Welcome to Holland

This past week I totally played hooky! I got on a plane and flew to London with just my husband. For six glorious days I didn't once hear, "Mommy, I Need ______ (fill in the blank)." Steve was in London for work so I literally spent hours with just the thoughts in my head. So dangerous, I know! Honestly, before getting on the plane I was afraid that the thoughts would turn against me and not let me enjoy this once in a lifetime experience. I wanted so badly to just forget about the past few months, soak up this brand new place, and simply remember who Mitzi (not mom) truly is...

London Calling!

I believe it is safe to say that more tears were shed the week after Jack's diagnosis then I have ever shed before in my life. Always waiting for night to fall so that my precious little bugs wouldn't know that mommy was sad. What would become of them and their lives? Not just what will Jack's life look like, but how will having a sibling with Fragile X affect Nolan and Neva? I know, just by watching them with Jack, even before the diagnosis, that they would continue to be two very compassionate people. An amazing trait to have. But what else? Would they ever feel restricted? Left out? Would kids not want to play with them because of who their brother was…and how would they react to that? Would they resent him? Every night these awful questions would flood my head. I would try to push them aside and tell myself to focus on tomorrow. Just worry about tomorrow. One day at a time. Then the absolute worse thought enters. It's definitely still there….lingering…just waiting for me to remember hundreds of times throughout the day. This is because of you. You passed this on to him. You did this.
Its a guilt that I think will never go away. You see knowledge is power, and I am so happy that we know what it is that has taken hold of our Jack. But knowledge can also be horribly shocking. I am a Fragile X carrier. And women who are Fragile X carriers have a 50/50 chance of passing on the mutation to each of their children. Although I had no idea that I was even a carrier, it is true when I say that it is because of me that he has Fragile X.

Okay, well, that was intense. And that is basically how my grieving period went. Intense but short. Don't get me wrong, I still cry from time to time but I was ready to make sh*t happen with Jack after about a week into his diagnosis. We were going to take this bull by the horns!


We switched neurologists and had him begin this intensive 12 week developmental "bootcamp" called Pediatric Minds which was created by Dr. Hannauer. His new Neurologist.  I know how lucky we are that Jack is verbal, a lot of Fragile X kids are not. But he definitely could not communicate well. His words were limited and worse was the context in which he used those words.

"observations" were helpful, but tough!

       

Jack and his amazing teacher Celi
working through a tantrum.

Conquering the tantrum!

After completing the bootcamp (which he graduated the morning before we flew to London…friggin amazing day!) he can say well over 100 words and is putting them into 3-4 word sentences! He asks for help when he needs, he verbally makes requests and from time to time when I tell him I love him, he will respond with "I love you mommy!!!" My heart literally melted the first time I heard that!

Jack on Graduation Day with his Wita

At this moment, life is really good. Its not always easy, but it is good (I am not just saying that because all the kids are asleep and I am enjoying the quiet while sipping a glass of Chardonnay)! And you will all be happy to know that the demons did not enter my thoughts once while in London. I thoroughly enjoyed my time there. Huge shot out to Wita (my sweet mama) for watching the minions for 6 days. Gracias mami!

When I first entered this crazy special needs word the poem below was given to me. I read it but it never really resonated with me until receiving Jack's diagnosis. I hope it helps give you a glimpse into the world that was once completely unknown to me….XoXo

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Putting the X in XoXo

Steve and I were convinced that something more than just low tone was going on with Jack. When I would bring the subject up to his doctors, they would all tell me to wait…that time would tell. Oh sure, yeah, okay. I'll just wait out the tantrums and the anxiety. No biggie. Thanks. 

