Instead

On the first day of October, my newsfeed was filled with posts regarding infant loss and miscarriage.  This is such a sensitive and personal topic, but the more the posts that popped up on my feed the more my mind couldn't ignore my thoughts and feelings.  I personally make it a mission to avoid any controversial topic that could possibly offend others, but I just can't seem to bury my emotions on this one, so I am going to hope at least one other person will be thankful for this post.

3 years ago Sam told me to take a pregnancy test.  I argued with him, I told him I wasn't pregnant.  He said, "I have done this enough times to know you...take the test".  Three tests later and me convinced they were all incorrect we laughed and cried.  We weren't ready, Sonzee was not in the best place, our minds had not even settled on whether or not we could handle a fifth child.  I mentally had not come to terms with the fact that there would be absolutely no way to confirm if this baby would be healthy, how would I be sane for the entire pregnancy?  I emailed Sonzee's geneticist, I scheduled an appointment with my OB immediately, I panicked.

Our OB knowing where I was mentally immediately sent us over to the perinatologist we had used on the previous pregnancies for various unrelated to Sonzee reasons, and he got us in almost immediately.  We sat in his office and discussed all of the options should we find out this baby wasn't healthy.  He also said that during Sonzee's next labs we could send a vial over to a company that hadn't done her initial genetic testing to have them "confirm" the results so they would have it on file for any comparison testing we might do with the fetus.

4 weeks later we sat in the same office as he told us there was no heartbeat.  I recall feeling half relieved and half disappointed.  I rationalized that we had 3 healthy kids and that we weren't ready, but I feared that this baby might have had CDKL5.  Did that mean Sonzee was the result of germline mosaicism?  Did that mean we shouldn't even try again?

It took another 4 long weeks to actually miscarry and another 2 months for my lab work to return to normal.  The entire experience was 5 months in total. 5 months where others announced their pregnancies, 5 months where friends had healthy babies, 5 months that I was emotionally all over the place but few people knew the real reason behind it. 5 months where I couldn't move on.  I was and am still filled with mixed emotions over the experience.  I mourn the loss of the potential, but I do not mourn the fact that I truly believe something was unhealthy with the baby AND I know what having an unhealthy baby means. 

I spent a lot of time thanking g-d for knowing I couldn't handle another child like Sonzee.  I understand what happens when genetics doesn't get it right and the challenges that are the result of that shift.  I understand on an entirely different level than I could ever want, what happens if a child is compatible with life, but not capable of being a typical functioning member of society.  I understand how devastating the loss of a child can be, but I also know that in a lot of cases it is for a reason.  While we may never be told the exact reason, and not everyone can understand what it is like to be on the medically complex side of what that potential reason might have been, for someone like me, while I mourn the loss of what could have been, I am grateful that instead of having to watch another child of mine suffer, all of the pain of the what-ifs, of the potential, and of the unknown, was placed onto me to bear instead.

Controversial: Thoughts I have never written on paper

I get it, trust me I do.  I get it more than a large majority of the average population and I get it on a very specific level.  Doctors are not always right.  I would say without having taken exact statistics over the past 3 years 11.5 months that being right sits around 50% for medical professionals when it comes to Sonzee.  Ironically in a lot of our personal dealings, it is usually them who are presenting the more optimistic route and sharing the more "typical".

Since day one I was the one fighting for them to look deeper into my "mom's intuition".  It was me who was begging to be heard that "something wasn't right".  I had to fight so many times until she was 4 weeks old and had video EEG proof that my baby was not part of the "babies do weird things" movement.  The journey has been exhausting from the very beginning.

We did every possible typical testing that was provided to a pregnant woman while I was pregnant.  Sam and I had done genetic testing ourselves prior to having children when we were having difficulty conceiving in the first place.  My motto the entire time was always "I would never do anything, but I NEED to know".  Sam's motto was "Since we aren't doing anything, what is the point?"

