Dear Newly Diagnosed Parent

Dear Newly Diagnosed Parent, 

Welcome.  Today is the first of many days that your heart will simultaneously break and be put back together at the same time.  After all, when you agreed to the testing that has led you to this moment you did not really expect for the results to bring you here, to this point, an answer.  An answer that will undoubtedly leave you with more questions then you even know to ask and one that will never actually bring you any real type of closure.  

Whether you have reached this point while your child is still in-utero, hours, days, weeks, or years old, those of us who are already on this journey will become your best friends.  We have all worn a similar pair of shoes and while our children may not have the same diagnosis or the same presentation of the same disorder, we all get it in a way that others will never be able to.  No matter how far along we all may be on our own individual journeys I can assure you, we are all still grieving at various times and even if we look put together, we continue to take our turns falling apart.  

While I wish I could offer you a way to heal your now broken heart, that my friend will only come with time and in ways you aren't capable of grasping today.  Today is the beginning of your new journey, please try to wade through the waters slowly, and at your own pace.  The waves will come crashing at you and you may feel like you are drowning, be sure to grasp onto that life line even if it leaves just your nose and mouth out of the water.  Take deep slow breaths and remind yourself that nothing has changed since the moment you were actually told there was a reason for what your child has been going through.

My new friend, what I want you to know is that no matter how much time continues to pass from this day the emotions will remain raw and triggering moments will catch you off guard and always when you least expect them to do so.  You will welcome new parents into this club more than you would prefer, and each time it will be a moment mixed with excitement and sadness.  You will want to tell them everything you have learned since you first stood in their place, but you will remember back to that exact time and you will take a deep breath and just tell them to contact you when they are ready. 

One of the most important lessons I have been taught on this journey is that some things we all have to learn on our own and at our own pace, but eventually we all learn it.  There is no right or wrong way to sift through the cobwebs you have found yourself tangled in, so find a good circle of support, grab multiple boxes of tissues, and tell yourself that you will survive, it will not be easy, but "the greater your storm, the brighter the rainbow" - original author unknown.

Sincerely, 

A mom to a child who was diagnosed 3 years 4 months, and 11 days ago

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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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Napkins

During dinners during the week we make sure that we ask our kids a couple of questions about their day or week that will elicit more than a yes/no response.  They have become so accustomed to this tradition that if a couple of minutes go by during Taco Tuesday or Meatless Monday one or more of them will excitedly announce they are going to answer first.  While in New York I came across a brand of napkins that advertised their napkins were "conversation starters", and after a quick glance at the examples they were placed excitedly into the cart.

During one of our most recent meals one of our children received "Swap Day...Who would you switch with and why?"  A sideways lip and squinted eye along with "hmmmmm" was hummed while the answer was being thought over when another child said

"I know who I wouldn't want to be....I wouldn't want to be Sonzee, because she is missing her CDKL5 and it is sad"

I cannot remember Sam nor my exact reaction, but I do recall saying that I agreed it is really sad.  To be honest the statement did not catch me off guard, nor did it make me upset.  In hindsight if anything is sadder than that purely innocently stated truth, it was the fact that Sonzee was sitting by the table with us and there was not a look of hurt or even awareness that this conversation was occurring mere inches from her.

Last night I attended an event with an amazing speaker who touched briefly on the subject of grief in regards to child loss and infertility.  She mentioned that you can have children and grieve that you do not have more, that you can grieve that you became a parent but maybe not following the path you had envisioned, that you can feel grateful for the family you do have while mourning the family you might have planned.  Her words so perfectly spoken, I am sure resonated with every person in the room despite their individual circumstance.  For me, there were multiple times during her discussion I pushed away the tears that filled by eyes. A few times because I did not realize I had buried a lot of the emotions from our entire "becoming parents" journey, other times because I have never really thought to grieve over the miscarriage we experienced after Sonzee, and mainly because of the grief I have yet to settle within my heart over our family not turning out at all how I dreamed.

