Two years ago at this time I had no idea how much my life was about to change. I mean, I had some idea considering I gave birth just a few hours prior after a spectacular epidural after checking in the night before to be induced as a precaution related to findings on the ultrasound.
Right now, two years ago around noon, Connor was off being checked out. He was having the ordinary newborn exams, but he also had a cardiac exam by a specialist due the abnormalities found in his heart ten weeks earlier. They had never grown or become problematic, so by the time ten weeks went by, Chris and I thought it was some flukey thing that would require monitoring, but nothing more.
I did not know that in a few hours Connor would begin seizing, or that he wouldn’t go home for 37 more days.
I did not know we would be returning for brain surgery in four months.
I did not know he would develop infantile spasms in five months.
I did not know he would be developmentally delayed.
I did not know that as I had walked around for the first 30 weeks thinking, “lucky me! No morning sickness!” that chromosome 16 had mutated right away resulting in the later development of heart rhabodomyomas and brain tubers.
I did not know what tuberous sclerosis complex was.
What I know now is that Connor is awesome and funny, loves books and is the coolest, most adorable two-year-old on Earth.
Glad I couldn’t make it down there today. I wouldn’t have wanted to watch this celebration in person. I’m so sorry for those parents that did have to see it live. A live stream was more than enough for me. I cannot begin to express the countless hours, time and money (parking, travel, childcare) that these parents put into this. Representative Allen Peake did everything he could and for that we are thankful.
Short version — most of which I stole from someone on Facebook — because I’m tired, ticked off and feeling a migraine coming on:
The Senate refused to pass HB 885 unless an autism insurance bill was attached because the House refuses to vote on the autism bill alone. Senate passed HB885 with the autism bill attached, then sent to the House who refused to vote on it with the attached autism bill.
Then late tonight, with HB 885 stalled in the House, the House sent SB291 (already passed in the Senate and unrelated to HB 885) to the Senate for a vote with the HB 885 language included. Senate refused to vote on SB 291 because it did not have the desired autism language.
And with that, the state of Georgia made it clear that it does not care about kids whether they have epilepsy or autism. But they do care about their end of the night paper party!
[Update: Judson Hill stepped down from the state senate in 2017 to run for the the seat left empty by Tom Price, who accepted a role in Donald Trump’s administration. Please read this if you are considering voting for him]
Dear Senator Judson Hill,
I am shaking with anger right now. The Georgia Senate just voted moments ago on HB 885, the medical cannabis bill. As it was discussed, my son’s 12-day seizure free streak ended at my feet. The bill passed 54-0. Two people didn’t vote. Where were you?
You have constituents that have tried to reach you for months. You have blown us off. You have tweeted and posted about your work on on SB 98, a bill to prevent healthcare plans from funding abortions. But you are silent on two bills that help children who have already been born. Two bills to benefit children: one bill to make insurance companies provide coverage to children who need therapy due to an autism diagnosis and another to help parents obtain a medicine that could help children with severe seizure disorders, and you did not vote on either. Why? Clearly, you have constituents that want to be represented. Perhaps I’m outnumbered? Maybe you heard from more people that didn’t want you to support these measures than did support. In that case, you didn’t represent them either.
I first e-mailed you on January 9. I did not hear from you, but given that the bill started in the House, I figured there was time, and that I’d hear from you when it became a Senate issue.
I e-mailed you again on January 31.
And February 6.
And February 24 in regards to SB397–the autism bill you didn’t vote on.
And March 7. Twice.
And March 11.
Plus an e-mail from my husband.
On February 5 we had a scheduled face-to-face meeting. I came down to the Gold Dome with my son and arrived at your office at the scheduled time. You were not there. You had not come in yet that day. No one could tell me when you would arrive.
On March 10, I attended your town hall meeting that you scheduled. You did not show up.
I tweeted you on several occasions:
March 8
and March 11
and March 13
and March 19. Twice.
