I knew

I knew the day would come.  I thought about it numerous times during her first year of life.  I wondered when exactly the moment would happen, how it would occur, the situation I would find myself in.  I never had a clear image of what exactly would transpire, but I knew after so many encounters that one-day things would be vastly different. I knew there would come a day when the small talk surrounding a run in encounter with a "baby" in a stroller would yield a different response than "how cute", "oh, is she 1?", "what's her name?", "she is so pretty", "what pretty eyes", and/or some other similar but positive and smile exchanging encounter.  I wondered at what point it would occur, always fearful of the day it would happen, but then of course forgetting about the potential on the day that it did.

After all the years of hesitant exchanges standing next to her stroller, eager to just smile along and chuckle at whatever praising remark was made, the one time that I forgot it could occur, is of course when it did.  I knew she wouldn't be a baby forever, I knew she wouldn't be tiny forever, G-d knows she has enough tubes and medical interventions erasing the Failure to Thrive diagnosis as we speak.  I was never naive enough to think that she would always get positive head turns, but in the end, maybe I was.  I knew once she was bigger she would get noticed for her hand stereotypies and her abnormal flexibility.  I knew people would start to realize she wasn't a baby, but in the majority of ways, she really still is, and ironically the phrase "look at the pretty baby" that used to make me grit my teeth because she wasn't a baby, I wish would return.

I knew her growing up would eventually happen, but I didn't expect for the day to occur while walking down 68th Street in New York City.  I knew one day someone would act in a way that hurt me to my core, but I didn't expect it to be a man walking a cute Yorkie named PJ, who (I can only assume) had zero intention to break a mother's heart while he was out walking his friendly dog.  I knew one day it would be completely obvious that the little girl in the stroller with splatter colored framed glasses and a customized pacifier clip was not actually a baby, but I didn't expect the silence after responding to the question about her age to be so deafening and feel like an eternity was passing by.  I knew one day there would be no words to fill the awkwardness that filled the air.  Yet the thing about preparing for the future with a diagnosis like CDKL5 is that there really is no way you can, because no matter how many dress rehearsals you have; when the curtains lift and you find yourself center stage, it is never exactly how you anticipated it to occur.

Comparisons

It happens all the time after I tell someone about Sonzee.  The innocent follow up question is always "what do the doctors say for the long term?”  This usually results in me telling them while the spectrum of her disorder varies, most children with her disorder do not walk, talk, or feed themselves on their own.  I always state we will do whatever we can for her, we are not saying never, but her disorder is limiting, in all ways.  This is then followed by the seemingly innocent comparison.  The one where the person is trying to maybe instill some hope into my life by saying that their child, a friend’s child, or a child of a second cousin twice removed has epilepsy and they are graduating from Yale or some other Ivy League college.  (To be honest, Ivy League schools are not really on my wish list for any of my children, but I digress).

While the statement seems "benign", what I would love people to know is that the comparison to your child, your friend's child, or your cousin's child twice removed, is actually unfair.  CDKL5 and many genetic disorders are limiting in the fact that they are genetic.  When a gene in a body is incomplete, missing, or has an error it has a catastrophic impact on all areas of development.  There is no medication that can fix it; there is no "system reboot" that can be completed.  There is absolutely nothing that can be done to actually make the bodywork normally.  Symptoms can be treated to an extent, maybe Sonya's seizures will one day be completely under control, but even if that happens, she will always have an abnormal mutation on her CDKL5 gene.  This means that the comparison might as well be apples to oranges.

We can spend thousands of dollars on therapies, we can place her in every therapy the world has to offer, and they will help her, but they will not ever make her act like or be a typical child.  When I am told that "doctors can be wrong", yes they can be, but not with CDKL5.  I wish people did not feel the need to create small talk by saying "you never know what might happen".  You are absolutely correct, I do not, however unless it involves a vial of CDKL5 capable of replacing the frameshift mutation on Sonzee's, than I am 99% certain that attending (an Ivy League) college will not be in her cards (but she will be happy to accept an honorary degree from one).

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Advice

I have been traveling on a plane with one or more of my kids since my oldest was 3.5 months old.  I can tell you in the little over six years of doing this; I have only experienced two negative encounters.  Both times were due to a crying baby, yet the reasons behind the tears were drastically different.  Regardless, both of these situations resulted in this momma bear in tears as well, and just like my babies, the reasons were drastically different.

On Friday afternoon, Sonzee and I boarded a plane in Burbank, California.  We were flying Southwest airlines and I chose the first open window seat when we got on the plane.  When I travel with more than one child, I tend to go to the furthest available seat, usually the last row so we disturb the fewest amounts of people.  After I collapsed the stroller outside the plane I grabbed my purse, Sonzee's emergency bag, Sonzee's feeding tube backpack, and of course the bear herself.  She was not so pleased with me for removing her from her stroller, so of course she was protesting as we entered the plane, thus the reason behind me grabbing the first available window seat.

There was a woman sitting in the aisle seat and she had her purse on the middle seat, I later learned through conversation that she travels back and forth weekly to Burbank from Phoenix, so the experienced flyer that she was, she marked the middle seat as taken until the doors closed.  Sonzee quieted down shortly after she was in my lap and facing outward.  She is not a baby who prefers to be held, so I took my deep breath and prayed that she would cooperate for the short hour-long flight, and be kind to us all.  We took off shortly after boarding the plane and with some slight readjustments, little bear was asleep, and I was as relaxed as I could be while flying 36,000 feet in the air.

