April 16

Thursday, April 16, we meet again.  Who knew that 5 years from the day we first met I would be honoring you alone, missing the crucial piece that gave you whatever meaning it is you now have.  You are a day that I honestly don't think about for an entire year after you pass, but a day that I dread as you creep slowly towards me on the calendar.  I wonder if there will ever be a time I am at peace over what it is you actually represent.  I wonder if you will ever hold a bigger purpose than to just be another horrible, nagging reminder of all the pain that you brought with you that day in a small square office off of the 101 and 51st Avenue.  I wonder if I will ever forgive you for now being another day that I can no longer spin into something positive because allowing you into our lives ultimately allowed you to take her away.

April 16, you have always been a double-edged sword for me.  I have always tried honor and give recognition to what you have become, a date of vital significance, but one I wish didn't exist.  You will always be a date that I pay homage to the fact that you brought us an answer, albeit one we never wanted and one that at one point we didn't think could even exist.  You will always be a date that changed the course that our family was taking, and maybe one day I will realize it was for the best, it was something we could handle, and it was what was meant to be.  Somehow I don't think any of those sentiments will heal my heart, and they don't offer an ounce of cushion for the havoc that we all have endured over the past 5 years.

It has been 2 months and 13 days since she was taken away from me. 2 months and 13 days since I last got to feel her in my arms and since I last gave her a kiss.  It has been 2 months and 13 days since we became a physical family of 6; two boys, two living girls, and a daughter who died.  It was 2 months and 13 days ago that the fear that was always attached to the string of letters that was printed on the piece of paper no longer was fear but real and tangible.  But if I am honest with you, it was on our first encounter, 5 years ago that you essentially stole her from me.  In exchange for a measly piece of paper you took every dream I had for her, every dream I had for her and her siblings, every dream I had for our family, and every dream I stopped making that day.  If I loathe any day of the year, it is today, April 16, and while I am unsure if that is fair given you were just the messenger, I don't know if you can ever really be forgiven.

Diagnosis Day for the 4th time

"2:30pm on Thursday, April 16.  We waited only 5 minutes for her to come in the room.  To tell us again they only tested 71 genes, to tell us Sonya's positive result was on CDKL5.  To tell us that with that positive result on this gene and her clinical presentation of seizures, she would most likely have: epileptic encephalopathy early infantile 2, x-linked infantile spasm syndrome, and or Atypical Retts Syndrome. 

We asked our questions, I left there with some odd reassurance that just because she had a mutation with her CDKL5 gene did not mean she would have any of the ugly possible disorders assigned to the gene. 

Then I went online and typed in those 5 seemingly innocent letters, that in combination are no better off than a death sentence to a parent of a 2 month old baby.  And it was at that moment that I realized, sometimes it is better to be blissfully ignorant...sometimes it is better to not have all the answers, to not know the why."  - Originally posted on April 19, 2015

4 years have passed since we were given an answer.  An answer that over the years has been used and honestly overly abused to explain why she has seizures, why her stomach doesn't work, why she requires feeds directly into her bloodstream, why her eyes make wonky movements, why she has cortical vision impairment, why she does not sit, why she does not talk, why she does not have functional use of her hands, why she has low tone, why she cannot run outside and play with her siblings, why she does not interact with others in a typical fashion, why she has poor bone mineralization, why she is failure to thrive, and why one day I will have to bury my daughter. 

I wish the diagnosis had explained why it had to be her, the best way to treat all of the problems it has brought into her life, and at the very least given her a voice to let us know if she agrees with our management decisions, how the medications make her feel, if we truly are giving her a better quality of life, if the procedures have been worth it, and if she wants us to keep doing what we are doing. 

I have found myself wondering over these past 4 years, what good has knowing the cause actually done for her?  We dove right in thinking knowing when she was 8 weeks old would actually make a difference for her.  We clung to the (few) children we saw crawling, walking, and saying words, whose parents said that intensive therapy is what made the difference.  I convinced myself that Sonzee was young enough, surely she could beat the odds.  Except over these past 4 years, I have learned that no amount of intensive therapies, money, will power or determination can compete with her specific mutation.  It's helped our family cope, but it hasn't healed our hearts.

While we have spent 4 years gaining an extended family that stretches around the entire world, we have mourned the loss of TOO MANY siblings.  We have spent 4 years knowing that there is no cure, that there is no specific medication or treatment that can replace her mutated CDKL5 gene, that there is no way to stop her intractable epilepsy, and that there is absolutely nothing we can do to ease any of this for her.  We have spent 4 years clinging to hope of what I am not even exactly sure, but I suppose hope that all of this will change?