When it comes to my pregnancy with Sonzee I have reviewed the memories with a fine tooth comb.  "You have a perfectly healthy baby" the NICU team even told me during her last two days before she was discharged home.  I asked multiple times about the questionable eye movements and her shaking limbs.  I mentioned it again at her well visit appointments when she was 12 days old and again around 3 weeks.  It was during week 4-5 that we learned she was having seizures.  It was during week 8 that we learned she was diagnosed with CDKL5.  It has been 3 years 11 months and 18 days since we have been living with the life of a child diagnosed with CDKL5.

Sure there are inchstones.  YES, we make the best lemonade there is to offer.   Are there amazing teachable moments that our family has experienced?  100%.  Will my children grow up "more compassionate, more loving, more understanding?"  Sure, and maybe it will have been because of Sonzee, but maybe it would have happened regardless?  We are part of an elite club, one that we are so thankful there actually is, but one I personally wish I never knew even existed.  I wish my other children would not have to know the harsh realities of what life with a medically complex and disabled child really means.  I wish they did not have to know what it is like to see their parents come and go in the middle of the night with babysitters, neighbors, or family members running over at all hours of the night while their parents and sister leave for the hospital.  I wish my children didn't have to see flashing lights outside their house or be comforted by the amazing team as their sister was being loaded into the back of an ambulance.  I wish my children didn't have strangers come into their home every day who they know by "nurse xyz" and who they are used to seeing.  I wish I lived more nights at home than I have at 1919 E Thomas Road on the 8th floor.

Sam and I never knew while I was pregnant what CDKL5 was or would mean.  We could never have fathomed what life would have looked like.  Even if a doctor had told us that string of characters and we would have googled we probably would have relied on the extremely rare minority of children who are physically much more able than Sonzee.  Maybe we would have prayed and felt that G-d was giving us what we could handle.  Maybe we would have felt hope that the test was wrong and that the doctors did not know what they were talking about.  Maybe we would have decided to live the same life we currently are.

The unknown becoming your reality taints your world.  There is only so much heartache you can ask yourself to take when it comes to literally watching your child suffer.  I can rationalize her smirks and occasional happier demeanor to meaning her life is content, and that she "doesn't know any differently".  The reality is she seizes multiple times a day, for minutes on ends, every single day of her life.  The reality is she is unable to hold her head up well, to sit unassisted, to walk, to see clearly.  She is unable to take care of herself by herself and no matter what potential genetic modifier comes her way, she most likely never will.  She will never be able to use her voice or really explain to me what is hurting her or how she is feeling.  She won't ever go on a date, get married and have children.  She will never be a typical and functioning member of society.

When Sam and I are faced with difficult decisions, I asked both of us one question, "Do you want to live the life she is living?"

I know there are stories of children thriving after a doctor told their parents they never would, but there are also children who are not.  There are parents who were faced with a horrible situation and they made a choice to say "yes, I want to live the life no matter how difficult it may be".  Then there are parents who made the choice not to live that life.  To those parents, I do not judge you.   No one should be judging you.  Your decision to take the baby you longed for and choose not to let suffer should not be looked down upon.  To the parents who didn't get offered a choice and are not living up to the challenges presented and maybe they are living up to them but feel they can't do this, or do not want to do this, I assure you, you aren't alone, and you should not be being judged.

Before we had Sonzee I would personally not have an abortion, but I never judged anyone who would.  After having Sonzee, with both pregnancies, I needed to know if the baby would have CDKL5 or any similar disorder.  I didn't know in certain terms what we would do if the testing revealed he/she did have the diagnosis.  What I did know is that after raising Sonzee, and watching her have to endure what she does on a daily basis, I would find it selfish for me to allow that life for another child.

