Return to "normal"

As of Friday, Arizona's "stay at home" orders will be lifted, and just like that the state will be returning to normal.  Whatever that new normal is anyway.  I am on the ledge with my feelings, I have been from the very beginning.  On the one hand, the entire 4 years 11 months and 23 days of Sonzee's life we spent in a sort of quarantine.  We were extra diligent about who we allowed in the house and where we went.  Anyone close to us was aware that our restrictions followed Pheonix Children's Hospital, and that meant between December and May you weren't allowed in our house and we weren't going into yours.  We did our best to protect her, and if I push any potential "mom guilt" aside, we did a pretty damn good job of it.  Pre-covid19 times were for us, spent as if the virus was around because Sonzee was around, and now, now we are told to return to normal, yet I don't have the slightest idea what that even means because this was our normal.

Today, for the first time in 5 years we are packing up the car with four children for a weekend getaway that we booked yesterday.  A spontaneous trip to the cooler weather for us to go to be in a different location, to continue to do what is familiar to us yet completely unknown because there was no need for preparation.  There are no deliveries to work around, no fear of being 3-4 hours away from the nearest children's hospital, and no nurses to convince that they too need a weekend getaway.  There are no pressures to return to the normalcy of stores, sports, activities, or even socialization because we are going to hide away in the woods, and seclude ourselves even further.  The only decisions I anticipate to make this weekend are whether to sit outdoors or go for a walk.

I can't lie, the entire quarantine period has been a significant relief for us not having to figure out what our new normal is going to look like.  The fear of having to start to face that reality as soon as Friday is making me feel completely suffocated.  I don't know what is best for our family because we aren't the same family we once were.  The horribly sad reality is that we don't have to make all of the sacrifices we once used to make (without even thinking twice), yet that brings on its own form of heaviness.  I don't know what normal is, or what it is supposed to be.  I don't know if I am even ready for any new anything, much less a normal that doesn't revolve around a medically complex child.  What I do know, is that since I am not ready to deal with whatever normal might be, we are going to head over to Sonzee, tell her I will be back to see her Monday and let her know that she can come to join us in 20-degree cooler weather.  All the while I am going to be reminding myself that this weekend getaway is not going to give me any concrete answers or feelings of normalcy no matter how much I would love to fool myself into thinking that it could or would.

A "new year"

This past Monday and Tuesday we celebrated Rosh Hashana (the Jewish New Year).  On Monday morning Sam and I debated whether we would be bringing Sonzee to the synagogue in order to hear the shofar (blowing of the ram's horn).  In general I am usually the one that is in favor of bringing her along to family events, while Sam tends to play devils advocate and suggest that Sonzee would much rather not walk .3 tenths of a mile in 105 degrees and sit in a loudish room, "stuck in her chair".  On most occasions she will be in pain, just have had a seizure, or present in some other manner that will make me side with Sam, but on Monday morning, I simply did not care.

Her first seizure of the morning was at 7:57am, seizure number two came a little after 9am, Sam was holding strong with his opinion, but I am more stubborn, and after all this is Rosh Hashana, SHE IS GOING WITH US.  Sam left with the older kids, and I put her baby brother for a nap while she was sleeping the seizure off.  A little after 11 her brother woke up and I was getting everything into the stroller and I told myself I was going to check her one more time to see if she was awake, and if not, I would leave her home.  G-d threw me a bone, she was just waking up, so I told her nurse to get her up because she was coming with us to synagogue, and off we went.

Seizure number three happened in the back of the synagogue, but she was there, she got to hear the shofar sound, and she received the (Cohen Gadol blessing) priestly blessing while she slept in her wheelchair.  We were going to be eating lunch at friends and we decided she and her nurse would come with us and hang out there versus going home.  It was on big seizure four of the day (within 6 hours from her first) that she was given her loading dose of keppra and snuggled on the couch with her nurse.  What a way to welcome a new year...good thing the secular calendar has another celebration in 3.5 months that we can hit refresh for.

