Where It All Began…..Part 3

I was scheduled to be induced on December 22nd 2005  (still hadn’t heard back from UCLA about scheduling an appointment with a neurologist).  I was super nervous about giving birth again, since my last experience with labor and delivery was NOT easy  (like any labor is-but my labor with Kyle was seriously awful, you guys!).  I was hooked up to the meds and in 5 hours and 3 pushes later, my sweet baby boy, Cody Chase was born.  He weighed a whopping 8lbs 7oz!  The experience was completely different than my last, and I was on cloud nine!  Holding my new baby boy felt different than the last.  The love was still overwhelming and the excitement of holding my new baby was the same, but Cody instantly gave me a feeling of comfort and I felt like things were going to be ok.  I was wheeled into recovery shortly after where I shared a room with another new mom.  We didn’t say much to each other (cuz what do you say)…until the pediatrician walked in later to check on Cody.

I met Dr. Kundell and immediately loved him!  He was kind and super knowledgeable but I mostly liked him cuz he was super sarcastic; and anyone who knows me, knows I love a lil sarcasm!  I explained to him that I really wanted to get home as soon as I could with the holidays coming and I had a 2 year old at home that  was anxious to have me back.  He told me he would do his best to get us home the next day!  As he left, the woman in the bed next to me spoke up through her drawn curtain, “You have the BEST pediatrician!  He was my son’s developmental pediatrician and he was amazing!”  I immediately thought, did she just say DEVELOPMENTAL pediatrician?  Then I thought what if he could point us in the right direction with Kyle?  My mind was racing a mile a minute!  What if he was our answer!

The next morning we were discharged and on our way home!  I thought about Dr.  Kundell all the way home.  I obviously didn’t love our pediatrician at home and I knew Cody would need to see one at 2 weeks old.  So, as soon as I got home I called and scheduled my newborn’s appointment with Dr.  Kundells office, with the full intent of bringing Kyle in with me!  Hoping (and praying) I could *maybe* casually mention his issues and get some feedback!  I’m sure drs love moms like me!  But at this point I was kind of desperate and willing to risk him hating me and/or dismissing my request!

Appointment day came for Cody’s check-up.  Kyle was always difficult to take anywhere.  He always seemed upset when going to stores and dr appointments were NEVER fun especially in crowded waiting rooms.  So I knew I needed help, of course my mom was willing to help and we loaded my toddler and new born into the car and headed to see Dr. Kundell with high hopes and lots of time to plan how I was going to squeeze Kyle into the appointment!

Cody was completely healthy and got a shot or two and given a clean bill of health (yay)!  Right before Dr. Kundell was going to leave I asked him if he had an extra few minutes for me to talk to him about my other son, Kyle.  Kyle was running around in the patient room and making his usual noises mixed in with a few cries due to the enclosed small room we were in.  This kind man picked Kyle up and put him on the examining table only to have Kyle cry and squirm and crawl off of it.  I voiced a few of my concerns; not babbling/talking, gagging on different textured foods, walked late.  He began asking me a series of questions.  One of the first questions he asked was where he got some of his physical features, like his larger ears?  (I never thought my cute baby had large ears so I was kind of taken back by the question! Haha) He said that there is a genetic condition called Fragile X syndrome and  some of the signs that I was describing sounded like it might fit Fragile X, as well as some of Kyle’s physical features (People with Fragile X usually have longer faces, larger ears and have extremely flat feet-all of which Kyle has).  He explained that Fragile X can be tested through blood work but it takes a few months to get the results back, so he wrote out a prescription for lab work and had me schedule an appointment with him to do a full write up of Kyle.  My homework when I left was to do as much research as I could on Fragile X before my appointment.

I went back home and found a single website about Fragile X.  One. I read and tried to understand what it was saying but not everything made sense-lots of medical terms mixed in with a lot of science!  What I did understand was that the signs of Fragile X-most if not all pointed to Kyle.  I knew it was an intellectual disability…and the severity was different for each case. I was anxious for our appointment with Dr.  Kundell the next week, I was hoping he’d be able to answer more of my questions.  And get a better take on if this was truly what he thought Kyle had. 

Driving there I’m not exactly sure what I was thinking….probably just anxious to hear what he had to say.  He scheduled an hour visit for us and no other patients were in his office when we arrived.  Kyle felt more at ease out in the waiting room so that’s where we chatted.  He watched Kyle as we talked and I explained family medical history as he drew a bunch of charts. He explained a little bit more of what Fragile X was and its effects.  He explained that it was a genetic condition and that it affected the X chromosome, so he had gotten it from me.  This meant I was a carrier.  Which meant I had a 50% chance of passing this onto any future children.  He mentioned that about 20% of people with Fragile X also have autism.  As he was talking I began to feel my throat tighten, I felt nauseous and my eyes began to fill with tears.   My new reality was being explained to me.  As tears started to flow he said that he felt confident without the blood results that Kyle had Fragile X.  The first words I could muster up were, “how do we fix him?”  I already knew the answer before he even spoke a word back to me.  There wasn’t a fix. 

As I walked out of that office, my eyes still filled with tears and my heart physically aching, I felt overwhelmed with such grief and sadness and anger and bitterness and fear, and loneliness, and so many other emotions.  My hopes and dreams for my son were just shattered.  Leading up to this visit I still had hope.  Hope that my baby was fine and “was just a boy” and would catch up.  That hope was now gone.  My new reality was setting in.  I got home and just wept.  I wept for the son that would never have friends.  I wept for the big brother Cody would never have.  I wept for the son who wouldn’t  get to attend prom or college. I wept for the son that would never get married or give me grandchildren. I wept for the son I would never have.  I wept for the son that would live with me forever. I wept for MY hopes and dreams for myself that wouldn’t be fulfilled. I wept for the children I wouldn’t be able t have.  I wept for the new hard life I was about to enter into.   

A couple of months after my appointment with Dr.  Kundell, he called me and confirmed what we already knew…the blood test came back positive for Fragile X.  November of 2006  we visited The Mind Institute in Sacramento at UC Davis.  They do Fragile X and autism research. We got an appointment with an amazing dr in the Fragile X community, Dr. Randi Hagerman, where Kyle then was given the 2nd diagnosis of autism and Cody was tested and came back negative for carrying the Fragile X gene.

When you are given a diagnosis such as Fragile X or autism, that’s all you are given-well and maybe some reading material about the diagnosis.  They tell you all about therapies and programs that would be beneficial to your child but don’t tell you how to go about getting these.  You’re on your own to navigate territory that is completely foreign.  In my case, I know that I was led in certain directions that put me in the path of certain people that ultimately got Kyle the programs, therapies, and teachers he’s needed to progress. 

In the beginning of this whole process I remember praying to God telling him, I wasn’t strong enough and certainly not capable of the task of being Kyle’s mom, and immediately an overwhelming feeling of peace and comfort followed by a feeling of reassurance that indeed I was capable of this hard task and that I would be given the strength I needed to endure this.  From that day forward I have continued to find strength I didn’t know I had.  I have been able to do hard things and continue to find strength every single day.  

As I have been able to reflect while writing this short piece of mine and Kyle’s story, I can truly see how far we both have come since that dark day I walked out of Dr. Kundells office, into the elevator, and out into a new and scary world.  I realize now that Kyle never needed “fixing”.  He still doesn’t need “fixing”.  I was given Kyle to “fix” me, “fix” his siblings, and “fix” those who get the chance to work with my son.  Motherhood is definitely much different than I ever imagined it to be.  But I wouldn’t change it for the world because it’s more rewarding and fulfilling than I ever could have imagined.

 Sierra Exif JPEG

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