Find your Squad

I got back Monday night from a weekend with my squad….well, most of my squad….well, most of one of my squads. This crew I met through the March of Dimes. We spread across the nation with two on the East Coast, two in the relative Midwest, and me on the West Coast. We talk/text pretty much every day. They know me better than most – we’ve shared our worst stories, heartbreaks, fears, mom-moments. We’ve all suffered the fate of the NICU either through prematurity or birth defect. When I talk about things from the NICU, they know exactly what I mean. Ditto when one of them shares something. We all have similar battle scars. We all come from different backgrounds, but our shared experiences have brought us amazingly close. We tell each other we love each other all the time. There are always long, awkward hugs when we get together.

I spent the weekend laughing those laughs that make your abs sore. We have our shared inside jokes. We have our shared story. Conversations pick up right where they left off the last time. Even though most of us haven’t seen each other in over a year, it’s as if not a day  has passed. We laugh together, we laugh at ourselves, we laugh at each other. We know each other’s faults and fears. We celebrate our own and our children’s’ triumphs. Our kids know us as their Share Aunties. When one of us falls, we’re all there. When one of us needs to cry, we usually cry together, then we pick ourselves us, dust ourselves off, and move onward. When one struggles with a child, with life, even with death, we come together.

My point behind all of this is that we all need to find our squad(s). I’m lucky to have a local squad, and my Share squad. I foundered for quite awhile after we moved to Southern California. I’d left my squad behind. Without the confidence of knowing you have your friends’ support and encouragement, that they’ll be there when you need them, it’s easy to lose confidence. I had nothing and no one to fall back on, outside of my family and my in-laws. I mean I knew my family was there if I needed them, but they were all far away, and we didn’t have the social media base and texting as we do now.

I found my initial squad in middle school. They carried me all the way through high school. I don’t know what I would have done without them. They gave me courage to step outside my comfort zone. They gave me confidence, just knowing someone who wasn’t family, who didn’t have to, cared about me as a person. Being able to trust in my group, know they would be there when I needed them, enabled me to step up and out beyond what I would have done on my own.

The Princess is just finding her squad. Every  year since second or third grade, her bestie would move away, or move on. It’s not been easy for her. In the last few months, though, she seems to have found her group. She’s learning to trust they’ll be there, but she hasn’t reached the point of having enough trust in that relationship to step out. That takes time, and building a shared history. She will know when she’s ready.

We all need to find our people….the people with whom we can truly be our whole selves, our true selves, and find comfort knowing they won’t leave, even when they see the dark parts of us. We need the people who will love us, laugh with us, cry with us, pick us up, give us courage and confidence, encourage us to stretch outside our comfort zones and grow. Find your squad.

It takes a village

This blog has been rattling around in my head for the past couple of weeks. Somehow, reaching 400 entries seems significant to me. I’ve always been the person to keep a journal, and am better at writing my thoughts and feelings than verbalizing them. So what topic is deserving of this significance? Is it Ryley, the reason the March of Dimes and Share became part of our lives? Is it Share itself? Is it what I’ve learned since I’ve been here? I’ve written and re-written at least half a dozen times in my head.

I was watching ESPN Saturday morning. They had a story about the BC football player fighting bone cancer. I was almost in tears…..this strong, big man was struck with this disease right when his life seemed to be taking off. I thought about his mom and what she might have felt as she stood by his side and watched him endure this fight. It reminded me of the days in the NICU, watching Ryley endure each and every day, each and every procedure and test, each and every stimulation, each brady. The difference being that my son was teeny tiny, and her son is a grown man. Still, standing by and not being able to do one thing for him remains a constant. Anyways, he spoke of being a survivor and the responsibilities that brings. Yes, he said “responsibilities”…..it stopped me in my tracks for a moment. I often wonder just why Ryley survived and had the outcome he did when so many others do not. And although I’ve often felt the need to give back, I hadn’t really seen it as a responsibility as a survivor of the NICU, but now I do see that. I have a responsibility to other moms out there…a responsibility to tell our story, to offer them hope and encouragement, and give them a shoulder when they need it. That is my “job”. I don’t know what Ryley’s job will be once he’s old enough to feel that mantle on his shoulders, but you can bet I will impress upon him his responsibility as a preemie survivor to reach out.