I will admit her presence with us all day was 100% selfishly directed, but is it too much to want some normalcy?   As Sam left with the older kids yesterday, he said "see you at 11:30", I yelled back, "no you won't".  He said "You have to hear the shofar", "So does Sonzee", I retorted.  I will admit that I threw myself a toddler tantrum and refused to go to synagogue because "If Sonzee was not going, neither was I".  I was angry, to be honest, I still am.  While she had fewer seizures today, (thanks 3200mg of Keppra, VNS, and Fycompa for doing what you're designed to do?) I am still a bit bitter.  I just hope Monday is not going to indicative of what is in store for her year to come, but I suppose if it is, it isn't anything we aren't used to. 

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Lost

On Sam's and my first date the discussion of the number of children came up.  We were "laying it all on the table" from the start, limiting the amount of potential surprises I suppose.  We both said between 4-6, however, if Sam had his way it would be enough to complete a full hockey team lineup.  Ironically, my one stipulation was that I wanted as many as possible before I was in my mid thirties with the reasoning that the older I got, there was a "higher chance" of having a child with a disability.  I will just insert that perplexed face emoji here and take a moment to pause. 

After our first daughter was born she of course became the center of our universe.  I was so shocked when I quickly became pregnant with our 2nd when she was only 8 months old.  We vowed from the beginning to make sure we carved out "dates" with her and ensure she always felt special.  Towards the end of my 2nd pregnancy we learned that her brother was going to be born with a heart defect, but we would have to wait until he was born to learn specifics and severity.  I honestly do not remember if I feared the logistics of how we would manage because soon enough he was born.  He spent a blink of time in the NICU and thankfully he required (and still continues to require) minimal medical needs.  With just the two of them, I was always so proud we were able to continue with our individual dates for her and then soon our son as well.

Throughout pregnancy #3 I was so nervous about how we would manage our sanity and being outnumbered, forget about that inidividual date time with each child.  When our daughter was born it was overwhelming, but we somehow managed again to fit in our special dates.  I felt so proud that we were continuing to make it all work.  When we became pregnant with Sonzee, while I was nervous about a 4th child in general, I was not especially concerned about making sure we would each have our dates, because we had kept making it work.  And then...

Life happened.

I am unsure where exactly it happened, but all of a sudden "we need to plan a date with [insert child's name here]" became something that continuously needed to be scheduled to happen, but was not actually happening.  We were doing our best to squeeze in a date here and there after each child's respective after school activity and utilizing organizations that provide tickets for us to take our other children to, however, somehow over the past year our oldest has managed to fall through the cracks.  Her love for dance disappeared close to 18 months ago and so our built in alone time vanished just the same.  Her oldest sibling mentality and personality in general led us to the false belief that she was fine. 

Recently I noticed a shift in her behavior and after mentioning it to Sam he agreed.  We decided last week instead of a Sam and Randi date night we would invite our daughter along.  We kept it a surprise and at last minute told her to get dressed because she was joining us on date night.  She got dressed up and had our amazing babysitter do pigtail braids.  She chose the restaurant and away we went.  At dinner I asked her if there was anything that Sam and I could do more of or that we weren't doing at all, to which she replied, "to be honest ema, I don't mean to be not nice, but I am really missing this...going on dates.  I want more alone time".

The reality of the confirmation weighed heavily, yet knowing we stumbled upon the discovery before more time slipped away paves way to some relief.  We all know the impact of a child with medical and or special needs is heavy on the entire family unit.  We know the positive outcomes that can come from having a sibling with medical or special needs.  As a parent, one of my biggest fears is the potential resentment that my typical children could develop towards Sonzee or Sam and myself over our preferential treatment of her needs.  It can be easy to forget that it isn't just Sonzee, Sam or myself that loses pieces of themselves during this special needs journey.  I know what it is like to parent a child with significant disabilities and am simultaneously learning how to parent the siblings of said child.  However, fortunately, but unfortunately for my children, I am left saying and thinking "I can only imagine what it must be like to be a sibling to a child with a profound disability". and so I hope none of my kids become lost.

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Packing

Over the past two days the townhouse we have been renting has been filled with half filled plastic bins, boxes, and suitcases.  The last loads of laundry are being completed, counters wiped down, and floors swept.  I have been putting off packing until the absolute last minute because I am not exactly ready to leave.  My mind knows that I cannot stay here forever, but there is something about this place that has my heart, I think it is the combination of mountain air and the most amazing friends we have continued to make and strengthen bonds with over the years.  So today we will walk down the steps of TH49 and drive down Town House Road one final time for 2018, and yes there will most likely be some choking back of tears.  This day every year is always bitter sweet as it marks the end of our summer retreat but paves the way for the next 10 months. 

