I asked for some questions on IG, you delivered, and here are my answers.
Is D in any pain?
Great question. We don't think she's in pain regularly right now. Unfortunately that won't be the case for the future. But I will tell you what I'm struggling with at the moment. She can't tell me or really even point out where something is hurting or bothering her. We went to lunch a few weeks ago at an outdoor patio at a table. She was fussing the whole time, whining and not eating much. I couldn't figure out what the matter was with her. Until we were done with lunch and I pulled her chair back from the table to get her out. I saw that her ankle had a deep red impression on it from the metal table leg, and realized I had pushed her chair in too far. I felt like shit. Things like this happen often; her foot is turned in a way that bothers her and I don't notice until I look her all over, or her fingers are caught in a little part of a toy she's holding and she's whimpering, but she's not even looking at her fingers, nor can say anything, so it takes me a couple beats to realize. I'm always worrying she has a UTI or a headache or her shoes are on too tight because she just can't tell me. I'm learning to understand her signs and cues more and check her all over to see what could be wrong.
Along with that she has her trips and falls. She's suffered a black eye before, and a sprained ankle and walked with a limp for a short while.
2. Has this changed her life experience? Is she still happy?
It's changed my idea of what her life experience was supposed to be, of course. I expected a daughter with a decent shot at a healthy typical full life, and she's not going to get that. But at this point, she doesn't know that. I have read of some BPAN girls who are on a higher cognitive level wonder why their body is failing them, and ask their parents what is happening to them when the regression hits, and the parents struggle with how to answer their daughters. That sounds awful. How do you tell your kid that they are going to lose all their functions rapidly? Do you even tell them that? So much I don't want to think about yet I think about it all daily, often hourly.
Is she happy? Yes. She's so happy, and satisfied by the simplest, sweetest things. Dahlia doesn't take anything for granted. She sees the beauty in another child's smile and laugh like no other. She squeals with HUGE joy every time we go for a walk, and she could sit on my lap all night excitedly reading with me if I allowed it. It's hard to explain, but similar to when you see a deaf child get his cochlear implants turned on for the first time - his pure joy, amazement and awe; she shows that in almost everything she sees, hears, touches, tastes, and it's wonderful to see the world through her eyes.
3. Is she really as sweet as she appears in your posts?
Hahahaha, not always! She does hit, bite, swat, and throw tantrums. But if she is comfortable, not overheated, feels understood and heard, then for the most part she is sweet, yes. She is almost always sweet around strangers and kids, just because she loves people so much. She does pull Teddy's hair a lot, but it's not out of anger, it's to get his or our attention, and she swats at his head or back, but again, it's to get him to play with her. She has bitten him and her cousin, but it hasn't come off as an aggressive thing, more of an exploratory "let's see if I can get a reaction, and also see what this feels like" thing. One thing that is super sweet about her is she LOVES babies, she approaches them in strollers a lot, and wants to touch them as gently as possible. She gets so excited by them and makes her sweet "ahhh ahhhh" words, which is her sound she makes when she wants to exclaim that she's being gentle or that something she sees is nice, cute, or sweet. If you want a hug from Dahlia, hold out your arms and go "aahhhh, aaahhh" and she'll come running.
4. How rough has this year been for you?
Well, I still believe 2019 has been my toughest year so far, when all my hopes and dreams for my family was shattered and I was told my daughter had this disease. This year has been a year of so many changes, growth, inconvenience, uncharted times, and unknown future. The biggest change was my industry has halted, trade shows and events are not happening anymore, so I'm not really working much. I'm home full time with Dahlia. Which was hard, especially at first. I didn't grow up with a stay-at-home mom, I also never wanted to be one. I knew it was going to be hard work, and it is. The days are long, you get so little time to yourself, every minute I have is dictated by Dahlia. If she goes down for an hour or two, that's my time, and it's great. But that time is dedicated to laundry, dishes, housework, emails, doctors and insurance fighting, the little work I do have, and yes, of course a little Hulu and Netflix, I'm no liar. But also, it's been a tremendous blessing to be home with her. We've grown closer than ever, which terrifies me. I rely on her now to get me through the days just as much as she relies on me. I love how much she needs me now, and we've gotten into a great routine. I used to travel for 5 days at a time and there were trips where I didn't even call home once. I can't imagine doing that now. I definitely "protected" myself more keeping a little distance from Dahlia, but being forced into this situation was something I needed, and she has long deserved.