Medical professionals are not perfect, they are mom's and dad's, they are just ordinary people who wake up every day and go to work and do the best they can.  They are presenting the facts the best that they know how with the information they have at that moment in their hands.  You have a right to disagree with them, you also have a right to agree, and no one should tell you which answer is right for you.  Maybe you could call me weak, awful, or non-inspirational from this point forward, but really there is no room for judgment even if you live this life, even if you made a choice one way or another.

I love Sonzee with my entire being, as much as I do my other children, as much as any mother can love a child, but I would never wish her another moment of pain or potential suffering and I would never wish the life of having a CDKL5 mutation on another child.

It's worth it

From the beginning of Sonzee's journey, Sam and I have been opened to pretty much any type of treatment that someone can present to us.  Even if there is only one person that the treatment has helped, we will give it a go to see if we can help our little bear.  We got a medical marijuana card early on in our journey for Sonze just in case we ever wanted to use more than hemp based cbd oil.  We were not sure we were ever going to "need" the card, but figured it would be best if we had it on hand.  

Back when Sonze was about 7 months, we started with the more well known Charlotte's Web brand and moved on from there when we felt that it was not the best fit for Sonze.  We then went on to try two more hemp based CBD oils.  Both of them came highly recommended, both of them have significantly helped at least one other child with a CDKL5 diagnosis with either seizures, cognitive abilities, or both.  Sadly, for Sonze, none of these seemed to do anything for her.  

After Sonzee's most recent hospitalization, we were left in the middle of a minefield if you will in terms of anti-epileptic medication choices.  It is really a hard place to be when you find yourself staring into the unknown unsure of what type of seizures your child will be up against, the frequency, the intensity and/or the duration; unsure of which drug will actually work.  Is there even one?  Sonzee finished steroids for her Infantile Spasms and hypsarrhythmia back in April, we weaned her Keppra finally in May, and it was just Depakote by itself to hold down the fort.  We were never sure if the Depakote was working for Sonze because her seizures had not really been visible since the steroids.  She had the occasional fragmented spasms indicated by her eye movement, but nothing else that was obvious.  After her blood transfusion eliminated the use of Depakote, we went back to Keppra out of sheer panic.  Neither Sam nor I ever felt it had any sort of control for her and she was always agitated and grumpy on it.  Since this was given to her when she was 3 months old, it was difficult to decipher what was Sonze and what were drug-induced behaviors.  After we weaned her, she was definitely happier, but Sam and I could not (still cannot) agree on the next step drug for her, so as a compromise and "holding drug" we went back to the Keppra.  It is tough to make these choices; I will leave it at that.

We agreed to help her mood and possibly cognitive capabilities we would go ahead and try CBD again.  In the back of my mind, I thought maybe it could help with her seizures, but honestly, it is really draining to put that high of an expectation on something that has already failed her multiple times in the past.  Instead of going back to one of the hemp based CBD brands we had in the fridge, we decided to take a drive to the local dispensary in our area and speak to those who are more knowledgeable.  We settled on a local grown blend and we were sent on our way.  

We started to give Sonzee the oil a little over 3 weeks ago.  Her seizures are back to what they were when she was about 5 months, once every 24-48 hours and lasting around the 2-minute mark give or take 30 seconds.  You might be feeling a bit let down at these words, but let me explain to you the wonder of this little green plant.  Three days ago about a minute and half into her seizure I decided I would see what would happen if I gave her CBD oil during her seizure.  By one minute 46 seconds, she had taken 2 drops and by two minutes and 10 seconds, her seizure was complete.  Was it the oil?  Was it just that her seizure was over anyway?  I am unsure.  Yesterday, her seizure began and at 30 seconds, I grabbed the oil, by 1 minute the seizure ended.  Today, her seizure started, I grabbed the oil, and the seizure stopped.  

I. AM.  A. BELIEVER.

The whole topic may be controversial, and people may lend their judgment to us for giving our child this oil, but honestly, I DON'T CARE.  If this oil takes away even 1 second of her suffering, I am on board and it is 100% WORTH it!

Mommy bloggers, Join me @ Top Mommy Blogs