I have never received any response from you whatsoever. I do not know of anyone in the district that has, and I won’t even get into how many times you’ve been contacted by others I have talked to. My efforts to reach you pale in comparison to the efforts of another nearby family who has a far more dire situation.
I guess you can afford to treat your constituents that way when you are unopposed.
But someday you won’t be, and I can’t wait. I will be there and I will be vocal.
Sincerely,
One of your many irrelevant constituents
Update:
I finally sorta kinda made contact with Judson two years after I posted this letter. Apparently, the key to getting his attention is his wife. Rep. Allen Peake had posted on his public page about his disappointment in the failure of the 2016 Georgia legislature to expand medical cannabis. Senator Hill’s wife commented and the following thread resulted on that post.
I refrained from pointing out that the family he spent time with was the one that received the most press this year.
But this is how he handles “problem” constituents.
Remember that Connor kid I used to write about before politics, politics, politics? He’s still around and doing great.
Connor is getting closer and closer to walking. We can now hold both hands as he takes forward steps to us. At his last physical therapy session, his therapist decided to remove the seat from his gait trainer/walker. I thought she was nuts. I thought he’d slump down with the waist support under his shoulders and refuse to cooperate, but he maintains standing and he’s moving better than ever. We had it locked so he couldn’t turn but could go back and forth in a straight line. On a whim the other day, I unlocked the ability to turn and though he careened a little out of control into furniture and the walls (guess we will paint this room last) like Lindsay Lohan behind the wheel of a Mercedes, he had a blast trying to get around.
The best news is this:
Though I started tweaking his diet back in December, we started the full-on modified Atkins diet around the second week of February. We haven’t seen a seizure since March 7. Today is the 19th.
The magic of some whipping cream and olive oil. If only dietary therapy worked for everyone. Thank God. Colorado looks gorgeous, but I do not want to take on refugee status while we wait for the rest of the country to catch up to 2014.
For those of you that have wondered, yes there is a Mixed Up Daddy that walks the path of life with Mixed Up Mommy. Probably more astonishing to some (including my family and close friends), I even can write! Although let me start by saying I don’t write nearly as well as my wife.
Also, before I get into the true reason of this post, let me just say how proud of my wife I am, not only for writing this blog and educating so many on TSC and our journey through it, but also for being an incredible wife and best friend to me, and of course the best mom ever to Connor (no offense to the other moms out there!). I also want to thank the little man himself, Connor. He is such an inspiration to me, and I only wish I could have a little bit of the strength and courage he shows every day.
Now on to the reason for my first foray into blogging — a certain state representative here in Georgia. As I am sure you are all aware from reading Becky’s blog, there has been a push in 2014 to legalize medical cannabis oil in Georgia — oil that could potentially not only help with the quality of life for so many like Connor, but could potentially be lifesaving. It goes without saying how wonderful it is to have State Representative Allen Peake of District 141 who was willing to champion this cause for so many on our side. He did this knowing it was going to be a tough fight and one that could potentially end his political career. It is refreshing having politicians who, even though they may lose their political career, are still willing to take on the hard issues because it is the right thing to do! I applaud you sir!!! I only wish we had more like you at every level of government.
But that isn’t the representative I came to write about. I also didn’t come to write about my State Senator who, although he is in the state senate to represent myself and the rest of his constituents, never returns emails, voicemails, Twitter messages, stands you up for appointments, and doesn’t even show up for his own scheduled town hall meeting (and let me add this is not just my experience, but dozens of his constituents’ experiences). Nor am I here to write about how wrong it is that our government (both at the federal and state levels) take off every other year from tackling the hard issues because “it is an election year”. Again, there are some great politicians out there that don’t do this, but I am sick of hearing this. You are elected to represent us, each year and every year. I am also not here to tackle the comment made on the floor of the Georgia House of Representatives during the debate on HB885 by a freshman politician that when he took office he was told by other politicians that freshmen congressmen and congresswomen should be seen and not heard. Since when do those who elected a new member to represent them suddenly not have a voice? To me this is nothing more than bullying of politicians by other politicians. Thankfully the above referenced representative did not listen to those politicians, but instead gave a great speech and represented those from his district. On a side note, don’t get me started on the all too common practice in politics of “the more you donate, the more you matter and get access.” Maybe that is how I can get access to my state senator?