I came to Share nearly five years ago. The community was new then, and there weren’t many members. I had no clue when I clicked on the “Share Your Story” link from the March of Dimes main page how completely my life was about to change. I wasn’t even sure I would ever post anything, much less come back to the site. But I felt drawn. I consciously knew that our son was not the only premature baby ever born in the world, but I hadn’t talked to another NICU parent, well, since we left the NICU. So I kept coming back, and poking around. And then one day, there was this little flashing thing on my screen…..a direct message from Michele. She was so welcoming, so encouraging, and so kind. I felt a need to open up and let out all the things I’d been keeping inside for over four years at that point. Before I knew it, I was having Sunday night “chats” with Michele, Brenda, Karri, Darcy, and Melissa. I was crying over babies who didn’t survive, cheering on children I’d never met, commiserating with other moms over parenting, and learning that it was okay to grieve, to hurt over all we’d lost as well as rejoice in what we have. Share brought friends to my life…..wow…..amazing people, courageous people, fun people. It took me places I’d never been, and I mean physically took me places….Kansas City, New York City, DC, Houston, Chicago…..It taught me things about myself, gave me courage I never had before.

I honestly believe I’m a better person for being part of this community. I can say I firmly believe I am a better mother, better friend, better person for the things I’ve read and shared, the people I’ve met, the things I’ve done through Share. They (whoever “they” are) say it takes a village to raise children. My village happens to include amazing parents from all across this country. In the past five years, we’ve been through a lot with Ryley……asthma diagnosis, decisions on starting Kindergarten, illnesses, potty training issues, an Ambassadorship, ADHD diagnosis, and oh so many adventures (both good and bad). His story isn’t ending. My time here is NOT ending. I have my village and I’m so happy, so blessed to have Share as part of it.

9 years

I think I started watching the clock around 6 last night. I knew what was coming….all the memories of the night before Ryley was born would come flooding in. I also knew that I would be asleep through what had been the worst of it…when I somehow made myself believe I could hide my fever from the nurse (as she was coming in to take vitals), when my fever rose to 104 and my entire body hurt, when they kept taking the tobasco bottles full of blood from me, and I was moved back to L&D so they could “keep a closer eye on me”. I think they all knew what was coming for us. In fact, I’m sure they all knew. In my heart of hearts, I knew too, but I was still trying to protect myself, still trying to believe we could stop the contractions and Ryley would stay safely inside of me for at least six more weeks. But it was not to be, and on this day nine years ago, Ryley was born, 14 weeks early.

I truly believe my life would have changed regardless of whether he was premature. Your life just changes when you have a child. But abrupting at 23 weeks, spending 16 days on hospital bedrest, giving birth at 26 weeks, and spending 93 days in the NICU really, really changed me. Gone were the rose-colored, innocent glasses that I’d looked through at pregnancy before. Gone were the beliefs that you got pregnant and nine months later had a healthy, happy baby you got to take home with you a couple of days later. I learned the value of asking for help, of letting others help, of fighting with all that I had, standing up for my child, the value of life and of prayer, and a belief in miracles.

Ryley is nine years old today. I look at him in wonder and am amazed. I see that 26 weeker in him still…..the way he holds his hands in his sleep, the shape of his legs and his head, his profile. In so many ways, I’m glad he looks the same. I don’t want to lose sight of his start because it’s shaped the person he is.

Happy Birthday, my precious son. I love you with all I am.

A mild panic

I’ve been in emergency rooms before. I’ve had paramedics in my house before. Having to call 911 has always been a fear of mine. You have no idea how you’re going to react under pressure until it happens. I’d like to think I held it together, but I’m not really the best judge of myself.

