Today we won.

 Today I did something. Today was really big. Today I was brave. Today I won. 

Anyone who knows me knows, my kids come first. My kids drive me up the wall and there are days all I want to do is hide in the closet eating chocolate but my kids are the most important thing in my life. I will sit and watch the same episode of transformer 900 times if that is what it takes to comfort my oldest. I will buy all the poop toys if that is what it takes for my youngest to smile. My babies are my life and they always come first.

Today I had a big moment where I overcame severe anxiety and talked to a stranger. I do this pretty much every day in the medical world, but this was different. This had nothing to do with nurses, doctors, tests, results, appointments, or therapies. This was just to help my sweet little boy feel less lonely. His best friend moved to a different school last year. Making friends is hard for my baby, he has some developmental delays that make recognizing social cues really difficult for him. Anyway these two little boys had become inseparable at school, they held hands and told each other they loved each other and it was very sad when we learned they wouldn’t be going to the same school anymore and we actually lived quite far away from each other. 

I ached for my baby as he the days and weeks went on and he continued to miss his friend. I thought it would be like most early childhood friendships and my son would miss his friend less and eventually forget about his first friend as he made new friends and besides he still had one very close friend at school.

Those days and weeks turned to months and my son was still desperately missing his friend. He would talk about his friend and tell everyone all about “my best friend, E.” despite having not seen him for three months. My mama heart just couldn’t take that sad little soul, crying out for its kindred spirit. I took an Ativan and called the other boys mom to arrange a play date.

That was a pretty big moment for me but what was even better was that I went to the play date! I wracked up all my courage and spent the next week planning what I would say to the other mom, what I would wear, what my kids would wear, and made sure I told my son we were going to see “E” so that I couldn’t back out.

The day of the play date came, I packed all the snacks (including extras for our friends that I would only offer if it was ok with the mom) and made sure to have sunscreen, bug spray, hats (all the normal kid stuff), plus all the extras that comes with a medical kiddo. The play date was so awkward! Like facepalm, awful, I said and did all the wrong things, and was thoroughly convinced this lady hated me. I wanted to crawl in a hole and never come back out, but my son was so happy! He was having a real childhood moment, an actual just be a kid, play with my best friend, run through the woods, slide down on your belly, eat all the ice cream, normal kid fun! That smile made it so worth every painful moment of that day. I felt like a really good mom.

As the school year went on we noticed that my son was still not really making connections with other kids, he was five years old and parallel playing but not actually engaging with the other kids. We started working really hard at helping him learn to connect with other people, we had help from an amazing team of therapists, psychologists, and teachers from his school. That’s when the pandemic hit and suddenly our lifeline was gone. 

With the pandemic happening my mental health (like a lot of other people’s) became a really big struggle for me. I was terrified of my son getting sick, he is already fragile and at a high risk of death, Covid is .... I don’t have words for my level of fear. My anxiety got way worse, to the point now where leaving the house is an actual really big struggle for me. I do everything I can to not leave the house but there are times I have no choice. With not leaving the house and locking down in a very tight quarantine to protect my high risk family members I found that I stopped talking to people. My anxiety got even worse. It got to the point that communicating with people outside of my immediate family was hard. I was hardcore struggling, more than I ever have in my life. As much as I was struggling I kept going, every day I pushed myself and did what I needed to keep my kids healthy and happy. We homeschooled, we crafted, we gardened, we painted bedrooms, we read more books, we played video games, we baked cupcakes from scratch. I found a way to have groceries delivered, I managed to have almost all of our appointments over the phone. What couldn’t happen over the phone was done by video chat when possible although that still left enough appointments that I was forced to leave the house at least once a week.

I actually started to feel ok and it seemed like I was managing pretty well, and that is when my son got sick. Something was happening he had new symptoms that couldn’t be explained by his underlying health condition. On top of it when I did leave the house I got rear ended - my car is ☠️ and I have some minor injuries but overall I’m ok, didn’t help the anxiety though. As I sorted through all of that and saw my son starting to feel better things seemed to be ok again. I started to find myself coming back to life. I started feeling less of a mombie and more like a person. I was able to actually focus on the deeper parts of my kids again and hear things that I maybe hadn’t been capable of hearing before. My youngest was learning to explore who they were and was actually letting us learn so much about being happy right along with them. My oldest was happy at home and was finally showing real signs of affection to not just me but our whole family! We were getting real “I love you!” and actual unprompted hugs and kisses for the first time in years! Our kids were thriving in so many ways! But our oldest was still talking about his friend and drawing pictures of him and trying to figure out how to send him letters. 