Of all the answers that we were given on April 16, 2015, I wish one of them had been, the results of the infant and child epilepsy panel did not yield any results.

The day before Diagnosis Day

It was a Wednesday.  I cannot remember the exact time, but I remember walking around the house while on the phone picking up toys and putting things away.  I can tell you what rooms I was walking in and out of and where I was when the neurologist said the words, "we got results back from her genetic testing, but I don't want to tell you what they are over the phone.  I don't want you to look it up, and think that will be Sonya".  I remember when I hung up the phone I felt relief.  I was actually giddy with excitement because we had an answer.  We would never have to wonder why she was having seizures.

This was great news.

I quickly learned on this journey that everyone processes things at their own rate and in different ways.  When I told Sam that we were meeting the next day because she didn't want to tell us the results over the phone I didn't quite know what he was thinking.  It wasn't until a little later that day when he called me from a gas station that I got a glimpse into his mind.  "Randi, it isn't good", was what he said when I answered the phone.  I was not even sure what he was talking about, but he continued on to say, "I looked up the panel, and there is only one good thing, and she doesn't have it".  I said, "Sam, you don't even know what you are looking up, it is going to be fine, we will have our answer tomorrow, stop looking things up."

I honestly was so content with knowing we had an answer it never dawned on me to even look up the panel.  Not once during the 3 weeks since that test was sent off did I even consider what was actually being tested.  I guess I was not always as neurotic, worried, or as pessimistic as I have become. When I think about that fact, I realize how much I have changed in 4 years.  4 years ago today even though I knew we had an answer, I still had no idea what that answer was going to lead to and what was going to be in store for our family.  4 years ago today, we were a little on edge, but still BLISSFULLY unaware of all the pain, all the surprises, all of everything that the characters CDKL5 was going to bring into our lives, and a lot of the time, I wish I could back.

Fate Sealed...

On March 17, 2015 during her first PEMU stay we agreed to send off lab work for genetic testing.  When the neurologist brought up the suggestion stating it was to rule out genetic causes of epilepsy, I shrugged my shoulders in a cocky manner because Sam and I had genetic testing done through a reproductive endocrinologist prior to any pregnancy, and everything as far as genetic compatibility went, checked out great.  Of course, in my mind, Sonzee didn't have anything genetic, how could she?  On March 26, 2015, the lab received her sample and began to compare her genetics to that of 187 genes associated with causes of epilepsy.  Life for us carried on, but oh, how naive I truly was.

4 years ago yesterday the report was sent to the hospitalist at Phoenix Children's Hospital.  Theoretically, her fate was sealed with that fax, but really it was always present; before I even knew I was pregnant, the entire 9 months I carried her, and for those first few weeks of her life during every questionable movement that was attributed to "baby's do weird things". Who would have even considered a genetic mutation for epilepsy?  Who knew such a thing existed, especially with no family history?  I honestly didn't even think about the potential positive result phone call, thinking back I don't even remember thinking about the tests after they were sent off.  While there was "no reason" for her epilepsy, that was "okay", it meant she could grow out of it, and that's what we wanted, that's what we hoped for, but that is not what we got.

4 years ago today, the hospitalist who sent for the testing electronically signed that she received this document.  I wonder if she had even heard of CDKL5 before this was placed on her desk.  I know when her neurologist at that time received the result she had not.  We remained blissfully unaware of what was sitting less than 5 miles away for another 4 days until her neurologist called to let me know she received results.  I wish I could remember life before seizures, before hospitalizations, before real worries and fears, before life with CDKL5 became our world and our normal.  I wish I could remember what I was like as a parent before our lives became consumed with all things CDKL5, before my naivety of the medical world was stolen from me, and essentially before her fate was signed, sealed, and delivered on a faxed piece of 8 x 11 paper to a doctor we hardly knew.

11 days

I thought possibly as time went on that I would get over it, maybe even get used to it, or that it would become easier.  It didn't, it hasn't, and I realize it won't.  At 9am this morning I had already given Sonzee a loading dose of Keppra and while that broke the cluster of spasms she had been having for 20 minutes, an hour and a half later she had another 11-minute seizure.  This is just part of the severe form of intractable epilepsy that comes with CDKL5.  I sometimes wonder what good it is to have received her CDKL5 diagnosis when all it is did was bring us a reason as to why she was having seizures, but no solution on how to make it end.