The only people that seemed to listen and agree with us were his therapists at Leaps and Bounds. They never directly asked us to do additional digging, but, in a very gentle manner, would ask if he had had genetic testing done. We didn't do any because, well, the professionals said we didn't need to. But right about this time, I really started to trust the people that spent 9 hours a week with him over the professionals that saw him maybe every 3-6 months for 10 minutes. So began the genetic testing process. It's just one little blood test.  Easy, right? Well, one would think that it would be easy, but I guess the fact that the people that could actually issue the order didn't think he needed it made it a little bit more tricky. The pediatrician recommend that I go through the neurologist. Okay, so I called the neurologist's office and I honestly could not believe all the push back I was getting from her nurse. "The doctor hasn't requested it," "it could cost thousands of dollars", "insurance won't cover it", "do you even know what type of test you want?" Seriously, lady! I could not believe this. I told her that I didn't care how much it would cost. I wanted the test done. He was my kid. I want the friggin TEST! And then the real hurdles came. The doctor would have to approve and request the test. Then insurance would have to approve it, and, THEN, they would send me to the lab to get his blood work done. You would think the entire process would take about a week, right? Wrong again. I am not going to bore you with the details of the endless hours I spent on the phone with this obnoxious nurse and the rest of the staff at the neurologist's office (21 days worth), but it all turned out to be absolutely unnecessary. In the end she admitted to me that all I needed to do was to take the doctor's order to the lab and that was it! No approval needed - nothing. More than 504 hours spent thinking and worrying about this ridiculous office and how to make them hurry up the process.   

On February 21, 2014, Jack's blood was drawn (super fun times) and sent into Quest diagnostics for analysis. He had two tests done. One for general genetic defects and the other to test specifically for Fragile X Syndrome. When I had mentioned to the doctors and therapist about his "panic attacks" this syndrome was thrown into the ring of conversation. I had no idea what it was and quickly did a Google search. You know how people tell you not to Google things because you will end up thinking some scratch on your arm is a flesh eating bacteria? Yeah, I really shouldn't have Googled it (side bar - the nurses at this fabulous neurologist's office could not answer any of my questions about the tests and actually told me TO Google it…Jack no longer goes there), but I did.  Fragile X - leading cause of mental disability and autism, sensory processing disorders, ADD, ADHD, extreme anxiety…the list goes on…Steve and I were officially freaked out.

On March 6, we got the results for the Micro Ray Chromosomal Test (the general genetic defect test) and everything came out normal…huge sigh of relief. One down, one to go!

March 14, the day before my birthday, was a Friday, so, as usual, we were heading over to our Friday play date. As I was driving to my friend Eve's house, I received a text from Steve. It read, "We have a meeting with Dr. Dyes on Monday at 3pm. Fragile X results in but Dr is only one who can interpret them and will do that on Monday morning." What? I tried to call him back to get the details but he was at work and I couldn't get a hold of him. I called my brother and just lost it…..how could they have the test and not tell us what it said. Why on earth would you tell us that you HAD the test?!? I had to call the office. I waited until the kids were all settled at Eve's and gave the ladies the low down. They were amazing and all told me to get on that phone and figure this thing out. I called the nurse and asked her if she had the results…she said she did, but that we would have to wait until Monday. "That is completely unacceptable. I need those results now." "Can't do it" she said, "what's three more days?" THREE MORE DAYS! What the hell was wrong with her?! I lost it. I started shaking; I started screaming into the phone telling her the hell that she had put me through the last 2 months! 2 months! 2 months I had been calm and cool, when I knew that I was going above and beyond to be patient and could have easily ripped her head off. But I hadn't, not until now. Enough was enough. "You will give me those results today and that is final. Do whatever the hell you have to do…just do it. Take a friggin picture of the results and text them to me. Fax them to my pediatrician if you need someone educated, unlike yourself, to read them. I realize that the neurologist could care less about my son and that he is just another number to you all…but I care. His pediatrician will care. How on earth could you be so cold?"

She told me that she would try and contact the neurologist and see what she could do. It was 4:30pm. The office closes at 5pm. I told her that if I didn't here back from her in 15 minutes, I would call back…Guess what? No call back. I was determined and would not take no for an answer, so I called back. She kept me on hold until 4:58pm and then answered the phone to tell me that she had faxed the results to the pediatrician but that her office was probably closed…thanks so very much you horrible, horrible woman. 