Inconvenience is a controversial one. It's hard to talk about Covid, because this nation is so polarized, but here goes...
Dahlia likes to walk. And she is safest walking on open, flat surfaces. In addition to walking, she loves to people watch. So the thing we used to do a lot was go to outdoor malls. Now, as her mom who knows her child may stop walking in as soon as 10 years, I want to give her the opportunity to continue doing what she loves to do, as soon as possible. So I was delighted when the Downtown Disney District opened. We tried going one weekend but they wouldn't allow us in because Dahlia couldn't keep a mask on. We also were asked to leave a small food festival at a local theme park for the same reason. While I understand the rules, and before you look it up, yes it is legal for them to refuse us, it still sucks. As much as we're trying in therapy, so far she is refusing to wear a mask when we go out. We were supposed to go to Hawaii this year, and due to Covid (and as of this week the state is closed again anyway), we decided not to, and due to many airline rules we can't travel as a family anyway, because at this time Dahlia won't wear a mask. Thankfully, she is allowed at Target and other outdoor places without a mask, but that's not without some inquiries from strangers. I try not to judge these people, because if they are commenting out of concern of their own health and other's, that's fair and understandable. But a mother in the doctor's office snapped at Dahlia for getting too close to her and her children in the waiting room while I was signing papers, and I lost my cool and sure as hell snapped right back. I'm doing the best I can, with my two kids in the doctor's office, by myself. We have to be here, and my daughter won't wear a mask right now. She doesn't fit in her stroller, her wheelchair's not in yet, nor can she sit on any of these armless chairs in the room, so at that moment I wanted to tell the lady to shove it.
We'll be fine with this, and we want to be safe of course, but my only fear for the future is if the mask protocol will be a thing for years to come, and Dahlia will be expected to wear a mask at places like Disneyland when it opens and she'll therefore possibly miss out on things for a good while, and that will break my heart. Every moment she can feel good, happy, move, and explore is so precious. So let's get this Covid thing under control and fast, please.
5. You're a fantastic story teller! Talk more about your writing background.
Thanks! That's very sweet of you. I feel like more of a rambler than anything else, but I have always loved writing stories and opinions. My mom started a journal for me the day I was born and had me keep journaling up through my childhood. I loved to read, and I read the newspaper as much as I could when I was young, because I had decided I wanted to be a journalist. In high school I joined the school newspaper and entered a mentor program where I shadowed an editor for a large newspaper in my city. I had a run where I really wanted to become an editor and I learned all about the AP style guide, and took a publishing seminar and a speed-reading class. I loved examining the written word and marking things up with red lines and proofreading symbols. I was lucky enough to become a feature writer for CosmoGirl!, a national magazine for teens. I got two articles published, and was asked to become a contributing editor for the year.
Ultimately, I went to school for Journalism, but ended up in Trade Shows and Marketing. The meanest teacher I ever had was my mom (I was homeschooled for a while), and the meanest boss I ever had was a woman named Lisa, she ran a marketing communications agency I worked for. Both headstrong, very smart, outspoken women, who ran a tight ship and challenged me hard. Both told me I had talent, but they never let it get to my head, and they pushed me closer to my potential, while also giving me the confidence to speak up for myself and try new things that scared me. And when I say both women were mean, they weren't really mean, one was my mom so it's a right of passage for a mom to be called mean, and the other was a mix of Kathy Griffin and Miranda Priestley, so her cunning humor and smart wit canceled out her bitchiness.
I've been in events and trade shows ever since, and now have taken on blogging to raise awareness for BPAN. Most recently I've received the voluntary position of Social Media Director for the NBIA Disorders Association, which I'm very excited about.