11 days now remain until the anniversary of diagnosis day, yet not a day has gone by since the official day that I don't have some type of flashback or vivid memory of that specific day.  I suppose the day doesn't even need to be acknowledged on its own because we live the representation of CDKL5 every single day.  For some reason, though I cannot get over the significance of that day.  I have the quote "what a difference a day makes" written above significant happier dates our family has experienced and inside a frame in the playroom.  I wonder about the difference we would be experiencing had April 16, 2015 not lead us to the knowledge of CDKL5.

13 days

On Saturday night Sonzee had one of her typical 15-minute seizures.  Her oldest sister sat down next to her completely unprompted and began stroking her head.  When I got the seizure tracker app open the video being captured was just so sweet that for a split second I could almost forget the reason behind the comforting.  I was not really thinking about much at the time besides that I needed to finish getting Sonzee's TPN ready, and then the silence was broken by an innocent 9-year-old asking if one of Sonzee's CDKL5 siblings walks. 

For the next 13 min and 59 seconds, my oldest continued to ask about the skillset of this other CDKL5 child and then spoke about another CDKL5 sibling who had passed who would have been her age and in her grade.  During the entire conversational exchange, she rubbed Sonzee's arm, her head, and was talking to her.  At one point she explained to Sonzee that she has seizures at the worst time because she made her siblings late to school last week.  From one perspective it was as if she was just chatting with her sister over breakfast, yet the reality was that her sister was actively seizing.
I sent the video to the mom of one of the children my oldest was referring to during the conversation and she replied "okay I am going to ignore the fact that the video is actually of a long seizure and tell you that it is good...[oldest sister] is too too aware though, it really breaks your heart". 

As we continue with 13 days remaining until Sonzee's diagnosis day anniversary, it is even more striking to me how much a diagnosis of CDKL5 effects not just the child, but the entire family.  April 16, 2015, was not just the beginning of Sonya's Story, it really was the start of a new chapter for every single member of our family that forever changed, and in some cases completely reshaped and shifted the trajectory for each of our individual lives.  While I know the positive traits our children are likely to gain because of such a diagnosis, a lot of the experiences they have to endure continuously break my heart.

Heartbreak again...

We got home from a wedding not too long ago and everyone dropped like flies right into bed after their showers.  That is everyone but me.  Sonzee needed her food refilled and her TPN started, so after I took care of that I came to my computer and thought about writing a blog post.  I was clicking through the years tab on the side of my screen to see how many posts I wrote in March over the years since I began blogging and then it dawned on me that in 30 minutes it will become April.  My heart skipped a beat at this realization and that pesky weight in my chest that I manage to push aside resurfaced.  It means in just 15 days it will have been 4 years since we first heard about CDKL5. 

Diagnosis Day, is probably one of my least favorite days of the year.  It is one of those anniversaries that I feel requires celebration, but yet it is a day I feel should never be honored.  Such a mixed bag of emotions.  I often wonder how it becomes April so quickly each year.  As if 365 days manage to literally speed by just to reach April 16.  It is one of those days like the birth of a child or Kindergarten graduation that you remember every detail as if it just happened yesterday.   A profound day in Sonzee's journey as well as our lives that gave us answers and a weird sense of closure yet at the same time an introduction into a world full of uncertainty, fear, and heartache that we had no idea existed. 

4 years ago we had no idea about the world that would soon be introduced to us.  A world that was existing concurrently but yet completely oblivious to our family.  A world where children were dealing with challenges we would never have even considered children would be forced to live with.  And a world where parents were making decisions that no parent should ever have to consider.  A world that I never dreamed existed because you don't even consider this sort of world will reveal itself to you or your family. 

I think about the 4 years that have gone by and I cannot even imagine what life was like without our knowledge of CDKL5.  Just 4 years ago we were strangers to the world we now only know as our world.  A world that once spoke a foreign language but yet is now the only language we understand.  A world that we couldn't comprehend and we weren't sure where we quite fit in, but yet the only world we now feel comfortable and understood.  A world where the bonds we make with others on the same or similar journey will far surpass those that could ever be created between those who can't imagine. 