I quickly dialed Dr. Rowe's office, and sure enough the office was closed.  But I dialed 0 to reach the doctor on call and just prayed that someone in the office would hear my frantic message and call me back. 5:20pm…I got the call. I knew it without her having to say a word. I knew it, but I just had to hear it. "Mitzi, I wish I could tell you this in person, but I couldn't let you wait. The test is positive. Jack has Fragile X Syndrome." My heart was pounding and once again thousands of tears streamed down my cheeks. In an instant, I felt a strange relief - finally an answer. But, oh the pain. I didn't know what to say except, "Thank you. Thank you for calling me and telling me." She mentioned a million things: support groups, websites, research, the fact that he had the full mutation. I heard it all, but not really. I could only say, "Thank you"….and then I wept again….

 With that, our journey as a Fragile X family had begun. 

I am writing this now because July is Fragile X awareness month.  I know most of you have never heard of Fragile X before (we certainly hadn't), but I hope you keep reading our story to learn more about Fragile X and how Jack is showing us the true meaning of XoXo….

 

Knowing is half the Battle

J&N's first day at Leaps and Bounds

I can't even begin to describe how incredibly excited I was for September. School was beginning and with it I would be acquiring 3 kid free hours, three days a week. 3 FREE HOURS! Soooo...I had failed to calculate the commute time and all of the parent volunteer hours so my exciting 3 hours soon whittled down to 1. 1 GLORIOUS KID FREE HOUR! I will take that hour and do marvelous things with it like grocery shop, or take in the dry cleaning without 3 screaming children. Pure bliss.

Nolan's first day at AMP

The school year began and we all got into our groove. Nolan was following in his parent's footsteps and going to the local catholic preschool. A magical place, filled with love and warmth, called American Martyrs Preschool. The moment I met the director, Miss Jeanie, no other preschool stood a chance. She reminded me so much of my dear Yayita and of my sister in law's mom, Lois. A very wise, no nonsense kind of woman with a gentle soul. I knew instantly that this place was perfect for Nolan.

Jack during OT at Leaps! 

Jack was still a bit delayed so we decided to enroll him and Neva (they took her as a peer model) into an early intervention program called Leaps and Bounds.  This is where my beef with Harbor Regional Center and the "system" starts because had it not been for my friend Sara randomly contacting me via Facebook and telling me about this school, I would have never heard about it. It was the perfect place for Jack. They offered all of the therapies he needed and conducted them in a traditional preschool setting. I wouldn't have to spend every spare minute schlepping him from occupational therapy to speech and then to physical therapy, day in and day out. It was basically like an all inclusive resort. Well, no not really, but kind of. Why on earth would Harbor Regional not tell me about this place? Thank God for Sara.

Right after Jack had the tubes put into his ears we made the rounds with all sorts of different doctors and therapists. Ophthalmologists, Physiologists, Neurologists, Oh my. All came to the same conclusion; Jack had benign congenital hypotonia. Congenital hypotonia is basically just low tone that everyone believed he would out grow. The neurologist was even kind enough to give us a timeline. According to her, he would catch up to his peers no later then his fifth birthday.  Every 3 months we would go back to the neurologist, she would take 2 minutes to look at him and tell us that he looked great. No further test, no further questions. Another 3 months would pass and we would hear the same. Frankly, it was music to my ears. What mother doesn't want to hear a brain specialist say that their son is total fine, just a little delayed? And knowing that in five years or less he would catch up made this teeny tiny pill so much easier to swallow. This went on for a year. In January of 2014 I stopped believing her.

Shuffle Board was played
at the party!

She got me to smile!