Okay, so maybe I got to a few items, just not in the detail I could have.
No, I am here to talk about, and give my opinion — no one else’s — on Georgia State Representative Sharon Cooper of District 43. I did not know who Sharon Cooper was before this process as I do not live in her district and did not get involved in state politics. But after this process, oh wow! Now I readily admit I am biased when it comes to the topic of cannabis oil, but my issue with Sharon Cooper isn’t so much on this topic, but the way she has conducted herself during this process, and I can only assume, how she conducts herself in general down at the Gold Dome (the Capital in Georgia is referred to as the Gold Dome). I also will say that she voted for this bill twice — once in committee and once in the full House vote. But looks can be deceiving. In my humble opinion she has actually been trying to kill the bill behind the scenes. I will get to that in a moment. Some though will say, “Why would she vote for the bill if she didn’t want it passed in reality?” Well that is where I question how she does things. Based on parents who were in the House during the vote, she was one of the last to vote. Again it is just my opinion, but my guess is that she was seeing how the vote was going, and in “old school politician” mode, chose to vote for it as it isn’t easy to be a “no” vote when the vote is 171-4, but it is easy to hide as a “no” vote if the vote were say 104-71. (I know old school dirty politics, I was born and raised in Chicago, where that was invented). No, an “old school politician” would vote for it (knowing that is what the public would see), and then behind the “closed doors” of the capitol try to kill the bill (luckily the doors of the capitol of Georgia are not as “closed” as she thinks). My issue here is that she has a responsibility to her constituents to show them how she truly votes on the issues, not resort to the all too common politics of today of “I will do whatever I need to do to get reelected”. I have no problem with my elected officials voting contrary to my opinion on issues, as there is no way we would see eye to eye on every issue. We should not have to ask that they vote accurately though so we can actually make an informed decision during elections. We deserve that much!
Now you may ask, “How was she trying to kill the bill?” Behind the scenes at the Gold Dome she was passing out a flyer on the “Truths” (my wording) of HB885, yet there were several facts that were wrong on it. I am not sure if she just got the facts wrong and didn’t do the research, or if she did this on purpose, but either way that is unconscionable, and although it is common in politics, has no place. Let’s also not forget that her position on some items is ever changing. Take Epidiolex (a pharmaceutical cannabis product that is currently going through FDA trials and shows some great promise) for example. At her committee meeting there was testimony by a woman — a family values advocate, not a doctor –who said Epidiolex could be here in Georgia in 30 days, yet there was also testimony by a respected neurologist (Connor’s doctor, and many of the other children that could benefit from cannabis oil) who said he was in the process of getting DEA approval to run an Epidiolex trail, but it was a long and arduous process. So who does she back during the meeting? The non-doctor testimony — never mind the fact that it was a lie. She would correct that in later speeches and comments though. She could have also found out more about how it is such a long process by watching the show Weed 2 that recently aired on CNN and was done by Dr. Sanjay Gupta. Of course this is the same congresswoman who called into question Dr. Gupta’s credibility during her committee meeting. Never mind Dr. Gupta is a well respected neurosurgeon, assistant professor, and journalist. She also cut off more than one parent during their testimony, including one that she would later reference in her speech on the House floor regarding medical cannabis, although twisting and misrepresenting his story to fit her ways.