So today I did something. Today was really big. Today I was brave. Today I won. Today I picked up my phone and I texted that other mom, the mom I met once, the mom I had that super awkward play date with, that mom who probably was trying just as hard for her amazing little boy. I texted her and we let the boys talk. They sent videos and pictures and hearts. Today we won.

Mommy is sleeping

I'm sitting here in the darkness, exhausted, fuzzy, burnt out. It's late on a Friday morning and I can hear the world ticking by. I feel guilty, lazy, lonely, as I lay here, in the silence watching his tiny chest rise and fall, counting the seconds every time his breathing pauses, methodically repositioning him when he is gasping, timing the jerks and strange outbursts of laughter. I can see the sunlight, flooding every crevice it finds in the blackout blinds. I can hear the sounds off the morning birds, my husband taking conference calls and video meetings on the patio, the nanny and my baby playing in the living room. I start to get flashbacks of the loneliness I felt being a new mother, I remember endless nights being up to feed the baby. I remember coming near to the end of my maternity leave and wanting to soak up those late night moments of just me and the baby. I remember those lazy mornings when I could nap with the baby and feel no guilt, after all, everyone kept telling me to "sleep when the baby sleeps", but what I remember most of all was thinking it was ok because "one day you will miss this stage of life." I love my children more than anything in the world, they are my everything, but I am sooooo tired! I have a child who's at nearly six years old had the same sleep pattern he did as a newborn - 5 maybe 6 hours max and he wakes up, on a good night he goes back to sleep right away (like a dream feed) on a rough night he stays awake for hours and then crashes for another 5 hours sometime during the day. I still spend much of my time prepping formula, instead of bottles I wash bags, I sterilize soothers, I even still end up trapped under a sleeping child on a regular basis. I am grateful for all the amazing skills my son has, I am so ecstatic at the gains he has made and continues to make but just for one moment I want to complain about the exhaustion.

We are the Fast Four!

I'm working really hard to keep myself mentally healthy right now, I can't lie it's been a really big struggle. Mental health has never been something I've managed very well. As a child I was incredibly anxious, I bit my nails, chewed on necklaces/hair/sweater strings/sleeves, I spent many nights wide awake terrified of any small sound. I was so anxious, my mother used to fondly refer to me as her "little worry wart" and she gifted me with worry dolls (tiny little people shaped dolls that you would whisper your anxieties too, right before bed, stick them under the pillow and sleep on top of them, watch your worries disappear)! Into my teenage years, I would replay every conversation I'd had during the day, over and over, on a loop in my head. I would plan every inch of my outfits from socks to hair elastics and definitely my underwear (God forbid what my grandma said came true and I "got into a horrible car accident so the paramedics had to cut my clothes off.") Early adulthood found me constantly crying because I was suffering from horrible separation anxiety; I'd moved in with my now husband and out of my childhood home.

In more recent years, I've suffered from postpartum anxiety and depression. This is when things got really bad. This is when I for the first time couldn't get better, at least not without some medical intervention. I saw a doctor and started medication, we talked about therapy. I even went to my first therapy appointment; I got a babysitter; I drove to the office; and... my therapist wasn't there (she had apparently called in sick and they had missed my number on the call list). Right after this my son got sick, my life spiralled. Things were out of control and it didn't matter what I did or how hard I tried I couldn't get control. We went through hell, our whole family - like our WHOLE family went through it with us; my parents, aunts, uncles, cousins, my grandmas. We had an amazing community holding us up and helping us. We wouldn't have survived without so much help. We had people gift us money, bring us groceries, clean our house, do our laundry, house our pets, and so much more. Our children were showered with love, gifts, and prayers. I had friends and cousins that stayed up all hours of the night researching every new term or medication the doctors threw at us. I had friends and family that literally let our daughter stay with them for days and even weeks. But the person who held me together, the one who held me up, the one that let me scream and cry and wipe my snotty face on his shirt, that was Shane. He was having a hard time too but there has never been a moment when he hasn't been there for me. He has brought me meals in bed when I just can't get out from under my blanket, he has helped to make sure I take my meds every day (yes I am a nurse but I am also a terrible patient, I hate taking meds), he has worked so many hours to run a very successful company so that when our son needs me, we can handle me not working.