I am always amazed at how quickly 6 weeks passes by.  Sonzee made it another summer with minimal interventions required.  She got to spend time in the pool, outside, bouncing in her bouncy seat, and relaxing.  I will be honest, she did minimal therapeutic activities and minimal work.  We can just pretend that her eyes were patched daily and that she worked on weight bearing after the 2nd week.  She did get 40 nights of sisterly snuggles, naps in the arms of Sam and myself, and a multitude of conversations with so many people who care about her.  She went to a new amusement park, returned to familiar places, witnesses a couple family lip sync contests and dance offs, and got to meet new people.  Her GI issues earned her a visit to the local hospital ER, but luckily she was not given a tour of the actual inpatient rooms.

Overall, in my eyes, I know her summer was a success.  This is small town in New York has turned into our safe zone, the place where reality is muted and life adjusts to a calmer, slower, and serene way.  So today we will pack up our bags and memories from summer 2018 and hope that google photos and my mind will do them justice and carry us through the tougher times that will inevitably come our way. 

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Peek-a-boo

Yesterday we did our annual summer day trip to Kelder's Farm.  My older kids absolutely love berry picking and going on the hayride and trampoline, feeding the animals, and milking the cow.  It is always a fun day and we share the experience with our family friends who have three children; their oldest is older than all of mine, their middle one is the same age as my oldest, and their youngest is a couple of months younger than Sonzee.  Over the years being around their youngest daughter has not really made me sad, just always leaves me in awe thinking of where Sonzee might be if she were typical.  However, this year as she is closer to being three it stings in a different sort of way.

Sonzee's older sister who is 5 has been playing with their youngest daughter almost every day.  They are so cute, and because my daughter is petite, they look close to being the same age, and make the cutest set of pals; hugging each other, laughing, and being silly together.  I was looking back through my pictures from our day at the farm and could not help but feel a pang in my chest as I saw all the pictures of the two of them on the trampoline and holding each other in the smiley-est embraces.  

Those pictures shouted at me "Someone is missing", "She is supposed to be 'Sonzee's friend'", "I should be settling the argument that she could be both of their friends".  It is always these random insignificant moments that crawl into my heart and tug at it in a way I could not have expected.  I have come to know these situations will occur, but since they are unpredictable in a sense, I am never quite prepared for how they will present themselves.  It is on the most perfect fun filled family days that the reality of who Sonzee was not afforded the opportunity to be, sneaks up unexpectedly and says "peek-a-boo".  

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Epilepsy Blog Relay: Subtle Seizures

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

When our daughter had her first seizure it was not in a way I would have thought a seizure would look like.  It was subtle, quick, and questionable.  I honestly wonder how many seizures in her first days I missed, or how many I saw but attributed to something else.  I often wonder if I felt them in utero, or if her first one occurred right after birth.  In hindsight, the "wonky eye movement" we saw, that was attributed to just being "weird baby" have become her trademark.  So many times her simple eye roll will be missed by those who are unfamiliar with her, and to be honest even those who know her extremely well can still miss these types, or just think she is being sassy.  They are so fast that epileptologists who are not her own have missed them on an EEG.  They happen when you turn your head to pick something up, when you blink, when you open the fridge, or when you rub your eyes.  They are less than a second and look benign.

So many times when I point out a seizure to someone who has just met Sonzee the responses are always the same, "Oh wow, I never would have known that was seizure" and "How did you know that was a seizure?" The worst part about her trademark eye rolls are that they are just as devastating to her brain as her other types.  They tend to occur in clusters, seconds apart, and for lengthy periods of time.  They are the most difficult type for us to stop.  It is this type that resulted in a call to 911, multiple rescue medications, and at the time a new to her fancy diagnosis of "non-convulsive status epilepticus".   

Before 2015 I had never thought about seizures much less known anything significant about how they might present.  Our family has now seen so many various presentations of seizures that our family is quite proficient in identifying most (if not all) types of seizure activity.  It is amazing that our 5, 6, and 8 year old can tell you the intricacies of different types of seizures.  What is so important to know about seizures is that they are not always obvious and they are not what you might envision.  