On January 18, 2014 we drove up to Thousand Oaks, CA to celebrate my wonderful brother in law Chris' 40th birthday. The place was packed with familiar faces. Friends and family had come from all over to celebrate Chris. I am not sure if it was the amount of people, the noise or what. But the moment we set foot in the restaurant a flip switched in Jack. He immediately started thrashing, screaming, crying, and clawing at me. He needed to get out, get away, I could see it in his eyes. But where? What do I do? Is he just hungry? Is he sleepy? Does he have an ear infection? (all the moms out there know about running the laundry list of "could it be's" when the kids act out). We gave him some food and he stopped for a bit while he stuffed his face with mozzarella sticks, but almost immediately started up again. Wreathing his body so I could barely keep a hold on him. I could feel the sweat dripping down my back…why the hell did I decide to wear a sweater? I took him outside to the patio and he was able to calm down a little bit. Outside he still seemed a little anxious, but at least we were out of the public eye. I was devastated and frankly a bit humiliated.  I know that I should not have felt that way but I was so proud of having such well behaved kids. So stupid, I know but I was embarrassed. He was making such a scene, this wasn't my Jack. Was he having a panic attack? Do toddlers have panic attacks? I was a pro at dealing with toddler tantrums, but this was a whole other beast. I tried to do whatever I could to distract him. I tried singing, playing with rocks, leaves, whatever I could find. After nearly 2 hours of this we threw in the towel. The kids fell asleep on the car ride home and all was back to normal in the morning. Maybe it was just a one time thing.

The next Friday I loaded up all the kids in the car and headed over to my friend Susan's house for our weekly play date. This play date is often the sole reason I make it through the week alive!  I don't care if I have to wake 3 sleeping babies to get there, we never miss it! These 9 women (and our 19 kids) are my family in a place where I have none. We can count on each other, we vent to each other and most importantly we laugh with each other. Because there really is no better way to go through this crazy motherhood thing then with humor.
Okay so anyway, Susan's house was obviously a place that the kids were very familiar with. But for some reason the moment we walked through her door, that same switch that we had seen the weekend before flipped on in Jack. He immediately started to throw himself on the floor, then pick himself up and run right into me hitting, screaming, biting. I didn't know what to do. I asked Nolan and Neva if we could just go, but they were having so much fun. I felt so guilty taking them away from their friends when we had just arrived. I thought that maybe he would warm up to the situation so I waited. I tried to feed him, soothe him…nothing worked. My heart was literally going to pound right out of my chest. I'm not sure if it was because of the humiliation or the anxiety of not knowing what was wrong with my child. I took him into Susan's room and sat in one of her daughter's over sized pottery barn chairs and rocked him with all my might. His little body responded well to the pressure and he calmed. My body went numb and I felt this overwhelming wave of hopelessness come over me. Tears were streaming down my face as I held my son tight, rocking him as hard as I could. I knew then. Something was definitely not right.

The following Monday I called all of his doctors and told every one of his therapists what had happened. I needed answers. Why was this happening? Jack is such a social little guy. He connects so well with people (when he isn't having a panic attack or whatever this was). I knew in my gut that he wasn't autistic. All of his doctors and therapist agreed. Jack was not autistic.
So what then? What on earth could this be?

My Happy Jack

Two is Not Always Better than One!

In 2013, we decided that our awesome beach house with four levels, three sets of stairs, and no room for all five of us was just getting a little too tricky - especially with two brand new, very unstable walkers. The poor kiddos had no where to go in the house and there was zero toddler friendly outside space. And although the 40 something stairs that I had to sprint up and down on a daily basis kept me in shape...I was over it! So, we put our house on the market. We decided to live in it while we showed it…which we thought was the smarter move, the joke was on me. Try keeping the house "show ready" with 3 toddlers. Ha! Total joke…no wonder it took "longer than expected" to get an offer. We did eventually get an offer higher then asking…no negotiating there. Done and done.