6. What does Teddy know about Dahlia, and how will you tell him the whole truth of Dahlia's disease?
Tough subject, especially lately. Most recently, on a walk home from visiting neighbors, an older brother and his younger sister, Teddy asked for a little sister "like (said neighbor boy)". He's asked before for a sister that can talk, but this time he kept pushing, and said he wanted not only a little sister that could talk, but a little sister that could be his best friend. I tried to explain to him that Dahlia is his little sister, and even though she can't talk yet she will talk more one day, and there are so many things we can do with her. We often assure him that he has friends and cousins that he can always consider siblings, but this time he said he wants someone that will live with him "forever and ever" and he knows it's not the same.
He knows D's brain isn't "normal", that she wasn't born with all the normal functions as other kids her age, and he knows her muscles are not as strong. He asks a lot if she'll ever grow up, and that part is hard to answer. I say she'll learn more and more but will always be different. We grieve every day, every single day, that we have a daughter that will struggle so much and have her life cut short, and I know Teddy grieves too. He grieves that his life is not what he expected and I think he knows that our everyday life is a little harder than most kids around him.
Teddy is an amazing brother, and I know I've touched on that before. Even though he gets frustrated with Dahlia at times, he's the first to go hug and kiss her to calm her down during a meltdown, he points things out all the time that he knows she'd like, and he proudly introduces her to everyone we meet. He hands over his toys/ipad/remote control in defeat when she's having a tantrum and hitting herself because she wants what he has. I don't remember a time that he's ever flipped out when we've had to leave a place early because of Dahlia, and it's happened quite a few times. He finally got a real LEGO set for the first time last week, we've been putting it off for so long because Dahl puts everything in her mouth.
Teddy deserves the world in my eyes, because during this pandemic, and as he's grown so much this year, he's been so helpful to me with Dahlia. I am sure I'm navigating this whole parenting thing all wrong using his help so much and in turn rewarding him with toys and letting him STILL sleep in bed with us (yep), but for now it works and it really helps our grief (more on that later). Teddy has assisted with feeding Dahlia lunch while I fold laundry or am on a call. He's kept her occupied in the shopping cart, he's danced with her in the office while I've worked, and no joke, he's learned which debit card to pull out of my wallet and how to insert it, short of inputting my pin, to pay at the cashier. He does so much for himself now that I forget that he's 4 sometimes. He makes his own breakfast, turns on his own electronics, opens the car, hops in, even sometimes packs his own lunch. He's still scared of everything though, and we don't see that changing anytime soon, haha.
Regarding sleeping with him, and the grief. We probably spoil him rotten, yeah. But god, he makes us so happy. He's such a light, and truth be told, the easiest part of our lives. We're so grateful for him, and the levity and joy he brings us. And it almost feels like he's not just our son, although of course that comes first, but he's also our other teammate as we all rally around Dahlia and make this world work for her. The three of us curling up in bed together each night catching up on the day, reading, and watching TV after Dahlia goes down, is the only regular alone time I get with him now, and goodness, my heart and soul need it. I obsess and mourn daily that Dahlia has BPAN, and to have some alone time without wearing my special needs mom hat, with my typical kid, feels nice, and I forget about all the hard stuff for a little bit. And so far, he's a good kid. No issues at school, very few bad actions at home, and I haven' had to count to 3 yet when things don't go his way. Besides all that being for me and my feelings, I look at Teddy often and I feel awful for him. I had two typical siblings I got to torture and celebrate life with who are still here today. He'll still get to do that yes, but it won't be the same of course. And I dread the day we tell him his sister will regress and pass away early. And given the timeline, he very well could lose all three of us around the same time. Granted, he'll hopefully be established with a family of his own, and well-prepared, but it's still got to be a blow. But at this rate, he may still be in our bed when the time comes.
7. What are the three top most difficult things about having BPAN?
I'd say at the current moment, these 3:
1- D's physical getting around, and movement. She's huge, and can't walk up or down steps without help, so she needs people for that. She also can't walk too steadily by herself period, so you always have to walk close and hover a bit. At any point she'll just slightly catch her foot on a weed sticking up in a cement crack or step on the most smallest rock and fall hard. She can't pull herself up to stand, get herself to sit, nor lift her own body. So all maneuvering has to be done by us. We went on a staycation a couple weeks ago and she slept in bed with me, which was difficult because it wasn't up against a wall. I had to make sure she wasn't going to move to the edge and fall off, so basically I held her in the crook of my arm all night. The mattress was super "cloud-like" and deep so she sunk into it and could not roll over if she wanted to. She was fussy about that, and I'd have to grab her by her waistband and swing her over to give her time on her side or her back. Picking her up to get in and out of chairs, then correcting her when she'd slump, getting her in and out of the pool, all those factors were tough. She and I left the vacation early, leaving Teddy and BW behind to enjoy the last day to themselves.