NEXT UP: Be sure to check out the next post by Abby Gustus Alford at www.livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET.

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Wonder

Last night we went to a BBQ for dinner.  Our friends have so many toys and a huge backyard playground, so it was about 5 seconds after we arrived that the kids disappeared.  The weather was actually perfect for Arizona conditions, which meant we were going to eat outside.  "Perfect" still means too hot for Sonzee until the sun sets, so we parked her wheelchair in front of the screen door so she could be with us from the air conditioned house, and we sat at the table right outside.  The children were running around, her baby brother was being passed back and forth between Sam and myself, and she was happily playing with her hands in her chair.

3 years in and I am beyond the daydream of seeing Sonzee playing with her siblings by the swing set or running around.  My mind knows better than to even go into that zone, but my heart, well that does not always get the memo.  I sat at the table having a fantastic time talking, laughing, smiling, and truly enjoying myself, but part of me was with Sonzee wondering what she was thinking.  Was she really happy sitting in front of the screen? Did she want to be running around with her siblings?  Was she really content?  Does the heat really bother her?

I hate that so many times she is physically with us, but we are not completely present with her.  We are unable to cross over into her world, or be privy to any of her thoughts.  Even though we walk over to her, give her a kiss every time we walk by, and say "hey Sonzee, how's it going?", I feel like we are neglecting her.  I can't help but wonder if what we do is okay, or if she wishes it were different, that we were different with her.  As soon as the sun was out of a direct hit, Sam brought her outside and let her enjoy the breeze.  She loves sitting in the breeze, and so there she sat playing with her hands, looking as if she couldn't be happier.  Yet, I kept glancing over wondering if she could be.

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Adjusting...

It has been a week since we brought home our new little man.  A week of adjustments for Sonzee and for our parenting of her.  She has been receiving extra love while in and out of the Ryan House and we couldn't be more thankful for having such a facility to help us care for her.  Her seizures have continued to be atrocious and I have already sat on the floor breastfeeding a newborn while consoling her and simultaneously crying.  Honestly the weight of it all at times is a bit much.  I have found myself wondering "why her?" and "why us?" more often than not.  

I know this newborn stage will fly by for our little man and I am torn on wanting to cherish and pause every second of it all and wanting it to fly by to be a bit more manageable for myself.  My heart is in a constant battle with itself bursting with joy and sadness literally in the same seconds.  Watching little man perform a simple task of moving his eyes in a way that Sonzee never did, focusing on my face with the blank newborn look of curiosity, another thing Sonzee never did.  All these small little things that he is doing that had me on edge with Sonzee because "something just wasn't right".  My heart simply hurts for her, for what she must endure, for what she doesn't get to do, for what her siblings won't have with her, for what I can't change or fix, for what we missed out on together.

I know the next couple of weeks will involve a lot of tears, both happy and sad, as we learn how to balance our "new normal".  I know it will be filled with a multitude of smiles and some stings to the heart.  I know it will be filled with a mixture of doubt and worry, deep breaths, and confidence that things will work out positively as I slowly learn to overcome the fears brought on by having a newborn turn out to be a statistic.  I know this part of our journey is going to be filled with difficulties, different trials and errors, and a good portion of mommy guilt...but then I have to ask myself, what journey isn't?

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Facing Facts

I am sitting in my newly renovated master bedroom, listening to the musical sounds coming from a swinging baby cradle swing holding a 67-hour old baby boy, and diagonal from another newly renovated space whose occupant is currently sleeping downtown.  It is probably not a fair week to judge me on my emotions, but my heart is bursting at the seams and simultaneously broken into pieces.  Most of these emotions I expected, but then there are the others, the sneaky ones, the ones that I wasn't aware even existed.

We introduced Sonzee's baby brother to all his siblings when he was about 14 hours old.  He was sleeping and content and doing exactly what a typical newborn baby should be doing.  He wasn't hooked up to any oxygen or receiving any antibiotics, and he didn't provide me with that lingering feeling of "something just is not right".  Our oldest two children were beyond excited to run over to the bassinet and see him inside, while our third child was a bit nervous and reserved.  Then there was Sonzee, sitting in her wheelchair, kicking her feet, moving her body, and I wondered, "Does she know what's going on?".  I quickly moved on from that thought, because honestly what almost three-year-old really understands the gravity of what having a new sibling means?!