Representative Cooper’s big idea on the subject is that we have an alternative FDA medicine — Epidiolex — at our disposal. Unfortunately that medicine is not readily available and we have no idea when it will be (most likely years based on other FDA timelines). Currently it is only in trials, very limited trials (we are talking 125 people, and based on trials that are trying to get up and running, at most maybe 2000 people, but probably less, in the future). She also has said that Children’s Hospital of Atlanta has told her they are open to do studies on Epidiolex, yet when contacted, CHOA said they have no interest in doing a study on Epidiolex at this time. I have no idea why the parents are getting different information than Representative Cooper, but we certainly aren’t being told what she says she’s hearing (maybe “old school politics” again). What do these parents and adults do in the meantime? Also, let me point out that most patients have exhausted all available FDA-approved meds that are out there for their conditions. Let me also mention that although I am sure there are some incredible people working for the FDA, let’s not forget that the top levels at the FDA are political appointees, and that big pharma is an incredibly powerful lobby and big contributors to political campaigns. Let’s also not forget the side effects that come with the FDA-approved meds that are taken every day — possible vision damage, kidney failure and liver damage to name just a few. Or that there have been FDA-approved drugs that have then been recalled.
I am digressing though. There are some incredible parents we have met along this journey that are a lot better at giving examples of her lies, and if they cannot get them published in the Atlanta paper, I am sure my wife will give you a forum to get your message out. Since the Atlanta paper allowed an editorial by Sharon Cooper though, I certainly hope they give “us” a chance to get the truth out there. Again, this is about her shady politics, though. This is what the general public has grown sick of in America. We expect our politicians to act in a better manner. I only wish I lived in her district to run against her. In Georgia though, we are sort of set-up where the common man can’t run. We only pay our politicians less than $18,000 a year (no, I am in no way advocating for higher pay), so unfortunately unless you are a business owner, or independently wealthy, it is almost impossible to run as you can’t raise a family on that pay. As great as my company is, and they have been incredible throughout our whole journey with TSC, I am pretty sure they are not going to let me take the first three months of the year off. And how I would love to run against our state senator so that everyone in our district could be heard and represented. I deserve to be heard and represented; we all deserve to be heard and represented!
Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.
Janea and Haleigh left for Colorado yesterday. Haleigh is the little girl for whom HB885 is named “Haleigh’s Hope Act.” The awesome Rep. Allen Peake met her and immediately began his crash course into the world of medical cannabis and CBD oil, pushing this Georgia bill with everything in him. But Haleigh’s declining health means she can’t wait. Her father must stay behind in Georgia because of his job.
HB885 has passed the senate committee but with major changes. Cultivation is out. Basically, it provides legal protection to a person caught with CBD oil. It does not help us obtain it. This was always a hurdle even with cultivation (there were different issues surrounding that). You’d have to get it in a legal state and get here without being caught. Frankly, places like Realm of Caring are not going to sell it to you knowing you plan to cross state lines against federal law because that puts them in danger of being shut down by the DEA. It’s important to understand that this bill, even if passed on the senate floor, signed by the governor and made law, would not allow everyone to run out and get it for their kids. It does prepare our state, however, for a change at the federal level. If the feds reclassify it with the DEA — as they need to — we are ready to go. And hopefully, passing this in such a conservative state will add more pressure to the federal government to get off their butts and help people.
Another twist is that a separate bill is now attached to HB885. The chair of the senate committee, Renee Unterman, has been trying to pass a bill for five years (Ava’s Law) mandating that insurance companies cover treatment for autism (Georgia is one of a minority of states that don’t require autism to be covered). A compromise bill that increases benefits up to age 6 is now part of a package with HB885 called the Kid Care Act. The autism bill has also been tacked onto HB943, which would prevent insurance discrimination over certain types of cancer treatment. The reason is that the autism bill alone would have to go through subcommittee in the House, and thus far, they haven’t been willing to hear it. By tacking it onto bills that have already passed the House, it bypasses the subcommittee when it goes back to the House for approval for the change.