We found the perfect, family friendly house. It was in a great neighborhood in Manhattan Beach. We were feeling pretty pumped. In July we had been living in our house for little over a month and were on day two into potty training Nolan, when Steve and I  were abruptly awakened to a super loud thud and blood curdling screams. I squint at the clock…it was 3am. Who? What? What the hell was going on? In less then a second Steve and I went from fast asleep to sprinting down the hall. We found that it was Nolan screaming and he was huddled in a ball on the floor of his room. He told us he was scared and tried turning on his light but flipped over the headboard. I climbed into bed with him and held him all night long. I should say all night LONG. The poor kid did not cry again, but just kept waking up saying "mommy, it still hurts. It still hurts. He must have fallen on his arm, although it was unclear at 3 am what part of his arm he hurt. I thought a dose of Motrin and a homemade splint that I made with his sister's tights would do the trick until morning and it seemed to. Come on morning, hurry up already and get here.

I had never had a broken arm and neither had Steve, but I remembered that my friend Bryn had a couple broken bones and knew that she would be up early with her little ones, so I called her at 7am asking what signs I should look for. I told her that he wasn't crying or whining he just didn't want anyone to touch it and he kept hugging it close to his body. She immediately told me to hurry
to the doctor's office. At 8:30am (the time the doctor's office opens) I had the kids and the Potette Plus (with extra baggies - all potty training mommies know what a Potette Plus is!) all loaded in the car. I would call this a no appointment needed situation and decided to just show up. One look at his arm and the doctor sent us over to the orthopedic surgeon. But before we could go, like any self respecting potty training mommy, I first made sure to bust out the Potette and tried to get Nolan to do his business while still in our private room...nothing. It was his first time peeing in public so maybe he needed to use an actual toilet like at home. I ushered him into the tiniest bathroom you have ever seen. It was clearly made for one. There was NO WAY all four of us would fit in there. So picture this…I put the twins in the stroller and left them in the hallway.  But for some reason, I always think that I need to be touching whatever device they are in or on or it will just roll away. So I had one leg on the stroller, which also happened to work magically as a door stop. Nolan was sitting on the Potette that was now perfectly positioned on the real toilet, but of course Nolan wanted mommy to hug him, while trying to get "his pee pees out". Okay buddy, I will stretch and contort my body any possible or impossible way just for you to go pee pee. Come on Nolan, you can do it. No pressure. You can do it. Just a little bit. Don't mind your brother and sister..they are crying because they are cheering you on. (trying to rock stroller with non standing leg…yoga don't fail me now)…and after all that - the question is did he do it.  And the answer….drumroll please… y-no…nice try mommy.

The orthopedic surgeon was just down the street. So I thought, we'll just check in and then back to whatever bathroom they had there. We sign in and I mention to the nurse or whomever she was that we were going to go to the bathroom because we were potty training *wink. Luckily this bathroom could accommodate all of us plus the stroller but of course a couple of somebodies hated the "feeling" of the bathroom and nothing happened. I'm sure the fact that he had an undiagnosed broken arm really helped Nolan feel extra akward about peeing in a public facility and the fact that his little brother was screaming bloody murder in an echoey bathroom didn't help the matter. Back to the waiting room for us. I was looking right at the nurse…burning laser eyes into her forehead saying, did they? did they call us? Look at me. Look at me and tell me to go back. She didn't look up. I'll have to work on my laser eyes. Ugh. Okay. I parked us by the fish tank hoping that would be enough entertainment for the wait. Not even close….all I can say is thank God for snacks, candy, handheld devices and everything else kids "shouldn't have." All those things were just about to fail me as well and suddenly we heard the sweet sound of "Nolan Henry, come on back!" Thank you Jesus. Once in the private room again, I pulled out the handy dandy Potette again. It had been at least 2 hours and I was sure that this kid had to go. I used the stroller as a shield to try and give Nolan a tiny bit of privacy and of course the doctor walked in while his pants were around his ankles…still nothing!