Each sibling took turns saying, "hi baby", patting him, and holding him, and before it got too crazy I wanted a picture of my 5 babies, so I gave our oldest our youngest and I snapped about 40 pictures.  My heart exploding the entire time as I sat with them all, and then it was time for everyone to go home and get ready for bed.  After they left I took out my phone and reviewed the pictures of the meet and greet.  They are some of my most favorite pictures on a whole, but then it hit me like running into a brick wall.  4 out of 5 of our kids were sitting on the bed, while Sonzee was in her wheelchair.  In that moment it was a colossal explosion in my brain.  

I could have 10 more children, but none of them are going to make her typical.  Did I subconsciously think that a healthy child would erase the last 2 years and 9 months of pain I have experienced by watching her endure all she has?  Did I think that a new baby would suddenly cure her of her CDKL5 mutation and she would get up and jump on the bed with her siblings?  Did I think the memories of her NICU stay and the initial unknown worry, panic, fear, and confusion surrounding her first hours of life would be replaced by a new experience?  What exactly did I think would happen when this little man was born (g-d willingly) healthy?  

When Sonzee was the youngest her experiences were removed from those of her siblings.  There are years between when she should have completed certain skills and the moments her older siblings mastered them.  When I see other children Sonzee's age it doesn't bring me pain, and I have 3 other typical children I can quickly swap out the experience with, so I am no longer focused on "what if that were Sonzee?".  I don't think I fully realized that by having these amazingly positive experiences as we move forward, I will now have to really deal with the pain and the heartache of what we never had and won't have with our Sonzee.

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Simplicity

On Sunday we take our older children (with Sonzee in tow) to their weekly swim classes.  During their session in the baby pool to the right of the "big kid pool" is the class for babies 2 months to 6 months old.  Little babies that are getting acquainted with the water while bonding with their mom or dad, or both.  Sonzee participated in this class when she was that age.  I have distinct memories of her sleeping the entire half an hour due to having a seizure before entering the pool.  The other parents would all smile and comment about how cute it was that she was able to sleep the entire time, they never knew why.  I enjoyed that class because it was a time when Sonzee was "the same".  It was a time that I could pretend that she was not developmentally behind.  It was a time that her seizures, CDKL5, and our lives were essentially a secret to outsiders.

Today as I was helping Sonzee's twin girl get dressed, I was standing right next to the baby pool.  I could not help but stare at each baby and his/her individual experience.  There were 5 boys and 1 girl in the class.  Mostly dads were present and they all appeared to be on the younger side of the age range.  The mom or dad was taking a cup with holes at the bottom and letting the water fall over each baby's head.  I took note of all the reactions present; surprise, eyes closed with a squirm, and some pure delight.  I could not help but smile.  It has taken me 8 months to feel ready to blog openly that Sonzee is going to become a big sister in the next 6-8 weeks.  I have had so many experiences along this journey that I have wanted to put to paper, but it was not until today when that first baby in the pool gave such a huge smile as his reaction to the water over his head that I knew I could do it.

Chalk it up to fear of opinions, fear of something going wrong, fear of comments, fear in general, or maybe it is just the uncertainty of how our family dynamic is about to change adding another child into the mix.  Whatever the reason, I could not bring myself to "admit" that our world, Sonzee's world is going to change and deep down I know it will be for the best but on the surface, there is an immense amount of fear of the unknown.  What I have missed most about having an atypical child is the simplicity that a typical baby brings.  Yes, there are sleepless nights, there is the typical parent worry, there is the typical unknown, there are the typical challenges a new baby brings to a family, yet after having a Sonzee there is an appreciation for the simplicity that I am praying to occur with this baby.  Fear is deeply etched into this hope of everything working out the way I am so anticipating.  Sometimes the fear is so suffocating it is paralyzing, not that this baby will have CDKL5 (yes, we checked the best we could for those of you whom I know are curious) but of every other rare situation that could possibly occur.  Once you enter the world of rare you realize how not so rare it is.  However, in the recesses of my mind and heart is just pure faith that this baby is exactly what our family needs to pull us all together and keep us grounded in a manner of simplicity I am ready to appreciate in a completely new manner, all thanks to Sonzee.  

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Playtime Interrupted

Oldest: "Ema can I play with Sonzee in my room?" 

