I am tired, spent, exhausted and my body hurts in places that can’t be reached by massage or rest. Larkin has been very sick since the Tuesday prior to Thanksgiving. I have posted most of the gory details and we left for Florida after her doctors said it was ok to travel with her. We spent a week at our home in Naples with 80-degree weather, sunshine, some pool time, and her mostly laying on me sick.
My in-laws live around the corner and my sister in law and her family were there too. Thank God, because it gave me the occasional break so I didn’t lose my mind in total. Chase took a friend that I really like so the boys had a lot of fun. They made friends at the clubhouse so their time was spent between houses, basketball, and pool.
Christmas eve we flew home. I have mentioned in the past that I was raised in a religion that does not celebrate holidays, birthdays, or anything secular that remotely sounds like fun and has pagan influences. I am willing to take bets that I was the only child in my class growing up that knew what pagan meant. Christmas trees, gifts, decorations, the Easter bunny, and eggs are all items that I viewed through a perception of evil and idolatry. Santa – well he may as well have been Satan.
If you were raised with trees, Santa and gifts, know that there are those of us who have no knowledge of the love you have for this time of year. I don’t have cherished childhood moments of opening presents and believing in the old fat guy. While I do enjoy the lights, displays and music, I don’t have the passionate feeling those who grew up with the holiday traditions do.
Moreover, I am ok with that. Looking back, I suppose it provided me with the coping skills necessary to walk my current path. I was always the different kid. I had to leave school if there was any type of celebration, I took a lot of teasing, and kids are bullies in the best of situations – so there you have a perfect recipe for hating life at times but finding the fortitude to move along and make the best of bad situations you can’t change.
I tell you all of the above to get to the meat of my post. I took the week off from the computer only because in order to post I had to go up to the clubhouse and use theirs. I didn’t bring mine and in reality I wanted the forced disconnect. I still had my Crackberry so I stayed in touch with Facebook. However, my mind kept going and my iron smile was in place. All parents who have dealt with illness know that smile. All parents who have a disability in their family know that smile. All parents and families who deal with comments, sweeping generalities, misconceptions and misperceptions, stares of pity, and the seemingly never ending myths about their children, know the smile of which I speak.
The Iron Smile. It has nearly broken my face during this illness and holiday season and the comment that I said sideways to a friend who made a sweeping generalization brought it all crashing down.
Down syndrome is not my life
With an emphasis on MY. Yes DS gave Larkin an extra chromosome, her almond shaped eyes, some of her delays, and the most hated – her ability to grind her teeth so loud that people 3 miles away can hear her. Down syndrome is not my path, walk, life, journey, or what I think about very often.
Seizures are my life
My little girl has been far more damaged because of a predator that we cannot see. Think of the most terrifying electrical storm you have ever seen, add in a tornado and set explosives around it that explode into fireballs. THAT is what a seizure looks like inside the brain.
We give her a tremendous amount of medication. She has come back to us because of it. Illness such as this last one takes a toll on her little body and she can’t fight it the way typical kids or those with the vanilla diagnosis of a disability can. She is terribly weak right now and that is hard to watch. It is draining to our family and I have to walk everyone off the ledge every now and again when they decide to step out and look down. THAT is extremely draining for me. Frankly, everyone needs to sit down, shut up, and let me do my job as her Momologist. Wash laundry, fold, get me food, wash dishes, hold her for a bit, make me laugh, watch me cry from exhaustion, or just hang out. Just don’t make me walk you off the ledge right now.
There are no books on Gross Motor Development for the child with seizures, Language Development for the child with seizures, Potty Training for the child with seizures, I was a good mom until I had a child with seizures, 101 party jokes for the seizure pity party, I drink because you have seizures, Being comfortable with stuffing killer mediation into your child with seizures.
Do you see a pattern? Over Christmas I received 2 emails from 2 different mothers, 2 different coasts, 2 different little girls, but one thing in common – seizures that have debilitated, caused anguish, development is a thing of the past, language gone, smiles and interaction have taken a vacation. I talked with both mothers over the phone because you MUST have the voice. It’s almost as good as a hug and touching. Voice of calm, reason, faith and above all else – HOPE. I talk because I understand their fear and I know they need to connect with someone who UNDERSTANDS. Together we navigate our emotions. Together we vent. Together we get through a holiday where we watch typical kids and those that are higher functioning sing, dance, smile, and interact.
We whisper in shame and anger that we wish our children had heart defects, cancer – something we could FIX. Open them up or choose another poison for their veins that could STOP the demons that stalk our sweet babies. I hate even typing this because it minimizes the fear that parents who are dealing with those issues feel. But as I often say – it is what it is and that is how we all feel. With these 2 mothers I let my guard down slightly and we talked in hushed tones and stunted sentences about death. We know the odds. We know that seizures often win. We know that in the meantime – we will fight with every breath, cell, and fiber of our soul to win. Distance doesn’t mean shit. We can run a marathon with 30lbs of floppy weight in our arms. I see parents with much heavier children running.
When Larkin had her first MRI at 5 months, I prayed so hard for a brain tumor. Seizures are isolating. We feel like we are on another planet, one that is populated but there is great distance between each family. Even among each other, we feel shame because we wish for another type of medical issue. We tend to retreat because the pain, fatigue, anguish, fear, making decisions that no parent should EVER have to make, becomes overwhelming. Planet seizure has it’s own atmosphere and sometimes that makes it hard to breath when we visit others.