The x-rays confirmed that his arm was broken and the doctor said that someone would be right in to put the cast on and give him a splint. We wait. And wait. And wait. COME ON people. I tell someone else that I will be right back with all the kids and head back to the restroom with the bad ju ju because maybe he had to do go so bad this time that it would just happen…hahahahaha! It didn't happen. We head back to our glorious suite (ha, again) and by that time they were in fact looking for us and were ready to patch him up. Three hours since this poor little guy had last had a tinkle and he seemed to be handling it much better then his mom.
He actually loved the whole process of getting the cast on and being able to choose red as his cast color! The color of Lighting McQueen! Finally, nearly 4 hours into this whole escapade I load them all up again and beg Nolan to please not pee pee in his car seat. We made it home, and he was dry as a bone! He made it nearly 4 hours without one single accident, on his first public outing, with a broken arm. It's the little things…but I was one proud momma!
Two weeks later the cast came off and our little guy was as good as new.

August brought the entire family together in Livermore for my brother's wedding to his beautiful bride Chelsea. All five of us were lucky enough to be included in their wonderful day.

No Broken Arms! Yay!!

On September 16, three days before Neva and Jack turned two, Neva was trying to climb down my bed and fell. She is a really tough little girl, so when she would not stop crying after about an hour, I just knew that her arm was broken. It was Thursday at 5pm, so to Urgent Care I went with my broad. I'll keep this part of the story short, but they could not find the brake in her arm after two different places did x-rays so she went nearly 5 days with a broken arm before a doctor would finally give her a cast. Always trust that mother's intuition ladies...

Ironically our family friendly house brought 2 broken arms in the span of 2 months! So what did we learn from this? Well, that the Henry kids and beds just don't mix. But, in the words of Pete the Cat…"Do we give up? Goodness no!" Fall was upon us and with it new schools, new beginnings and new adventures! Bring them on!

Victory! Year One is Done! (easy street from here on out, right?)

WE SURVIVED THE FIRST YEAR! High fives all around. I apparently threw, decorated and attended an appropriately themed Bug birthday party for our one year old twins….thank God for pictures because as formerly mentioned….I don't remember a thing.

Goodbye non-mobile little infants. We had officially embarked upon toddler world.  Frankly, not much changes except the fact that these eating, pooping, crying machines can actually move around at alarmingly fast rates. And as luck would have it, they do not like to be more then 2 inches away from their mother. So long privacy. It truly was a pleasure. I'm sure you have seen those pictures of the adorable little fingers sliding underneath the closed bathroom door, reaching for mommy….adorable. Not so much the fingers, the thought of a closed door and just me behind it, that's the adorable thought. Behind my very open door, I had (have) full on toilet paper pulling, I need mommy (buddy, you're sitting on my lap, there is no getting closer to mommy), let's poke my brother in the eye and see what happens, happening. And while on the topic. What is this obsession with the toilet?! Nolan never had this obsession, so it was all new to me..but man, it just called to the twins like a beacon. We must flush. We can hardly walk but we will find a way to that disgusting toilet water. We must throw anything and everything into the toilet! There currently is a wooden train whistle stuck in our guest room toilet that the plumber cannot get out, I'm thinking they haven't grown out of this stage yet!

At their 1yr check up the doctor mentioned that Jack's tone still seemed pretty low and that physical therapy might help him strengthen his muscles and make it easier on him to learn how to walk, climb, jump, etc. We immediately set up an assessment for that and started classes the next week. If you're not sure what low tone means imagine trying to pick up a very wobbly wet noodle. Clearly, Jack was more stable and stronger then that but you get the idea. Dr. Rowe also thought that making an appointment with the Regional Center would be a good idea just to have him checked out. Okay, wait…what the hell is a Regional Center? Why does he need to get checked out? Didn't you tell us this is something he would "grow out of"?…tornado of questions blowing through my mind. All of which I never asked aloud. Why? I have no idea.

Honestly, Steve and I were not really in any rush to have him assessed because going into any assessment we knew that he was developmentally behind…I mean c'mon we have two other kids nearly the same exact age at home. In the Fall of 2012, we were the experts of 1 year old milestones. We knew. We took him anyway and so started a whole other series of assessments, tests, examinations.  Obviously they were kind enough to tell us that he was behind. Yeah, caught that, thanks.