This time of year holds lots of ambulance, emergency room, and hospital memories for me. Ryley turns 9 tomorrow. This time nine years ago, I’d been laying in that hospital bed for 15 days. I was sure I was going to be there for at least six more weeks. Ryley had other plans. When I’d gone into the emergency room two weeks earlier, they didnt’ even ask my name at the desk…just slapped me in a wheelchair and hauled me back to L&D as quickly as they could. I don’t think they like it very much when you’re bleeding all over their floor.

Last night, I sent the kids upstairs to get ready for bed. Michael was at his softball game and I had a conference call scheduled at 8. The kids were banging around upstairs, getting teeth brushed, jammies on, and just generally causing their usual chaos. I was headed upstairs one last time to try to get them settled before my call. I heard Ryley kind of scream and then start crying hysterically. I got to the top of the stairs, and there he was, grabbing his throat with both hands. It immediately registered that a) this was not a normal situation causing his crying; and b) he could still breath because he was crying, not turning blue, and was talking, complaining that “it” was stuck and it hurt. I got out of him that he’d swallowed a piece of metal. He couldn’t tell me what or how it happened, just kept saying that it was stuck in his throat and that it had “slipped out of his fingers”. He wouldn’t let me look in his mouth. He gagged a bit, but he absolutely refuses to throw up if he can help it. Why is it you can never find the phone when you need it? I ran downstairs to grab the phone, frantically trying to reach Michael on the way back upstairs. Ryley was still crying, so we still had breathing. I debated…load all the kids in the car and take him to the hospital myself, or just call 911 and have it done with. I called 911. Never done that before. I was just afraid that if I tried to drive, whatever it was would move while I was driving and I wouldn’t be able to do anything about it. So I called, and the paramedics were on their way.

A fire truck AND the ambulance showed up at the house about 10 minutes later (lights, no sirens – but still enough to draw the attention of the neighborhood!)(I thought twice about the length of time it took, but then they knew he was breathing on his own so it wasn’t an emergency-emergency). I think it was a bit of overkill, or maybe just a slow night in our town, because there were 7 or 8 paramedics/firemen in my family room!! Ryley was satting okay, but they were concerned about the piece of metal moving, etc so decided to take him in. Michael was on his way home. Ryley, brave big boy that he is, told me he could go in the ambulance by himself. I would drive behind with Grace and Ethan. We actually beat the ambulance there!

After about 45 minutes, Ryley was taken back to radiology. The tech came out to get us to see the x-ray. As soon as I saw it, I started laughing. There, already in his intestines, was a picture hanger! We spent another hour or so in the ER getting him examined by the doctor and discharged. They say the picture hanger should pass on its own, and that Ryley’s throat will be sore for the next few days. No kidding.

Once we got past the initial freakout, I was fairly calm. At least I think I was. I’d told Ryley when he finally came home from the NICU that his hospital time was DONE. He listened, for nearly nine years. In all that time he’s never been re-admitted, never broken anything, never had another ambulance ride. I’m tired today, but relieved. It could have been SO much worse. He thinks he’s a rock star today, with such a story to tell at school. He made us leave his admit bracelet on him for school so he could show his class. I can say that if I never see a paramedic in my house, or the inside of an ambulance and/or ER, it’ll be too soon.

Not quite as resilient

I will say it already, even though we have three months left of the year……I will not be sad to see the door shut on 2009. I’m ready for a new year already. This year has been pretty hideous for our family. I realize, boy do I realize, that there are so many other people in this world who have it way worse than I do, but it has NOT been a kind year for my family. In January, my Mom Lois had a cancer scare. In February, my Mom-Mom had open heart surgery. In April, my Daddy had cancer surgery and then a week or so later, I went home to say goodbye to my sister. In May, my sister Debby passed, losing her five-year battle with cancer. In June, my brother Ed was in a bad motorcycle accident. July brought eye surgery for Daddy and another cancer scare for Mom-Lois. Last week, Mom-Lois was hit by a 3/4 ton truck while she was driving the golf cart. Four times this year alone, I’ve left my home to go somewhere for family on an emergency basis. I don’t for one moment regret going where I needed to go, and being where I needed to be. But I didn’t realize the full effect it was having on my children. Their routines were completely upset. We had people coming and going to help take care of them while I was gone. Grace missed so many ballet classes I was worried she wouldn’t know her recital dance at all.