Now the bill must go through the Senate Rules Committee and then go to the Senate floor for a vote. Then it goes back to the House for approval. Last day of session is March 20. Nothing like going down to the wire! Once again, if you haven’t e-mailed your Georgia state senator yet to support HB885, you can find out who yours is at openstates.org.
Also of note are two op-eds in the AJC today. Eli Hogan shares his experience living with Crohn’s Disease and it is a great read. It is followed by a counter-point from Rep. Sharon Cooper. As you read it, please keep in mind that she voted to pass HB885 twice. First out of committee, then on the floor. I would also urge you to read some of the excellent comments from parents below the essays.
If you missed Sanjay Gupta’s follow up to last year’s special Weed, you can find it here. The original is here. Anyone who cannot invest the 45 minutes it takes to watch at least one of these has no right to question the people who are fighting for these changes.
So much excitement over the last couple weeks. Where to begin…
HB885 passed the House vote 171 to 4. It now awaits a hearing in the Senate. If you haven’t yet contacted your Georgia state senator, please do so right away. If you aren’t sure who it is, check here.
Chris and I flew up to Washington, D.C. last week to meet with our representatives about the continuation of funding for the Tuberous Sclerosis Complex Research Program (TSCRP) which is part of the Congressionally Directed Medical Research Program (CDMRP) in the Department of Defense (DOD). Yes, I am drowning in a sea of acronyms. Quick quiz: how many of these acronyms do you know?
(Answers: angiomyolipoma, tuberous sclerosis complex, subependymal giant cell astrocytoma, lymphangioleiomyomatosis, subependymal nodules, cannabidiol, Charlotte’s Webb, Food and Drug Administration, Tetrahydrocannabinol, Drug Enforcement Agency, Realm of Caring, vagus nerve stimulator, complex-partial seizures, tonic-clonics, this is the name of a pharma company (I actually have no idea what GW stands for), investigational new drug, lennox-gastaut syndrome, Health Insurance Premium Payment Program, Katie Beckett, Children’s Healthcare of Atlanta, physical therapy, speech-language pathologist, music therapist-board certified, modified Atkins diet).
That fact that I know those in no way makes me smart. It just means I can do even less math than before because I’ve had to drop everything number-related dating back to second grade to make room for it all. To be honest, that only equates to a couple of years. It was all downhill from fourth. Also, don’t ask me to pronounce most of them.
Now back to DC…(see how I did that?) Volunteers flew in from all over the country and we swarmed the Hill in our sexy blue jackets. There aren’t words for how excited I was to discover these had thumb holes. I love thumb holes.
Fellow TSC mom Reiko and my hubby Chris helped me hit all the Georgia congressional offices.
We secured promises of support from the offices of John Lewis, Hank Johnson and David Scott. The meeting with David Scott was my favorite as I had no expectation that we’d be promised support on the spot like that, and the staff member we met with immediately began asking questions about what was going on back in Georgia with HB885 when we mentioned TSC’s link to seizures. It was awesome to know they were talking up there. Don’t worry, fearless trainers from the previous evening’s dinner, Reiko got us right back on topic 🙂
Chris and I even got some time the first day to explore so we went to Ford’s Theatre and the house where Lincoln died. His blood-stained pillow and the tiny gun that killed him are on display. The balcony is preserved as it was, and I was actually surprised to learn that it is a working theater. We did some more walking around including a photo op at the White House where our phones died simultaneously only letting us each get one shot. I don’t want one more stupid iPhone model coming out until they can make a battery that lasts more than five minutes.
The last night we were there was the Volunteer Recognition Dinner. Four people were awarded a Franny, the volunteer of the year award for 2013. Chris had broken down and told me he nominated me a couple weeks prior — so very sweet — but that did nothing for my slow processing as one of the winners was described as having a son Connor’s age, a blog with the same amount of hits and followers as mine and involved in similar activities. I thought, man, who is this person leading such a similar life? Oh it was ME! ME!