Prior to April 16, 2015, I couldn't imagine, rather didn't want to imagine what CDKL5 was, or how a parent could parent a child diagnosed with something as challenging and horrific.  Yet, here I am, and here we are just 15 days away from the day that changed our lives forever.  While I feel grateful we didn't have to wait long to get our answer, I am still just as devastated, just as clueless, and just as broken as I was sitting in the car reading the list of items Sonzee most probably wouldn't do in her lifetime, because sadly...for us...for her...it was all true.

Details

Last Monday I took Sonzee's oldest sister to a doctors appointment at one of PCH's specialty clinics.  They are scattered all throughout Phoenix and I tend to take whatever is first available, so I drive all over the valley.  It was when I typed in the directions into maps and the blue pin popped onto the screen that I knew exactly where this one was located.  It's the one specialty clinic I have managed to avoid since April 16, 2015.

I cancelled the directions, because I knew exactly how to get there.  Every time I am on the 101 going west I do a quick glance out the window as I drive past, almost as if it is a nod of respect.  Yet in 3.5 years I have never walked back through the doors.  The entire drive there I was hoping my emotions would be in check.  After we parked and walked in I was surprised how unrecognizable it was to me.  There were no flashbacks in my mind of waiting in the lobby, no visions of where we sat or which door we walked through.  I couldn't remember if the room we were sitting in was the same room where the printed and highlighted research report along with 2 sheets of paper were handed to us.

I would have thought all of the details of the day would have stuck with me, but all my memories have a blurred background.  I remember the conversation we had with her doctor verbatim and I remember getting into the car and doing the exact thing she had warned against.  I remember every detail of the drive home and the first person I said things to do at my daughter's dance class that evening when she asked how the appointment went.  I remember the next morning when I could hardly get out of bed, and my mom telling me "time is of the essence", that I needed to get up, make phone calls, and do everything I could.

Little did we know that no matter how much effort was poured into our research of CDKL5, or how many therapies we would enroll her into, or how much money we spent on every alternative option provided, or how many second opinions we would get for treating her various symptoms, the outcome wouldn't be any different.  While the genetic mutation written on those pieces of paper certainly does not define her, it does set forth incredible limitations that even the most well intentioned, sadly, cannot overcome.

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Today is D Day...

April 16...we meet again.  3 years ago, today I was handed this piece of paper.  You were electronically signed 5 days ago, but I was blissfully unaware.  

Oh, how I pray that the chain of events leading up to that moment never had to happen.  I wish time could go back to the exact moment that the CDKL5 gene was forming in Sonya's body and do something differently.  If only we knew what or if there was something different that could have been done during that one split second.  I still often wonder why she was the chosen statistic and I am still unable to accept this is part of her life or our life, yet there is still nothing that we can do.

Today my heart is heavy, and it hurts.  I cannot officially say it hurts more than it did 3 years ago, but I can certainly say it is different.  3 years ago, my heart hurt because there was a reason Sonya was experiencing seizures and she never would "outgrow" them.  3 years ago, my heart hurt because we were told our 8-week-old baby girl might not develop in a typical fashion.  We were filled with fear and doubts over the trajectory she would travel.  3 years ago, my heart broke as I watched and heard Sam's break.  3 years ago, our hearts broke because we felt like we were at the bottom of the barrel.  

Today my heart hurts because 3 years have passed, and we watch our Sonzee bear seize multiple times a day.  We give her medications that help to an extent, but will never take away her pains, struggles, or seizures.  My heart hurts today because I have watched Sonzee try so hard to hold up her head, put weight on her legs, and try to sit, but her body still has its limitations.  My heart still hurts over the unknown trajectory of her path and the doubts and fears still present every day.  My heart hurts because I am more aware of what a missing CDKL5 actually means.

Over the past 3 years I have watched so many fellow CDKL5 children suffer and lose their lives and I know how real and likely this scenario is likely to become.  The past 3 years have taught me that while the selfish mom in me wants Sonzee here with me forever, the mom who has been present and watched her suffer for the past 3 years begs she won't have to continue to endure the absolutely horrific trials she has had to every moment of her life for so much longer.  

Over the past 3 years I have learned there is not much good that comes with a CDKL5 diagnosis, but good memories, great moments, and amazing friendships can still be made.  There will never be a moment that CDKL5 will ever be far from my mind.  The impact of this string of characters has been monumental.  There is so much I have learned over the past 3 years and so many changes that have been made.  While I wish with every fiber of my being the events that led up to this day 3 years ago never occurred and we were not the ones who had to learn all the intricacies of living a life with a child who is missing CDKL5 protein, that was not the case and we were...so here is to putting one foot in front of the other, waterproof mascara, a few runs to Starbucks and embracing Diagnosis Day. 