The flight went by quickly, and I was thinking in my head (it was clearly a premature celebration) how Sonzee was going to get at least a high silver or low gold rating on the "star chart" I refer to when flying with the kids.  The pilot made his announcement for our decent, and shortly after I noticed Sonzee's body was doing random jolts.  It was more like a startle reflex, so I just rubbed her head and wishfully willed her back to sleep.  Within 5 minutes Sonzee let out the most horrific screams.  I of course did all I could to get her to calm down (despite what others might suspect because the majority of parents holding a baby in their arms do not enjoy them screaming at the top of their lungs directly into their ears in addition to the fact that they are mortified of the situation).

We (finally) landed and it surely felt like the longest 7-10 minutes of my life.  I honestly could not wait to get off the plane.  As I stood up, gathered all of our belongings, and situated the bear in the best possible position so she might stop screaming, a man a row ahead of us turned to me and said, “You are doing a great job mom”.  I have to admit there was a part of me on the inside that was jumping for joy, while the other part still just wanted to get out of the plane and put Sonzee in her stroller where I knew she would finally calm down.  I ran off the plane, and we were waiting for the stroller, Sonzee of course still screaming as loud as she could.  The pilot clearly reading the distress on my face went down himself to grab it for me.  As I waited, I was bouncing little bear, shushing into her ear, kissing her head, praying she would calm down, and holding back the tears that were filling my eyes. 

That is when it happened.  The tall well-put together businessman with his little black designer rolling bag approaches me.  He walks right up to me as if we are friends, as if I somehow communicated to him that now would be the most perfect time for him to share his thoughts.  He pulls up the bag and stands it up straight.  He looks over at me and he says, “I have two children and I flew with them all the time when they were younger, here’s some advice, it’s her ears, give her a bottle during takeoff and landing.” 

I have to give myself credit, because even though the tears were clearly visible now, I was able to give him a reply that I could only hope would help his future advice giving.  I turned Sonzee so her face would be right in his sight of vision and I said, “Well unfortunately she is intestinal fed and she can’t take a bottle”.  To which he replied, “Oh, sorry, good luck with that”. 

I am unsure which part of his advice hurt me more; was it is the fact that I wish it was that simple, that I could simply give her a bottle and she would calm down?  Maybe it is the fact that possibly it was not her ears that were hurting, but rather those startles might have been mini spasms and that was the reason she was screaming.  Could it be that she was simply having a CDKL5 crying/screaming spell and even if she did take food by mouth, nothing would have helped her?  Maybe, it was because he was so far back on the plane he would not have known if I had even tried to give her a bottle in the first place!

Regardless of his attempt to give what he felt was appropriate advice, I hope what I said to him resonated just a smidge.  Maybe the next time he feels he should be sharing his “I was the best dad ever advice”, he might pay a little more attention to his surroundings and take a second to realize that not every situation is cookie cutter, and what might have worked for him, won’t work for everyone else.  As for the man who told me I was doing a great job, you my friend are one amazing individual!

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Words

On Friday while Sonya's brother was at camp, the girls and I went grocery shopping.  I had Sonya in the baby ktan and her sisters were in the cozy coupe shopping cart.  We made it a solid 15 minutes before Sonya started screaming and the girls began invading each other's territories with their limbs causing one or both to whine continuously until I threatened to remove one and make her walk.

By the time I made it to the checkout counter I had already lost what little patience I began with and had dialed Sam twice (he luckily did not answer) to tell him with screaming baby in full force, this is the exact reason I do not like to go grocery shopping.  I pushed my cart into the line behind another mom who's children were also in the cozy coupe.  She of course turned around and gave me a pity smile (yes Sonya was still screaming), saw the girls, and matter of factly said "oh do you have your hands full"..."I remember those days".  

I did my typical smirk and shrug response to that statement, but gave Sonya a quick kiss on the head and thought to myself "if only you knew".  Normally little statements like these do not bother me, but lately when someone says something  "innocent" it holds a deeper meaning.  Truth be told if I had only had Sonya with me she wouldn't have said it.  Does that mean a mom with one child doesn't have her hands full?  They are just words, just a social nicety. 

I know this woman meant nothing by her words other than to acknowlege "hey, we have all been there, we've all had the screaming kiddo and this too shall pass".  Similar to the kind grandma and older man that Sam and I encountered on two separate occasions stating that we should enjoy the moments now because in a blink the kids will be 18 and moving out of the house...if only they knew.

Having Sonya has definitely made me more aware of others in regards to giving that extra thought before I speak.  It is not to say I walk on eggshells before I say something, but I try and be extra sensitive to others situations.  Nothing stings more than asking a mom when she'll have more kids when she is secretly battling secondary infertility.  Or asking a mom how many kids she has when she has just buried one.  These are both examples where unless you know these people on another level you wouldn't be privy to their struggles.  

Sam and I like to pull the positives, we like to embrace the good times.  We like to "brag" about Sonya's accomplishments because she is doing amazing.   I don't like to write about her seizure activity or what she is not able to do.  I do not fault those who say the "innocent" phrases, I know looking at Sonya gives a false sense of "normal".  I guess that's what makes it sting more.  The assumption that "maybe the doctors got it wrong" or "maybe it won't be as bad as you think".  But, no they didn't, and yes it will be.