kathy, I don’t know how I missed this post. I’m sending you hugs and prayers. You are a wonderful mother and I have faith that you will find your way through. Not knowing is the hardest part.
I hope that her behavior is getting better and that she is feeling better.
You are in my thoughts always.
Kathy My Dear,
I feel your frustration, grief, determination, and reticent relinquishment of it all. The night time screams and subsequent daytime raging behaviors in my son were extraordinarily difficult, but I feel fortunate that (for the moment) his mood stabalizing medicine assists in giving him the means to adjust to day to day challenges much more than without it. On the other hand no one seems to be able to tell us just what is really going on with him. We are also trying to take it one day and often one moment at a time.
Melody~
Sorry I have been so delayed in reading your posts. What a heartbreak…I hope she is feeling better than when this was posted. MariaXXOO