2 - Would be her not being able to communicate her needs and wants. She gets very frustrated. Luckily she can point at her choices and that helps. When we finally understand her on something difficult it's like the clouds have opened and we see Jesus, it feels so great.
3 - Would be maybe temperature regulation. When we're out and if Dahlia gets overheated, she is literally burning hot to the touch and nothing cools her down. She's miserable and it's really tough to get her back down to a comfortable state. I think it's a toss up between this and her tantrums when she's upset/impatient. Both are up there!
8. What is the cutest thing Dahlia does or say?
Well she only says one thing now, and it's "yeah", but it is SO CUTE! I will ask Teddy or BW a question at home and I hear her little raspy voice go "yeah!" answering for them.
The very cutest thing she's picked up lately is her ballet moves. She loves watching Emma on the Wiggles, and she's a ballerina, so Dahlia has taken to standing in front of her mirror, with one hand on her bed frame to support herself, and lifting her foot into different ballet positions (pointing one foot out, or placing bottom of foot on inside of other leg), and she looks adorable! Especially because she's such a pudge monster with curls, it just makes it that much cuter.
9. What things does Dahlia love?
Dahl loves shoes, and trying on anyone's shoes, so don't leave yours out if you're around her! She's gotten pretty good at slipping them on herself too.
She also loves books, as many other BPANNERS do.
She LOVES the Wiggles, and watches their shows on repeat.
She loves to go on walks.
She loves water and splashing.
She enjoys watching other kids play tag, run around, go nuts, and can watch Teddy go around in circles on his motorcycle all day.
She loves to move, ride fast, and swinging, and we're waiting very patiently for a new swing seat that will work for her!
10. What do people say about your circumstance that bothers you/helps you?
When you have a loss or grief, I find there are a few ways people approach you:
With a huge smile and shoulder pat and say "she's going to be fine! I have faith!" or "just be happy she's here now!" in a snap-out-of-it attitude. When someone glosses over my grief, I feel lonely, small, not seen. I know you mean well, but I personally would rather you grieve with me when I'm in that kind of moment or if you are hearing the news for the first time. Maybe I'm different than most, but I'll take your sympathy over your syrupy positive attitude any time. You can't make someone who's going to lose their child cheer up. You just can't, so don't try it. It just feels a little better, for me, when you share in my sadness a bit.
"My uncle's girlfriend's cousin's kid had something similar and now he's 30 and completely normal, so you should have hope". I understand this person has good intentions, but please, just don't. This tends to be the person that doesn't want to hear what BPAN is specifically and just wants to dismiss you by telling you this notion, and most of the time they're not even able to tell you what this other kid's "similar" diagnosis is.
"That F-ing sucks. I'm so sorry". Damn right it f-ing does, thank you. These are my people.
Grief is a weird thing though, it makes people uncomfortable. People often want to move on from it as fast as they can. They acknowledge your pain then try to make you feel better stat. And I can understand that. Grief is something people want you to get through and have behind you, and they want to tell you that better days are ahead, or that everything always works out for the best. But here I am in this crazy circumstance where my grief is a slow burn. And I feel like I'm living two lives: celebrating my child's milestones, getting excited when she achieves something, but then feeling that pit in my stomach knowing I'll see it disappear in a decade or two. I both celebrate and grieve my daughter's life every single day. I'm sometimes surprised anyone even wants to be around me. So even though I'm bitching about how some people offer their condolences, please know, I understand every single one has good and loving intentions. And I probably wouldn't know what to say to someone like me either.
11. How was your pregnancy with Dahlia? Did you do any testing?
We did the standard testing, including the NIPT test. None of that tested for BPAN. The only extra test we did was some sort of super special fetal heart ultrasound, because Teddy has Pulmonary Stenosis and there was a chance Dahlia would have it (she doesn't). We knew she was a girl early on, and btw, she was an oops baby. I was breastfeeding and on the mini pill when we got pregnant with her, and Teddy was only 7 months old. To be candid, and no exaggeration, we had sex 4 total times since Teddy was born, and voila, Dahlia was conceived on time 3 or 4. We were shocked.
