michelle martin on the reality of parenting special needs twins with TTTS
meet michelle,
a mom to preemie twins who are survivors of Twin to Twin Transfusion Syndrome (TTTS). I found her through the Instagram Explore page and have been following her family ever since. She’s incredibly fearless and honest when it comes to advocating for her boys and raising awareness, and I hope you find her as inspiring as I do. 💛
Hi Michelle. Tell me about your story.
I’m a first-time mom, and first-time TWIN MOM (!!!). I’m also a marketing agency brand strategist and freelance writer. When we found out it was twins, I felt so overwhelmed and didn’t know where to turn! There are a lot of great sites out there for info, but for me, I wanted to share stories and tips from our daily life – just one mom to another.
Then things took a turn from light-hearted fun to serious business and my new mission turned into advocacy.
Since being diagnosed and delivering my twins early at 27 weeks due to TTTS (Twin to Twin Transfusion Syndrome), I am dedicated to raising awareness of this condition that affects identical twin pregnancies as well as the conditions my boys have endured as a result of their prematurity caused by TTTS.
Our boys are truly miracles (you can read their birth story here). Axel suffered a Grade 3 and Grade 4 brain bleed, and Jaxon suffered a large bilateral Grade 4 (the highest severity) which resulted in post-hemmoraghic hydrocephalus, with him undergoing 3 brain surgeries in his first 60 days of life. (And 4 in his first 10 months.) They both also have PVL as a result of this brain injury, cerebral palsy (Axel is right hemiplegic and Jaxon quad spastic), and Jaxon is severely visually impaired (CVI). You can read more about Axel here and Jaxon here.
Both boys also developed ROP eye disease requiring Avastin injections and laser surgery, both are fed by G-tube feeding tubes, Axel has chronic lung disease, and a few other smaller concerns such as feeding difficulties, severe reflux and oral aversion to bottles.
We were told both boys will have mild to severe levels of disability as they grow up. We choose to believe they are here for a reason and will do great things, whatever their level of abilities turn out to be. We can’t wait to watch them grow into the men they’re meant to be.
After 147 days in the NICU, we finally came home in September 2018!
I’ve been sharing my story on my blog and Instagram, and it’s not Instagram are not always full of positivity because I try to show the real struggles of parenting two special needs children, without much support. But there are still things about it I don’t talk about, too. It’s difficult, but it’s the life I’ve been given. ❤️
I am genuinely in awe of your raw honesty - you are so transparent in the way in which you discuss the boys’ medical problems and aren’t afraid to say, “This is the reality. It’s not just about being positive, this is what we are dealing with.” Have you faced any backlash for not always being completely optimistic or positive, so to speak?
YES, I’ve received A LOT of backlash. From both family and friends and random strangers on the internet. I get messages regularly with mean comments or saying that I do it for attention, I’m exploiting my children, etc.
There’s a difference between attention and AWARENESS, which is my goal. Awareness that not every “mom life” story out there is Target runs, wine, messy ponytails, and complaining about teething. Being realistic doesn’t mean I’m not grateful for my boys, because I am, but I’m not someone who can just keep my truth inside.
Also, for every crappy message, I get like 500 amazing ones from such nice people!
Do you ever not want to share, or feel burdened by it? Or has social media created a virtual support community?
Sometimes. There are definitely things I haven’t shared and don’t talk about publicly in our life. I just think some things are private, and some I just don’t want to talk about - mostly my own mental health and the PTSD/anxiety from the complicated pregnancy and NICU and all our medical things. So sometimes I don’t want to share, but most of the time, I really lean on the support I’ve found through Instagram. It has truly been life-saving for me to see other moms like me, with kids like mine, and learn from them and connect with them.
How do you stay strong amidst the amount of adversities you face, especially those that include medical professionals? On Instagram, you’ve talked about miscommunications and feeling like you aren’t always taken seriously.
Some days I am, some days I’m not. It’s a battle every single day to just keep going.