I don’t write this to make anyone feel bad, garner sympathy, or fill a need for pity. It is simply an explanation of my iron smile. I want you to understand that my girl fights a good fight every single day just to move her body the way it needs to. My girl is different just like I was all those lonely years of school. I hold her up to you to show what courage looks like. She is my hero. She is a beauty to behold from the inside out. My iron smile slips when my sweet friends grab my girl and squeeze her tight. My iron smile slips when I meet people who understand, love us, and wish from the tips of their toes that they could fix this for us.
My iron smile slides from my lips and is replaced by the total joy of loving a little soul that deserves respect and has changed my heart for the better.
It’s good to be home
Isn’t it funny how you turned out to be the perfect mother for Larkin?
Thinking of you and hoping for a good and peaceful new year for you and your family….
Thank you for update and for teaching us that just when we think we have it bad try walking in someone elses shoes and see if we could manage to even put that iron smile on!!! I hope you at least got a glass of wine that seems to be my medicine at times!!! Hang in there Amy and thinking of you all!!!! Hugs from the Bates family
I hear you sister! Amen that you can tell your truth, even if it is not the pretty picture that people want to imagine. There is a reason all of us seizure mom’s call them the dreaded “S’s”! Because it is beyond your worst nightmare. I think of you and your sweet baby girl often and know you are giving her the best you can! Big hugs to you all!
Cara and Lindsay
What an amazing voice you are! Your calm voice IS reassuring and comforting. You are an incredible woman, not because of the challenges you face that life brings you on a daily basis, but because of the grace with which you handle them.
Not a day goes by that you aren’t in my thoughts!
I have never once thought that I’d like to “fix” it for you….there is a grand plan and God has picked you because you make a difference! And Larkin is indeed an angel, giving smiles to every single person that is fortunate enough to see her pictures, or hold her, or just hear about her.
Have a wonderful New Year. You are in my prayers….always!
I think we all have our version of that ‘iron smile’, even though our journeys may not be the same…Your family and sweet miss are always in our thoughts and prayers. I cheer at every milestone your sweetheart achieves and cry with every setback. I can’t help but to think positively about her future-dreaded ‘S’s’ be damned! Larkin (as well as her mom!) are an inspiration to us all and very much loved, just as she is…welcome home 🙂
I enjoy reading your blog so much. Though I don’t always get a chance to leave comments, I read faithfully. I love you for your honesty and your insight. I have my version of the “Iron Smile” that you speak of and I know it well. I love little Larkin and you as well! Let me tell you, I miss chatting with you! Love and hugs!!!
Amy I want to wish you and your family a very blessed coming of the new year!!! There will be so much to look forward to with the deveopment of Larkin’s place. I look forward to each post that you put up because you have a way of showing us who feel lost at times that we are not alone and give us connection to new people who have that similar feeling. You are such a giving person of yourself and are down to earth as real as it gets! I love that about you and most of all you’re a teacher to most of us who are afraid to let other’s see inside of our hearts or past that “Iron Smile”. Wishing you and your family the best of what’s to come for 2009!!! (((((hugs)))) from the Bates family!
As you well know, my childhood was filled with seizure hell in an attempt to survive my sister’s childhood siezure wrath.
I can’t tell you the number of hospitalizations we endured, the family plans and anticipated outings that were inevitably disrupted by seizure episodes that took weeks, or sometimes months, for my poor sister to recover from.
Like Larkin, my sister too has developmental disabilities, but the seizures, and the insane drugs it takes to control them, are the most debilitating of them all.
But here we stand 26 years after my sister’s birth, and though it still feels like we’ve all been through hell and back, she is still here with us surviving, thriving, and teaching us everyday.
It has been a long road . . . but we’re all stronger for the travels, and my hope and prayer is that Larkin too emerges from seizure hell to a more stable place someday soon.
Please know that as much as you fear the worst, the best is possible, and the best is what I hope for and pray for you all.
Brain tumors are evil and destructive. They come with paralysis, confusion, weakness, memory loss, loss of self, dementia, loss of vision, terrible pain, neuro blips, and threatening seizures and most often death. They are not always “fixable” and treatment, if it doesn’t kill you, is a pain-filled, horrible journey. As some BT are operable, most all victims are left with serious physical and emotional trauma and BT recurrences. Surviving victims of BT and their loved ones live in a cloud of constant monitoring and “what if’s and “what was that?”.
We all have a cross to bear and an iron smile, at times, to wear and our path is set before us as is. With that iron smile, God has lined it with wonders and graces that, sometimes, we are the only ones that notice. You and yours carry your cross in a mighty manner and your grace, patience, knowledge and love for Larkin and others like her, has without a doubt taken weight from her fragile body. I pray for Larkin and your family often and I also pray against BT and for those who are fighting against them. I pray for mercy for Larkin and I have hope for 2009!
That was so rightly put,it brought tears to my eyes. It is so ironic how the world works because my husband and i have wished anything on Hunter except these seizures. Anything else would be easier on him and maybe give him some quality of life. He is so a fighter and I have been blessed to be his mom. I completely understand.