So obviously, I definitely struggle with mental health. It's always been a struggle and now with the pandemic, I've been doing everything I can to keep myself from falling into the deep, dark, lonely, hole. I've been trying really hard to make our house feel like the safest, warmest, most comforting place in the world. I've been keeping busy painting, and wallpapering, restoring furniture, learning to garden, and organizing closets. This is my way to feel safe, to be ok. I was driving Shane crazy with my weekly resolutions and the millions of projects I was asking him to do but he did them. We were doing ok, and then, or daughter decided to show that she was struggling a little. She was acting out, regressing, and we couldn't figure out why. We spent extra time with her, bought her presents, disciplined her, even took her to the doctor. Finally one morning she woke up and declared,  "I am a boy, a boy named Jax." This actually wasn't all that surprising to us, they had always been a very fluid child, and for the past few months they had been playing "big brother" with her dolls instead of "mommy" and randomly proclaiming "I'm a boy!" We decided to go ahead and let our child explore who they were. We slowly broke it to family and friends and we started using the pronoun "they" as Jax was in their own word "sometimes I'm a girl and sometimes I'm a boy." 

That was the point when everything else in my life stopped being important, that was the moment in my life where all I cared about was protecting my whole family, as they were, for who they were. We were facing a whole new ugly side of humanity - homophobia directed at a CHILD! Now not only were we facing the pandemic with a medically fragile child but we were also fighting for our other child to simply be allowed to be their true self. On top of it the world seemed to literally be crashing around me. Headlines of death, hate and destruction were every where. Racism, homophobia, transphobia, just pure hatred seemed to be spewing from every direction. That was it, I couldn't handle it, I stopped reading the news, I deleted my social media apps from my phone (I could still use them I just had to make the effort of going through the computer), I drowned myself in crafts and binge watching tv shows. I needed an escape. I needed to find safety again. These last couple of days I've been feeling like I've found solid ground or maybe at least a sturdy cliff that will hold me for a while. The free fall was really scary but I feel like I came out transformed. I've become stronger and braver; I've learned to stop caring what other think of my life and just live my life. I actually don't care if people think my dog is too big, my yard has too many weeds, my kids are too wild, I'm lazy, my husband is a workaholic, my house is too dirty, or whatever other hateful things I've heard over the years. Take me as I am, love us for who we are; or fuck off. We are the Fast Four!

The Never Ending Story

And so begins the never ending story of moving. I’ve pulled some boxes up from the basement. I’ve Found the tape and sharpies, unbundled the bubble wrap and found the packing peanuts. I’ve talked to the kids and got them on board (at least as on board as two toddlers can be with any plan). So here we go, deep breath, big stretch, and here we go. One box down, then another, and another. Soon I’ve got a whole wall stacked high with boxes. Two large bags full of donations stand guard by the door. I feel like I’ve made some good progress, maybe this will be easier than I anticipated... that’s when I notice the chaos around me. Everything is a mess, between my packing and the kids playing every space on the floor is covered in toys, blankets, pillows, and cushions. Time for a break, quiet time! Off to bed for Zoey. Isaac doesn’t like to nap so much anymore but he will lay quietly with me on the bed while he tube feeds and he usually falls asleep during that time. I’ll just lay down for a minute, close my eyes for a second. I’m so tired. I drift of to sleep dreaming of the new house, the fresh start it offers us. Yet it’s familiar and safe, a haven for us. If I can just get past the packing part I know the next destination is home.

What do you need?

The floor is so full of toys you can’t move without stepping on something. The counters are covered in piles of dirty dishes. The mountain of laundry is so steep and high you can’t even open the door to the laundry room. I can’t remember the last time I showered. There is so much to do but I am stuck. Paralyzed by a crushing desire to sleep. I am so exhausted, so overwhelmed, so overextended.

People ask me how they can help. They tell me just to call if I need anything. The truth is I am not going to ever call someone up and ask for the things I need. Maybe some people would be able to muster the guts to do that but I don’t have it in me. So here, this is what I need. I need someone to send in a fairy godmother who will make my house spotless, have the toys organized, and sort through all the unpacked boxes in the basement. I need a feeezer full of good, healthy, hearty, home cooked meals that I didn’t have to make and that my children would enjoy. I need a millionaire to send money to pay for the bills that are piling up and the medical expenses that won’t quit. I need someone to watch my kids, so I can breathe, sleep, shower, eat a hot meal, take care of myself. I need to not worry about my kids the second they are out of sight. I need my son to get better. I need the fight for funding to be over. I need my leave to not be over in 5 short months. I need to not have to shove a tube in my kids nose so he gets enough nutrients to survive each day. I need to not have a different appointment (sometimes multiple appointments) each day. I need to not feel like I am drowning.

It’s been a hard day and I’m feeling sorry for myself but it doesn’t erase any of what I said. I wish I could just go to bed and sleep for a few days or take a vacation for a while but I have to keep going, keep fighting, keep swimming. I have to do it. My babies need me and no one can take care of them how I can.