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13 Days

In 13 days we will celebrate the 3-year anniversary of Sonzee's CDKL5 diagnosis.  A day that no matter how much time has passed on a calendar, the details of that day will remain forever etched in my mind.  A day that I can confidently say "changed my life", and one that I feel I should say "for the better", but honestly, I do not believe that.  I can twist this scenario into being something positive.  I can say how my perspective has changed in many areas, or how I am a different,  and or there are people I met because of all of this, and how great these experiences have been, but today I am honoring the part of me that stays tucked away, afraid of being judged.

I loathe April 16.  It ranks up there among the days I wish could be erased from the 2015 calendar.  A day I wish would never have happened.  It is a day that no matter what, will continue to play out for the rest of my life.  It will forever remain a staple.  It is a day that cannot be erased, ignored, or forgotten because it was just a starting point.  It was the day we were first introduced to the string of characters, CDKL5, to a world that was essentially out there and just waiting for us to find.  That day we learned there was a community, an actual family for us that we never realized existed.  There were families that had already been affected by CDKL5 living their daily lives right alongside ours, and we never knew.  There were children who had already lost their lives due to one of the many complications that can arise being diagnosed with CDKL5, and I had spent 31 years oblivious.

Lately, I have found myself trying to envision what life would have been sans anything CDKL5.  It is hard to tell what exactly would be different.  Would I have had 6 pregnancies?  Would we still have had 5 children born?  Would we travel more?  Where else would I be dedicating my time and energy?  Was CDKL5 bestowed upon Sonzee to prevent something else from occurring to one of our other children, Sam, or myself?  I know the answers to these questions will one day be answered and so many more questions will eventually be asked.  After all, during this time 3 years ago somewhere in a science lab, a test was occurring that would give an explanation as to why my newborn baby was seizing, it just was not the one we wanted.

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10 days

Today marks 10 days until the 2 year anniversary of CDKL5 Diagnosis Day.  I am blown away at the mere fact that it has been TWO entire years since we first learned about CDKL5.  I do not know if it is more surprising to myself that we will have survived two full years of this unexpected journey or that it is still just as hard to make it through each day.  If I had been asked on that day where I would see myself or Sonzee at this point, I know I would not have been correct with my reply.  While I was filled with fears of the future, I could not have fathomed any of the experiences we have endured over the past two years.  It is practically impossible to even guess how this journey will play out unless you are actually living it.

Two years.  Approximately 730 days since I sat in a small office at the PCH Northwest valley specialty and outpatient center, and was handed a piece of paper that "explained" why Sonzee was having seizures, but not telling us how to stop them.  We were given a reason for her (soon to be) delays, her cortical vision impairment, her (soon to be) gastrointestinal issues, but again no way to prevent them, stop them, or help them from occurring.  We were given a string of characters that essentially sums up the cause of her challenges, but does nothing else to help us help her.  In 10 days, it will be two years, and we are no better off than we were on the day before we were told her results were in.  Yet here we are "celebrating" two years since her "diagnosis day".

I have always felt relieved that there was never someone or something to hold responsible for Sonzee's CDKL5 mutation, it helps to remove a lot of the anger.  However, I think one of the best things that come from this anniversary is that I can spend the days leading up to it, and the day of, releasing what bits of anger, hatred, and utter dismay for CDKL5 I have, so I can move on and then go back to dealing with this life.  I remember in the 24 hours from the time we knew results came back positive for a cause to Sonzee's seizures I felt it did not matter what we were told because "at least we would know", "at least we would have an answer".  Now as I sit here looking back over the last two years and to the future that lies ahead, I must ask myself, were we/are we really any better off having an answer?

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8 Things I Wish I Knew When Sonzee was first Diagnosed

We will soon be “celebrating” the one-year anniversary of Sonzee’s CDKL5 diagnosis day.  The results were identified after blood was taken on March 17, 2015, when she was only 4 weeks and 6 days old.  Just 9 days later on March 26, 2015 the genetic tests for the Early Infantile Epilepsy Panel were run.  This included testing for genetic sequencing errors on 80 genes that are responsible for infant and childhood epilepsy.  On April 11, 2015, when Sonzee was exactly 8 weeks old her report was electronically signed and we learned the cause of her seizures was due to an error on her CDKL5 gene.  I am still trying to figure out the best way to "honor" her diagnosis day.  As I continue to sort that out I will begin by sharing a list I came up with (with the help of Sam) of the 8 things I wish I knew when she was initially diagnosed almost a year ago.