The only weird thing I remember being pregnant with Dahlia was how little she moved in comparison to Teddy. She didn't roll around much in my stomach, but I did feel her in there. She just wasn't very active. I was too busy with baby Teddy, work, and our new house to really give it much thought, but thinking back, it probably was related to the BPAN. Even out of the womb, she wasn't much of a mover. She also had colic, and if you know any parents who currently have a baby with colic, go call them, check on them, now. At least drive by and leave a bottle of tequila at the door.
12. What's been hardest for your friends and family watching you go through this?
I asked them:
"Not knowing what to say or do to be able to help.."
"Feeling helpless watching you feel helpless is the worst part"
"I want to agree with you that everything sucks and it's so awful, but not sure that helps you if I'm being a total bummer all the time. And your whole life is forever changed and there is nothing I can do about it. Knowing it will only get harder"
"Realizing it could happen to any of us as parents so there is some guilt there. If I complain about my kid I worry I look trivial and belittling what you are going through."
"Watching you struggle and navigate a path we are so clueless about. Not knowing if what I say is hurting or helping."
"Wanting to ask some darker questions about Dahlia's disease and her future but afraid of upsetting you or not knowing when the right time to discuss those things are"
"I know you say you never want us to keep our kids' achievements away from you, but I can't help but feel guilty celebrating them in front of you."
"The guilt I have with typical healthy kids"
"I am mad at the world really, because you don't deserve this, and I look at Dahlia and it's hard to not cry in her/your presence"
"Not knowing when to try to be positive and pep you up or to join in the anger and cry, not knowing when to commiserate with you or be strong for you"
13. Is it hard for you to see or be around other families with healthy and typical kids?
Not as much as I thought it'd be, but it does happen sometimes. When it comes to seeing kids Dahlia's age at the playground and parties, I do fine, it doesn't bother me. I do come across an issue when Dahlia gets kind of screwed over, and I get bummed. For example, at the library, it's theater seating but carpeted stepped bleachers, so kids can run up and down them, but most take the bottom level seating, because it's close up and more fun, and therefore easier for them to hop up on "stage" to dance, etc. This is the spot I'd like to have Dahlia sit, but if the spots are filled up, I have to hoist her up the bleachers and I can't let her travel back down to dance because it's too much trouble going up and down. Kids are faster than her so they "beat" her to things like toys and the swings, but I just make sure she gets her turn. Or we're somewhere activity-specific, for example a splash pad, where I'd love for her to play and run around in the water, but there are just too many kids racing around bashing each other and it's unsafe for her to get in the mix. A lot of the time kids stare a little, especially if she's screaming or drooling or flapping her arms. It's can be clear at times how delayed and different she is. But it doesn't bother me much. Dahlia is quite a presence. And the fact that she couldn't care less what you think of her screaming, drooling, messy eating, and any of her quirks, kind of makes me think she's way cooler than all the other kids. Also, I'm a realist. Some of those kids we encounter maybe do have issues, other kinds of hardship, or will get sick, hurt, or worse at some point in their lives. Life is unpredictable and not even innocent children are protected from the cruelties of the world and all its dangers. I know no one's life is perfect, or will stay perfect. So I have no reason to covet a stranger's life.
One thing I do find myself doing a lot is looking in awe at big older families, the ones where the kids are more grown up, either teens or young adults, and they all are bright, doing well, and living healthy lives. That's when I think "wow, you people have really hit the lottery". Long gone are the days when I thought it was expected and barely even a question that you'd be given anything but a healthy child to raise. So when I see families having multiples of healthy children and watching them grow up, I'm not resentful, I'm truly just astonished that they had such good fortune. It's funny how I look at these families as such rarities. I guess because my everyday life is filled with doctors visits, specialists, therapists, seeing other complex kids at clinic, and spending a lot of my time talking with other special need parents, so that's what I see as normal now.
Okay, that's 13! I warned you far above, I ramble! If you made it this far, THANK YOU!