Then, like a jerk, I forgot to thank Chris a la Hilary Swank and Sean Penn who ended up divorced after their Oscar acceptance speech snubs of their significant others. He swears it doesn’t matter, but just in case: THANK YOU, MY AWESOME HUSBAND!
Well, if you haven’t read it yet, check out my post from Sunday here. It is now my most read and shared post of all time. I’m thrilled to help get the message out on the potential benefits of medical cannabis. Though I can’t help but wonder why you all aren’t as intrigued when I blog about my repetitive dreams of my teeth falling out or weight loss powder shakes…
With Chris Hawkey.With CEO and President of the TS Alliance Kari Rosbeck.Grandma and Grandpa took Connor to aquatic therapy while we were gone. We did it! Four whole nights away! Guess we’re ready for the islands…
I’ve posted before about Hunter, an eight-year-old boy from Georgia, whose family relocated to Colorado several months ago to try and treat his severe epilepsy with cannabis oil. Previously 12 FDA-approved meds, the ketogenic diet and a surgically-implanted VNS had failed to make him seizure free. He was not a candidate for brain surgery. Some of his meds made him sleep constantly or scream. Here is an update.
This non-psychoactive oil has made an incredible difference in Hunter’s quality of life. According to Mom, “His bad seizures (myclonic clusters) would happen almost daily before and last 5-10 minutes. NOW, he is averaging one a week and they are under 2-3 minutes. In the month of February he has had 4 so far. This is HUGE! His quick seizures used to last upwards of 30 seconds and happen 10-20 times a day. After a month or so we were still seeing them every day and several times a day but they were literally seconds and half the time we couldn’t tell if he was actually having a seizure. Now, after 3 months, we are hardly seeing ANY!”
But in fairness, we must address the side effects of this medication. Sure, it might help kids with terrible seizure disorders that are damaging their brains and ability to function and learn, but surely there are SIDE EFFECTS? Well, you’re right. There are. Here are the side effects Hunter is experiencing.
1. Increased eye contact and the ability to maintain eye contact.
2. He no longer needs Miralax and daily suppositories to go to the bathroom.
3. He is relaxed. His fists no longer remain in a clenched position with his nails digging into his palm, making his hands bleed.
4. After eight years of only being able to sleep on his back, he can now roll to his side and sleep in a new position.
5. He now rides the school bus since Mom no longer worries about him having a bad seizure on the bus.
6. There have been no calls from the school for EMS.
But I guess a few side effects are the price a parent must pay for giving their child quality of life. That and leaving your entire life behind in another state.
I have not used our Seizure Tracker app for three days. We have had a few seizure-free days here and there since I started tweaking his diet a couple months ago, but three days in a row isn’t so common and is pretty exciting. I’m not gonna get ahead of myself and say there won’t be future break-though seizures , but I’m so relieved to know diet therapy is truly helping. It does NOT work for everyone, so I’m thrilled that it is working for Connor.
If MAD does do the trick, it saves us from moving on to the more extreme ketogenic diet which would force me to become an organized planner, the absolute antithesis of what I am.
To be honest it hasn’t even been hard due to Connor’s delays. Since Connor is still a bit fickle about textures, he has never developed a taste for a lot of the stuff other two-year-olds have. He doesn’t eat chips and cookies. A good portion of his diet is is still pureed and I rely heavily on baby food portions of meat and vegetables. Since he’s picky about more solid food, I also buy prepackaged portions of chopped carrots and green beans that are soaking in water and softened for him so he can transition to more texture. I also buy boxes of chicken nuggets without breading and meatballs. Basically, everything is already portioned out with all the nutrition info on the side. So it’s easy to keep track of his allotted 10 net carbs a day.