That is enough people for today

I've been an official special needs parent for two and half years now. It started with little miss Zozo, her early appearance and hip dysplasia along with some fine motor and speech delays and it has continued with sweet Isaac, his challenging  roller coaster ride through epilepsy.

Often I talk about the challenges of special needs parenting, the isolation, the anxiety, the exhaustion. Today though, I wanted to reflect on one of the really positive aspects of our journey. Through my children and because of my children I have learned how to advocate. I am my children's protector, their guardian, their voice when they can not speak for themselves. I have been forced to find my voice and to become confident in it. It definitely took me a while but I've become pretty great at advocating for my children, my struggle now is to advocate for myself. I've never really been great at sticking up for myself. I hate confrontation, I am fairly timid, and I am the absolute definition of an introvert. 

Today I found my voice. Today I stood up for myself. Not just once but twice! The first was not too difficult and just kind of naturally happened. It was through an email exchange, the other party made a mistake and was trying to charge me and extra fee. I pointed it out to them and their answer was to reimburse half of the extra fee. I found this unacceptable and told them so. I took me about half an hour of writing and rewriting the same email but I sent it in the end. The best part... they listened to me! The apologized and refunded me the full amount as should have happened in the first place. I was proud of myself and felt a surge of new found confidence.

It wasn't long after that the next opportunity to exercise my new found superpower came to pass. I was out shopping at the second hand store with my little's and my cousin. We managed a great haul and were very excited about our new treasures as we pulled into the check out line. The cashier started ringing through my purchase and quickly ran into a problem. The transformer dress up costume I had found for Isaac was not ringing through correctly. It was priced at $7.99 and the cashier was insisting this was some mistake and it should have been $34.99. I told her that was a ridiculous price for a second hand costume and I thought she was incorrect as the new version of this costume they also carried was the $34.99 one. She called over the supervisor to correct the price to the $34.99 on her till. I asked the supervisor to stop and double check this as I was sure the costume I had picked was the previous year's model. The supervisor argued with me and punched in the "correct" price. At this point I all out demanded they double check this. They finally argued with some huffy sighs and eye rolls. I also pointed out while we were waiting that they are the ones that had mistakenly priced the item and the scanning code of practice would disagree with what they were trying to do. To be clear it wasn't the sticker type of price tag that someone could have swapped it was the type they have to use a gun to attach to the costume. This costume was also missing the mask so there was no way it was a new costume (we already had the mask at home from a garage sale).

After several minutes of this supervisor and cashier berating me telling me how I was completely in the wrong and causing them extra work as well as holding up the line for other customers the girl who had been sent to check things out came back. She confirmed that it was in fact missing the mask and was last years costume. The supervisor let out the longest most begrudged sigh I have ever heard. She didn't even address me at this point simply muttered to the cashier and left. The cashier turned to me and said, "We will give you the $7.99 price." I replied with a polite thank you and finished my transaction.

After we left the store I was literally shaking and had to seriously calm down by rehashing the situation over and over with my cousin. She was probably ready to tape my mouth shut so she didn't have to hear anymore about it. Thanks Amy, I love you! It took about an hour but I finally calmed myself down enough that I started to feel good about standing up for myself.

And on that note, that is enough people for me today. Time to go crawl into my blanket fort with the kids and watch Toy Story.

My sweetest boy; my truest love

Parenting a special needs child is hard, there are moments that you feel that you might just break. Every time I hear about other kids that are the same age as Isaac, honestly even kids that are much younger than Isaac, developing well and doing things he “should” be able to do, it breaks my heart a little. It doesn’t take away the joy and pride I have when my friend’s baby said the alphabet clearly for her first time or when she started to recognize letters. It doesn’t make me feel any less excited as I watch my nephew grow, develop, and conquer each and every milestone like the amazing little guy he is. It just makes me a little sad for Isaac. I’m mourning the loss of what I thought his childhood would be. The thing is though, no matter how many of the sad moments or the hard moments we have there is also a great joy in raising a special needs child.

I’m sure any special needs parent can attest that raising our superhero’s is something beyond words. The moments when my baby snuggles in tight to me and still falls asleep on my chest are moments that most parents don’t get to have with a four year old. The pure elation and pride I feel when my baby makes a friend is inexplicable. The tears of joy the spring to my eyes when he goes down a slide by himself or climbs the stairs without clinging to me are so genuine. Those secret moments of giggles we share at silly things around the hospital, those times my baby whispers he loves me or tells me he is ok are heart-exploding. The very best part of my sweet little boy is that there is something there, some little part of him and some little part of me that no one else will ever see or connect with. We cling to each other, we shelter each other. I am his protection and he is my strength. My sweetest boy; my truest love.