I never expected nor wished to have a child with a profound disability and I certainly never wanted any of my children to experience parts of the childhood they have had to, nor inevitably will.  However, I am beyond grateful they are learning one of life's most valuable lessons, that life is not fair, and it is how they handle the situation that is important.  They are learning to cope with challenges that will surely enrich them and at the very least enhance how they grow.  What I cannot adequately express is how thankful I am for their openness, innocence, honesty, and vulnerability.  In addition, the gratitude I have towards the creators of these conversational napkins should not go unrecognized because sometimes you need a prompt to a safe place to let your true feelings be known.


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Firsts

Yesterday was Sonzee's first day of the 2018-2019 school year.  Since she does not wear a uniform she of course was wearing an adorable "first day of school" outfit, complete with a rhinestone centered hair bow.  She took her first day of school picture in front of the chalkboard wall in the playroom and when it came time, she was escorted by an entourage into her classroom.  Since she attends school with her same at home nurses, I am left with little to no anxiety about the process.  We found her cubby, placed her items inside, explained to her teacher the stationary note I will send to school daily to keep her updated on how things were after the previous school day and the current morning before school, gave Sonzee a kiss, and off we went.

I walked down Utah Dr (which is the street in her building that her classroom is on) while I saw and heard the sounds of a more "typical" drop off experience.  Children sad to see their family members leaving, parents quickly running out in hopes that it would make it easier for the distraction to begin so their child would calm down, and me too preoccupied to give anything a second thought, while trying to hurdle the other kids I had with me out of the building so we could get to our next checklist item.

Due to every school day this week being a half day, a mere 2 hours and 45 min later, with the entourage in tow, we went excitedly to hear all about Sonzee's first day.  Maybe it was because of how wonderful things were last year during school, I did not give any thought to the possibility that her day would or could go any other way besides perfect for her.  I honestly do not know why with all of discomfort, cries, and pain she has been experiencing at home, I assumed that being away from home and back in school would make her magically better.  I do not know why I was taken off guard when her nurse told me how miserable she was and how she wishes something would work for her because she cannot spend her days like this.  I know all of this.  We have been living it all summer.  We have lived this so many times before.  

Last night as I sat thinking about Sonzee's first day of school I was brought back to a position of frustration.  Frustration that yet again, another first for her has to be tainted.  Frustration that another day for her was spent in pain and that we are failing her by having no answers or giving her any relief.  Frustration that this has become our normal.  Frustration that whatever band aid we do provide will likely result in more pain in a different way.   There is not winning and no matter how much normalcy we attempt to provide for her, it is nearly impossible for her to just experience a first. 

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Chasing

She’s out on the corner trying to catch a glimpse
Nothing’s making sense
She’s been chasing an answer
A sign lost in the abyss, this Metropolis

It has been a little over 2 years since we first and last dealt with Sonzee's GI issues.  We have never really gotten a clear answer as to what is going on besides CDKL5, and the bandaids we have used always seem to fall off.  It has never sat well with me, but after searching in and out of state and with multiple professionals, "You are doing amazing with making the best out of a less than ideal situation" has always been how we have ended nearly every discussion on the topic.  Maybe that phrase is supposed to make me feel better over what little bit I feel we have been able to do to comfort her?  Maybe it is supposed to make me actually believe we have and are doing everything we can for her?  Maybe.

Here we are two years later, no better off, but not for any lack of trying.  If only that made our current situation any different.  We will be having another care conference, and for some reason I feel the same way I did on March 15, 2015 before I realized we were going to live a real-life nightmare.  Finding myself completely caught off guard despite knowing deep in my gut what the situation is.  No idea what I expect to happen but knowing something must happen.  Praying I am wrong while hoping the situation will just fix itself all on its own despite history proving repeatedly that will not be the case.  There is a heavy rock sitting in the pit of my stomach leaving me unsure what best/right choice will lift it and wondering about unanswerable questions.

I will never understand why our Sonzee must suffer the way she does.  I will never stop praying for the suffering to end, despite where that leaves me on this journey.  I will continue to tell myself and attempt to believe there is some real significant meaningful purpose behind all that she has to endure and hope one day it will be visibly revealed and that the bitterness inside me has not eaten me alive by that point.  

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