By 14 months, Neva was a waddle walking machine. Jack was very happy to continue crawling and could actually keep up with her. At 17 months we got just a little bit concerned (although Steve didn't walk until 19 months…which he swears is a sign of intelligence because why on earth would you walk when you can be carried)! 18 months old and still nothing from Jack.

That Christmas we decided to split time with both of our parents in Livermore. Before the trip Jack had had an ear infection and was then on his second round of antibiotics. When we got home from Christmas break we had him checked out and the poor kid STILL had an ear infection. He was a little bit of a fussy kid in general but nothing extreme, definitely never showed any signs of an ear infection.  What if he had had them all along? For like, his entire life….could you imagine? This poor kid! We had no idea. Hello?!?! Of course he was a nightmare on that flight home from Hawaii….It all makes sense now. More appointments…ENT, Hearing consultant (such a weird exam), and neurology…just in case.

All agreed that tubes had to be put in immediately. They checked his hearing and the poor kid could virtually only hear our yells and screams (they were all done in a playful manner I swear…we are very happy people). I mean, come on. How did we let 18 months go by and not know! Of course he was delayed…the poor kid couldn't hear! He couldn't balance due to the fluid in his ears and couldn't speak because he couldn't imitate something he couldn't hear! He must of thought we were all crazy people!

I was able to go into the OR with him while they put him under. It was awful actually. They told me exactly what to do…look into his eyes so the last thing he sees before he drifts off is me. Easy enough, I thought. I sit down in a chair with him on my lap and they get the mask that will release the sedative ready and say "go ahead mom, just talk to him like normal." Well it wasn't normal and he knew it. He started crying, and thrashing and just looking at me with his huge brown eyes asking me why I was letting them do this to him…ugh. It's the worst feeling in the world. And all the while the nurses are gently saying "look into his eyes, talk to him" BUT "don't get to close, don't inhale, don't breath…you may pass out too." Literally 10 seconds in, he was out. They took him from my arms and laid him on the operating table….I couldn't breath. They led me out to the waiting room and I just sat there and cried. Because, really what else do you do in these kind of moments? You friggin cry.

"untacking daddy"

He was out of surgery and awake in about an hour. And like magic…our little Jack could hear! He seriously was a new man. His first day home he decided to participate in a game of "untacking" (game title given by Nolan because he liked the sound of it better then attacking or wrestling). PreOp Jack would stay back and look at us like we were crazy, but that day he joined in! He must have thought we were trying to kill each other before! Jack had "untacked" his way to top of the dog pile and so we clapped and cheered for him and at first he looked a little shocked and confused, then he smiled so big with that amazing Jack smile of his and I just knew that in that exact moment, Jack was hearing praise for the very first time. An amazing moment.  
       

p.s. Jack walked at 19 months (on Mother's Day)!

Welcome to Paradise

The summer of 2012 was wonderfully exhausting. But we weren't quite tired enough, so we thought, what the hell, lets go on vacation! You know, vacation with a 2 year old and two 10 month olds. Super, super smart idea. Step 1: book the travel. Steve Henry's amount of work travel finally paid off (well, you know aside from the whole, he supports us and puts a roof over our heads and food on the table)!

Side bar…. this guy travels so much that he actually holds the concierge key for American Airlines. You know the Black Card that George Clooney is after in Up in The Air? Yeah, Steve Henry has it. And frankly it is AMAZING! Red ropes upon curb arrival, bell hops, no terrible long lines (actually, they told steve that he didn't have to go through security but that his wife and children did…smart move on his part to stay behind with us minions).

Step 2: Get through the 5 hour plane ride with three babies!
We may have had a red rope reception, but the rest of the airport could care less about the parents pushing their three kids in two strollers, pulling our weight in luggage and one cannot forget the two carseats strapped to our backs. As Steve likes to say he had become, "that guy" in airport. Pack. Mule. Thank God my mom and dad were kind enough to fly through LA and get on the same flight as us! I seriously have no idea how we would have survived without them. 