Me: "Yes, just be careful when you push her in the chair not to get her wires tangled"

Oldest: "Come on choupers, let's go"

(Some time goes by)

Oldest coming to me: "Ema, Sonzee is having a seizure, why does she always have a seizure when she is having fun?  I was reading her a book and she was smiling and all happy and then she had a seizure again...it's not fair"

---

Our oldest was just 5 years old when Sonzee was born.  An innocent, light brown haired, blue eyed, loving, caring, full of personality, dancing, playing around, typical big sister who has always loved to dote on her siblings and had to learn at the age of 5 what a seizure looked like in a newborn baby.  At 5 years old, she was wise beyond her years, but still a bit too young to fully understand or grasp all of what CDKL5 meant for her youngest sister.  Sam and I have tried over the past 2.5 years as hard as possible to protect her little mind and heart, answer her questions, give her only necessary information, and essentially trying our best to support her innocence a little longer.  However, our little girl is becoming older, smarter, and now at the age of 7.5 she understands more, hears more, knows more, feels more, and hurts more. 

I am not quite sure what hurts me most about Sonzee's seizures during her sibling playtime, the list is so long.  I hate that it disrupts a happy moment occurring between them all.  I hate that she has seizures in general and they occur so often that this conversation happens at least once a day.  I hate that our oldest must experience at 7.5 what I do now at 33.  I hate the sound of defeat our oldest has in terms of her play session being cut short due to the seizure "because Sonzee was having so much fun".  I hate that my only answer is "I know it stinks you guys were all having so much fun".  I hate that our 7.5-year-old rebuttals with "why does it ALWAYS have to happen".  I wish my reply could include more substance than "I don't know, it is such a bummer".  It ALL hurts.  It ALL breaks my heart.   

The silver lining comes at the end of the seizure, when I relocate Sonzee to her bed to rest and her oldest sister asks if she can finish reading to her in her room.  Our oldest and I have one of our typical sevenager disagreements because she wants to show Sonzee the pictures and cannot reach her crib, and I assure her it is ok, Sonzee will just listen because she is too tired at this point to look at the pictures anyway. I leave the room to two sisters, the 7.5-year-old reading to the 2.5-year-old and can almost for a split second forget the events that preceded and the fact that one of them has intractable epilepsy.  I will replay the events in my mind and will pray that tomorrow's playtime will go differently, but first I will memorize this image...because this gives cushion to the pain.  This love that our oldest has for her "twin-girl" is something that brings tears to my eyes.  She has her own twin size bed, with a memory foam mattress (that I personally think is extremely comfortable), but instead insists on sleeping on a toddler bed in Sonzee's room.  This brings me a wave of comfort even if it is just a ripple.

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The evolving role of Mother's Day

From the time I was a little girl I have wanted to be a mom.  I couldn't wait to grow up, get married, and have a baby of my own.  When Sam and I first got married I (naively) thought that it would happen just as I had dreamt.  The first 9 months of our marriage turned out differently than I anticipated as month after month I cried never seeing one positive pregnancy test.  In May 2009 when Mother's Day came around I was so overwhelmingly excited for my friends who had been or would shortly be blessed with their new titles of mom, but equally heartbroken it wasn't my turn.  Sam bought me my first Mother's Day card with words of encouragement, but my heart was shattered.  Within weeks of that "first" Mother's Day I found out that my dream would be coming true.

In 2010 I was beyond fortunate to celebrate Mother's Day as a mom of a beautiful baby girl, my dream finally complete.  In 2011, I was not only a mom to Laeya, but I was pregnant with our second child.  I was so beyond excited to celebrate that day, but my heart broke for those who were still struggling to build their families.  I felt so fortunate to be where I was.  By 2014 I would celebrate Mother's Day as a mom of three, and by 2015, a mom of four.  The day always amazing,  but that year was my first time with the title of "special needs mom".  At the time that specific title was new and had little meaning to me, but as the years continue on the uniqueness of that title plays a bigger role.

By the end of the summer of 2016 Sam and I were surprised when we found out we were expecting baby #5.  We were surrounded by fear and uncertainty rather than the typical burst of excitement.  We were scared and unsure. What if the baby wasn't typical? What if the baby had special needs?  What would people think that we were chancing fate?  By the beginning of October those fears were unnecessary as we didn't see or hear a heartbeat, we experienced our first miscarriage.  We were both "at peace" not being faced with needing to make challenging testing decisions or playing the "what would we do if" game, and we felt thankful that G-d intervened how he felt necessary.