1.  You will need time to grieve.
Grief is not solely reserved for those who have physically buried a child.  While you have not lost your child to death, you have lost the “perfect child” you anticipated you would have.  It takes time to come fully to terms with your child’s diagnosis.  Do not rush the process.  Even a year after the diagnosis, there are still days that result in grief.  Grief over the past, grief over the present and grief over the future life your child will lead.  Grief comes in waves and you should not expect to just “get over it”.  It is okay.  Allow yourself time to grieve over the expectations you had prior to the “finality” of the diagnosis.

2.       Do not be consumed by your grief.
While it is more than appropriate to grieve the loss of the child you anticipated, it is important not to let that grief overshadow the physical presence of your child.  You never know how long your child will be here on this earth and you don’t want to waste your precious time with him/her missing out on the joys of parenthood that do exist.  Live each day with as close to zero regrets as possible, so if g-d forbid you have to say goodbye sooner than you anticipated, you will not look back and say, “I wish I….”

3.       Having your child receive his/her diagnosis at an early age will NOT change the outcome. 
Not everyone is “fortunate” to have his or her child diagnosed when he/she is 8 weeks old.  We thought for sure that our daughter being the youngest child diagnosed with CDKL5 would mean that she would surpass the other children in the ages she would attain developmental milestones.  We thought since we had so many parents giving us advice regarding what they would have done had their child received their diagnosis early, that our daughter would be able to accomplish more and avoid more of the hurdles.  In the end, you can be as “prepared” as humanly possible, you can think you can outsmart the disorder, but when your child has a rare disorder, the rare disorder will still run its course.

4.       Having a diagnosis will give you closure in one sense, but will also leave you with doubts regarding the future.
You will hear many times that “at least you know”, or “you are so lucky that your child was diagnosed at such a young age”.  This is true on the one hand, as you have a support group available, you have a “projected route for your child’s journey”, and now all of the symptoms your child displays make sense.  On the other hand, you are seeing first-hand the ugly side of the diagnosis.  You will witness the struggles that potentially lie in your child’s future.  You will see babies and young children die along the way.  You are seeing a glimpse into the potential life your child will lead.  You can no longer hide yourself from the facts.  You are no longer able to be blissfully ignorant.  This can leave you feeling depressed and defeated.  It is okay, take it all in, and know that every child is different.  Your child will write his or her own story and follow her own path.  Just follow their lead.

5.       You are not a failure.  There will come times following your child’s diagnosis that you will look at other children and see their accomplishments and feel like it is YOUR fault that your child has not accomplished the same milestones.  All children develop individually at their own speed and have their own unique strengths.  What your child can and cannot do is NOT a reflection of how much time, energy, efforts, and love you are pouring into your child.

6.       Do not judge the parents who have older children with your child’s diagnosis.  When you look at children who are older with the same diagnosis as your child, your thoughts may wonder to “well if they knew early on then they would have been able to do this and that by now”.  You may think that enrolling your child in every therapy imaginable will make all the difference.  Keep in mind that all of those children were babies themselves and their parents did exactly what you are doing now, and they will always do right by their child as you will do for yours.  Just because you do not see their child meeting milestones, does NOT mean these parents are not working with their child every day.

7.       Lean on the parents of other children with your child’s diagnosis for support and guidance, they will be your best tool.
If you are as lucky as we have been to have an amazingly active and supportive online community that has children with your child’s diagnosis, become part of it.  Immerse yourself, make friends, and get to know the other children and parents.  They will be there in your time of need.  They get it.  They will lift you up when you are down, they will sing praises when your child excels.  No one knows what you are going through better than fellow parents.  No matter what part of the journey each parent is on, each mom and dad will welcome you into their lives as if you are family, because you now are.

8.       Trust your parenting gut.
You will spend a lot of time in and out of doctors’ offices and hospitals.  You will find professionals who have your child’s best interest at heart and others who will not.  Regardless, NO ONE is a better judge of what is going on with your child than YOU!  Trust your intuition and trust your knowledge.  YOU know more about your child than ANY doctor does.  ALWAYS go with your gut!

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