I don't remember much about the flight to Hawaii. That probably means that it went well. I do remember that after landing and seeing the ginormous chevy suburban we had rented for the week Nolan announced, "I so happy Daddy!" This was the first time he had verbalized and expressed pure emotion with his words. An amazing moment for Steve and I.

Being in Hawaii was amazing. Having our kids splash around in the warm ocean water and seeing them grow a strong and special bond with their wito and wita was a dream. What wasn't a dream was our run in with what we like to call "the sleep terrorist." Jackson Quinn Henry. Keeping his family hostage absolutely, every single, morning from 3am until sunrise. The first night we were a little unsure of what we were hearing…was it a growl? A moan? A cry? Imagine a mixture or all three. Super awesome sound, right? Especially at 3am for at least 3 hours! By the third morning even little 2 year old Nolan had had enough…we heard the tiniest voice, barely awake enough to grunt, "no, Jacque, no" (at that age Nolan sounded a lot like a frenchman).

Somehow, with the help of wito and wita, we were able to shake it off every morning and have an amazing time. Lots of pool time, coffee, beach time, and coffee.  I even managed to get some pretty cool Christmas pictures done….that's right. Christmas in August. I'm always prepared people. Always prepared...
                         
                         


Step 3 (or maybe 4 or 5…): Get through the 5 hour flight home. This one I remember. I remember it well (Insert sad face here).  We were about 3.5 hours into the flight and poor Jacky could just not get comfortable and decided that he wanted to scream, cry, and thrash as loud and as hard as he possibly could….for the remainder of the flight. I couldn't find a way to make him feel comfortable. I tried everything. Paci, bottle, blanket, book, bear…nothing. Just thrashing and screaming. Back arching. Total terror. So what did I do? I just sat there and cried with him. My poor family tried to help, but they were occupied with the other two. I was his mom, I should have known what to do. I didn't. So I just cried.
The stewardess could sense my anxiety and gently took him from my arms and told me to just relax. She took him to the back of the plane so he could here the hum of the jets. I don't know her name, I can't even remember what she looked like…but she is my angel and I will never forget her. I took a deep breath and I did what any stressed out, self respecting mom from California would do and had a glass of Chardonnay.
I took my time, enjoyed it, gathered my thoughts and finally got the nerve to go to the back of the plane and get my little guy back. He wasn't asleep. He wasn't happy. BUT I had recharged AND the plane was about to land! I don't think anyone was happier to be home then Jack!

p.s. wish us luck….we are about to do this again this summer!

Beautiful Chaos

When I say that I don't remember the first two years of the twins' lives, I am being absolutely serious. So much so that on my 32nd birthday, someone (I was so drained, I still cannot remember who) asked me how old I was and I said 30. No joke.

Those were the longest days, and somehow the fastest months. Every parent that I had ever met, would say "cherish these days, they go by so fast." And all I could think in the moment, was "Thank God." I love sleep, I missed sleep. I mean who doesn't love sleep? I'll tell you who. Newborn twins. They don't love sleep. Praise Mary and all the saints, because Nolan was a great sleeper, otherwise I really would have lost it. 

But of course, all those veteran parents were right. You magically forget changing 30 diapers a day between your 3 babies. Or when your entire family gets the stomach flu...um yeah, that's right, all three babies and momma! (Daddy was a champ that week)! You somehow forget….well, that one took a couple weeks to get over.

Everything seemed exhaustingly perfect. The babies were all growing, gaining weight and developing. Neva's strength and charisma really made us forget that anything was ever wrong with her. That little girl is a force, with a killer personality! Nolan was really starting to talk up a storm and embracing his brand new role as big brother. We learned that Jack was born with low tone, something he would grow out of, so we were told. As far as we knew, he had springs in his legs and was capable of doing amazing yoga tricks practically from birth. Did I mention that he rolled over while still in the delivery room? Yeah, he was maybe a minute old and decided to just roll over! Ridiculous! 

We knew then, and still believe that this kid would be destined for greatness. Obviously, Nolan and Neva could rule the world as well. Jack could just do it while in "cobra position"!