Today is Mother's Day 2017.  I am so honored to celebrate being a mom to four amazing children I have been fortunate to meet, yet today is the first day my heart hurts in a different way.  Based on my previous pregnancy experiences and my due dates, I would be holding or about to be holding baby #5.  I wonder if my son would have a brother or if he would still be the prince of the castle.  I wonder how I would manage being a mom to Sonzee and a baby, and I wonder how amazing it would be for Laeya to be the biggest sister of four.  I think about how fortunate I am that today I can snuggle my four awesome children because there are so many beautiful mom's I know who are unable to do that, but today is the first day I have given this topic enough thought to be sad the number isn't five.

Mother's Day to me isn't about being spoiled or wanting to be appreciated more than any other day.  It isn't about what gifts I get or if Sam was able to get to the store last minute to pick me up a card (that I honestly could live without).  For me, Mother's Day is about honoring what it is to be a mom and learning how to adapt to the various titles, curve balls, and ever changing roles that come with being a mother.  Today is one of those reminders of how mothering can be done in so many different and beautiful ways.  So if you are a pregnant mom, a mom to a child you didn't birth, or one you had to or have to share with someone else, a physically living child, a healthy child, a sick child, a child you never got to hold in your arms, or to a child you are no longer able to hold in your arms, today and every day you should be honored to be a mother, and I wish you the happiest of Mother's Days.

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A tribute to Sonzee's oldest sister on her 7th birthday

I grew up as the middle child, smack in the middle of a big brother and a little sister, so besides the typical "middle child syndrome", I honestly do not recall ever being in the shadows to my siblings.  We all took the spotlight at one time or another and as a true testament to our great parents, they both attended everything that we ever took part in.  I never realized how lucky I should have felt nor how lucky I truly was to not have to live in the shadows of a medically complex sibling.

Today the baby girl who made me a ema is celebrating her 7th birthday.  I am an emotional mess as my heart bursts at the flashback of seven years of amazing memories flooding my vision as well as the heartache I feel over how much I have missed over the past two years of her life.  The sacrifices that have been made because of her birth order and thankfully fortunate health.  I think the life of a special needs sibling can be overlooked or passed over easily because "kids are resilient", but it should never be taken for granted.

As the oldest of four, the personal responsibility that our Laeya has placed on herself to take care of her siblings has been beautiful to watch unfold over the years.  She has always been a doting big sister eager to help, hold, and teach her brother and sisters.  She was given a special soul that shares a deep and unique bond with Sonzee that brings me to tears on a daily basis.  She ignores any grouchiness and just loves on her no matter the situation.  They have a connection unlike anything I have ever seen.  She tells us all the time that after she gets married Sonzee will come and live with her.  I cannot tell you how much joy and overwhelming peace it brings to my heart and mind because I know should this ever come to fruition, it will be the case.

While there is no shortage to the positive experiences having a special needs sibling has brought, there are similarly and sadly the same amount of less desirable situations.  No matter how much we try to protect her from the reality of the situation, she is not a baby, a seven-year-old "gets it".  There are situations she has sadly come to understand and expect and it breaks my heart that some of them are now routine.  No matter how routine it has become to miss holidays as a family or not be home for bedtime, she does not even show it, if that bothers her, she takes it all in stride.  She is one resilient, intelligent, sassy, loving, sensitive, and sweet girl.

My dearest Laeya, on today, your seventh birthday I want you to know that you have and will continue to bring a huge smile to my face and tears to my eyes as I watch you excel and grow into the beautiful person you are destined to be.  You will always be our Laeya bear, you will always be our first child, the one who we make constant mistakes on and learn from daily.  You will continue to challenge us and make us better parents (for that your siblings will thank you and probably hold a small grudge).  You will continue to outshine your previous performance in all aspects of life and I cannot tell you how much of honor it has been to be your ema over the past seven years.  I hope no matter how much physical time apart we may be forced to have over the years or how much time is spent "with Sonzee", that you truly understand that you are just as important and as valuable as her.  We love you and I hope this year will be your best yet!

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