You recently traveled for a two-week intensive physio program, known as CME/ Medek. What was that experience like? What was it like seeing real progress in such a short timespan?
OH BOY. It was INTENSE. In the best way. We had only ever taken the boys out for a few walks and once to a restaurant for brunch with friends, so travelling across the country was super scary, especially with me needing to pump on the plane too and all that anxiety. But it was so worth it. From the very first day, we felt like we did the right thing (and spent all this money for a good reason, lol). I was blown away by their growth and abilities that these therapists could coax out of them when others on our medical team at home don’t even try. It completely changed my outlook on things and also has made me a stronger advocate. I was getting weary of fighting for so long with nothing accomplished so far, but now this renewed that fight in me to keep pushing for MORE for my boys.
What’s next for the boys as far as continuing therapy at home or returning back for more therapy?
So, I do CME exercises with the boys every day at home (plus our OT, vestibular and feeding exercises, too), and have just signed the boys up for weekly private physiotherapy locally, and we will be returning to Toronto for another intensive program as soon as we can afford it again. It’s a lot. We’re looking at about $25,000-$35,000 a year at this rate which is not money we have. We have been very blessed with those who have donated to our GoFundMe which has taken a lot of pressure off, but the future financial worries are one of my biggest stresses.
[To donate to the Martins’ GoFundMe, click here.]
How do you find strength/ courage when facing the unknown or find yourself feeling overwhelmed at times?
I try to remember tomorrow is a new day (so cheesy, I know). I also try to get more sleep or do something for myself (like get a coffee, which is my big indulgence these days). It doesn’t always work out and often I spend days at a time in such a funk. Sometimes it is just overwhelming and there’s nothing I can do about it.
Tell me a little bit about Axel and Jaxon’s personalities, or the “little things” you’ve picked up on with them.
They are SO different! So, we call Axel our little emoji because he’s so expressive. He’s always moving, smiling, has his eyebrows all raised up, and shrieks in excitement all the time. He is such a character! Like he will fart and then laugh at it and then stare at me like, “Isn’t that funny?” It’s ridiculous. He’s a class clown, for sure.
Jaxon is so, so sweet. He does cry a lot from the reflux but when he’s happy and has a comfortable tummy, he is so cuddly. He is happy being held for hours and hours. He loves being talked to and the dumb songs I make up, like singing “Smiley J” to the Spiderman theme song. He has a huge smile that takes up his whole face. We also think he likes the finer things in life: bubble baths, leg massages (for his tight muscles), super soft clothes, head massages, foot massages. We joke that he has expensive taste. But seriously, we have this bamboo onesie we were given and when I put it on him, he sighs.
They’re just hilarious and crack us up!
When it comes to raising awareness for TTTS and post-IVH hydrocephalus - what can people do to help out and get involved?
Just know those things exist, because most people don’t! Also, donate to the Twin to Twin Transfusion Syndrome Foundation and the Hydrocephalus Association. Their research and advocacy is much needed for these conditions.
Not gonna lie, I genuinely don’t know much about how Canadian health care differs from the US system, but is the Canadian system supportive of children with special needs, or are there deficits that needs to be addressed and made known?
MAJOR deficits. Our system is wonderful for medical things like doctor visits, surgeries, hospital stays, etc. We don’t pay a cent for anything. Our whole 5-month NICU stay, 11 surgeries so far, 26 specialists and clinics - not a cent, and excellent doctors. All that is perfect (or, close to). Waiting lists are a bit long often, but nothing’s perfect. It’s still good.
The problem is in the community. If you’re seen at a hospital or are inpatient, you have resources, specialists, care. But being at home, it’s sorely lacking. There are things in place like public therapies, but the system is so broken. The individual therapists and doctors are caring people, but they have hundreds of kids on their dockets and no time, outdated information, and often just an attitude of, “He’ll never walk/do this, so don’t bother trying.”
Maybe they see 99 kids with the same diagnosis that don’t walk, but it doesn’t mean you shouldn’t try with the 100th kid, too. They deserve it.
Really the only option for development is to go private, which is very expensive, especially for twins, of course.