I started tweaking his diet a couple months when we were trying to get in somewhere to start the ketogenic diet–only to discover most hospitals take months to get you in. For a long time I just reduced his carbs, but didn’t stick to a particular limit. I just avoided pastas and gave minimal fruit. It seemed to help a little, but seizures were still almost daily. As I read more about it, I started giving him half and half occasionally instead of milk. Then, a couple weeks ago, after checking in with a nutritionist, I started stirring olive oil into his food, and switched from milk to heavy whipping cream mixed with water. I try to spread his carbs and fat evenly through the day. There is no specific amount of fat required–just “liberal use.” To figure out the 10 grams of carbs, I just look at the nutrition info and subtract the dietary fiber from the carb count because those carbs don’t count. I bought book that goes in my purse listing nutritional content of food for the process of getting him to eat more table food. Then I went to Walgreens and purchased Ketostix. Those are used to periodically check his urine for ketones. If the diet is being done correctly the color of the strip should reflect moderate to large ketones. The first time he had small, so I worked on spacing out his fat intake and his last two checks revealed large ketones in his urine. Ketones are what is left behind when the body starts burning fat for energy instead of the glucose from the carbs most of us run on.
Checking the urine of a kid in diapers is super fun. A book had recommended using cotton balls to soak up urine and squeeze it onto the strip. The writers apparently haven’t had much experience with today’s super absorbent diapers because I have to tear through the lining and stick the strip into…whatever that stuff is that spills out of a torn up diaper. Things that would have made me vomit before a kid.
One of the first changes we saw a few weeks ago was that his random seizures during the day were significantly reduced. But waking up was still a big trigger for him. I knew I would see one almost every morning and after nap. But even those have reduced, and I have seen none for three days. He even woke up twice this afternoon–mid-nap and at the end of the nap. I watched closely. No seizure!
Plus, when he was weighed recently he came in at 30 pounds. Last time any med changes were made, he was 27 pounds. So we are seeing this improvement, even though his meds aren’t calculated at his current weight. It would be so amazing to get him off one, if not both, meds. Fingers crossed.
Here are some photos from Disability Day at the Georgia capitol the other day. Several parents went to represent HB 885, which we hope will pass and move this state toward allowing people to access the medicine they need.
I often question how it is that I’m handling things so well these days. I was a walking ball of anxiety for the first few months after Connor was born, and now I just feel so…normal — an adapted sort of normal — but normal nonetheless. At one point I even started questioning whether I was in denial, rather than just being adjusted. It probably helps that the second year of Connor’s life has been much smoother than the first. But I’ve seen a lot of online dialogue regarding birth and diagnosis stories. Some people have developed PTSD from the traumatic circumstances. Years later the thought of those circumstances still has a traumatizing effect on them. I don’t really think about it that much. Connor’s seizures started hours after birth, leading to a five-week stay in the NICU, so it was definitely traumatizing, but why is it that I’m able to just block all that out and not think about it, while others find themselves seeking therapy or suffering at the very thought. That’s actually what led to me wondering if I was in denial. I even Googled it (haha), but I think I’m too functional to qualify (of course, I found about eight other unrelated disorders I might have).
Chris recently spent some time going through some stuff in the office. When I went to bed that night, he had placed the buttons that Northside Hospital gives out to families when a baby is born on the table next to the bed.
And suddenly, I was crying. I used to be a big cryer, but I hardly ever cry anymore. So I was surprised by my reaction to the buttons. They made me sad that we didn’t get to have a normal start and it brought back the feelings of fear. I remembered asking for something to help me sleep –which they wouldn’t give me — and lying awake bitter that I could hear other people’s babies on the maternity ward crying in their parents’ rooms. I remembered how cruel I thought it was that I had to stay on the maternity ward at all. I remembered how I didn’t quite know what to do with the buttons at the time. I don’t even remember if I wore one. But I knew how excited I would have been about them had everything gone normally. I love cheesy stuff like that.
Acceptance or denial? I guess I’m somewhere in between.
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.
Mixed Up Mommy 