What should people know about families with complicated medical conditions?
There’s so much to say here… it differs for everyone, really - what they want to share or what could potentially offend them, etc. There are some basics I’ll say off the bat. For preemie parents, don’t say stupid stuff like, “Oh you’re lucky, I was sooo uncomfortable when I was 35, 36, 37, however many weeks pregnant!” No one is lucky to deliver their baby early.
Or things like, “My sister’s friend’s boss’ cousin’s dog sitter’s aunt had twins and they were early but they’re totally fine now so yours will be too!” or “Those feeding tubes look convenient, you don’t even have to hold a bottle!” … I could go on. You get the idea. Don’t be a dick.
I think the most helpful has been when people genuinely want to hear about the boys and their challenges (but also just about them). I love talking about them, obviously.
My best advice is if you don’t know what to say, just say something like, “That sounds so hard. I’m sorry you have to deal with that.” Or along those lines. Just sit in the discomfort with that person instead of trying to say something to cheer them up.
What is the biggest lesson motherhood has taught you?
I think about how much time I wasted on stupid stuff before I had kids! LOL. Seriously.
I wish I would have LIVED more, done more, not been so focused on things that don’t matter. I used to be that girl who was so insecure - I couldn’t go to the grocery store without makeup on. Now I go out looking like an actual troll regularly. I just don’t care! Life is too short and time is too precious to spend it always made up (though I still love makeup!).
Now, what does a typical day look like for you?
Sooo much! Haha. I plan to wake up for 7:30am but often it’s much earlier - 4am, 5am, 6am, etc. if Jaxon is pukey. I get the boys downstairs and feeding for 8am, which takes 1.5 hours (and I pump). I feed the dog, then it’s 1-2 hours of CME exercises with the boys, OT exercises, playing with them, and I usually try to fit in a quick shower, too. Then time to feed them again (1.5 hours), and I pump. Then more physio, reading a book, playing, whatever the day goes like. Sometimes it’s more cleaning up puke and calming crying babies than doing any kind of meaningful activity. My husband gets home, then we put them to bed and I take our dog for a walk (at least an hour), then make dinner and by then it’s around 8-9pm. My husband then goes to bed; sometimes we watch an hour of TV. We feed the boys at 8pm and midnight, so I am up doing that, although lately my husband has been finishing the midnight feed most days so I can go to bed around 12:30am instead of 2:30am. It helps.
On days with appointments, it’s all that plus waking up super early, tube feeding on the go, hour-long blood tests, exams, etc… I’m exhausted by end of day. Plus, there’s like cleaning my house, laundry, washing dishes, stressing over milk production, etc.
That’s a lot! What is one thing everyone should know how to do?
Research!
Lastly, but really importantly, tell me about you. You’re a mother, of course, but you are an individual, too.
I think it’s difficult for any mom to define her identity after having kids… just everything changes. It’s especially hard for me as a medical mom whose life is still 100% about my kids, whereas other moms of kids can get back into doing things they like after a few years, but my time keeps decreasing. So, right now I would say I do not have a separate identity. I used to be a freelance writer and work at a marketing agency; I used to have clients who relied on me, I used to love custom cars, art, movies, going out, history, reading… I don’t do any of that now. I don’t get much time to myself and if I do, lately it is spent doing paperwork (mortgage renewals, tax filing, paperwork to get a bath seat for the boys which is like 700 government forms, organizing appointments, etc.). I am still working on finding my new identity but it’s not going well so far to be honest!
seven question with michelle martin:
I can’t go a day without… COFFEE.
Everyone should read…“We” byYevgeny Zamyatin
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Everyone in their 20s should...not worry about being such a grown up and just live a little
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What the world needs right now is... to chill out and stop chasing stupid promotions and profit margins and mindless work and figure out a way to stop turning ourselves into a dystopian prophecy.
One way to spread love is... the small things! Have patience with the slow person in line in front of you. Remember you don’t know everyone’s story. Be kind. Don’t judge. Make jokes.