When Debby died, I went home for nearly a week. Daddy needed me. I needed my family. I’d been gone for three days and was talking to Grace on the phone. She completely fell apart and just started crying. She wanted me home. She wanted her mommy. I started crying. I promised her that once the funeral was over, I was coming home and I wouldn’t be going anywhere without her (as long as I could help it) for the rest of the year. My emotions from all that was happening didn’t help. They could sense my sadness, my grief. They expressed their own fears and emotions in different ways.

The kids haven’t been fond of me going anywhere these days. Grace and Ryley are both a little more clingy than they’ve been since they were little. The first day of school, neither one wanted to let me go. They’re always asking where I’m going, what I’m doing, who’s going to take care of them, and when I’ll be home. I hate that this year and all the trauma with my family has affected them this way. I just do what I can to reassure them. They need me right now. So here’s where I am, and here is where I’ll stay until they’ve bounced back.

Where am i supposed to be?

I absolutely agonized over the decision of starting Ryley in Kindergarten when he was just turning 5, or waiting an extra year. I asked every educator I knew (we have multiple teachers in the family), I asked his preschool director and teachers, I researched online, I even asked a woman I met in the airport who told me she was an elementary school principal. I wrote out pros and cons. We had his pediatrician refer him for a psych Kinder-ready evaluation (which came back inconclusive….academically ready, either way emotionally and maturity). I picked up the Kindergarten registration packet in February the year he was scheduled to start. I even filled most of it out. Then spent the next five months running in circles in my head. In the end, after many, many tears and sleepless nights, we decided he just wasn’t ready and we held him out. He spent an extra year in Pre-K at his preschool. The growth and change in him was amazing. He became very confident and very much a leader. He started Kindergarten three weeks shy of turning 6 years old, and outside of some minor bumps, he’s done so well in school. I haven’t doubted the decision to hold him out. I’ve even told other parents who are in the same boat we were that this was definitely the right choice for our son, and I would recommend it for most boys with a Fall birthday. There are at least four boys in Ryley’s grade that I know of who were held out. All his teachers have confirmed our choice for Ryley as the right choice.

Yesterday, I picked Ryley up from school a little early. He had a follow-up ADHD appointment at the pedi’s office, and we got a little one-on-one time out of it. Now Ryley’s a talker, so it’s easy to get him going. All of the sudden, he says from the back seat, “I’m supposed to be in fourth grade, and so is M (a friend of his in his 3rd grade class).” I was momentarily stunned. He’s never, ever mentioned where he is “supposed” to be as opposed to what grade he is actually in. So then the conversation started. I told him he *could* be in fourth grade, technically, but he is actually where he *should* be. That stumped him, so then I explained that based upon what the school says, he could have started a year before, but that a lot of boys with Fall birthdays just aren’t quite ready and that we decided it would just be better for him to wait a year. He won’t let it go. I’ve heard it three or four times since yesterday afternoon…him saying he *should* be in fourth grade. It’s freaking me out.

Is he mad that we held him out? Is he embarassed that he’s older than many of his classmates (some of them by a full year)? Does it bother him that we made this decision? Is he going to be bothered by it the rest of his educational career or his life? Will he blame us for making this choice? The trouble with older preemies is that they are starting to understand their start was different, and that it affects so many things besides how small they were/are and their early lives. Ryley also got his flu shot yesterday and is on the roll for the H1N1 vaccination next month as well, simply based upon his 26 week arrival in this world. He’s putting two and two together and asking questions. I don’t always have an answer for him other than “it is what it is, because you were premature”. Just when you think you’re reaching a place of peace, when you can put most of it behind you and go for days without remembering, he starts asking questions and getting upset or even angry.

Of course when you go to the pedi for anything, you get the weight check. I *knew* Ryley had gotten significantly taller since the last time we were in. He in fact grew 1 1/2 inches since February. But the weight….oh the weight……He dropped half a pound. That isn’t much….8 little ounces….but for him, it’s huge and definitely the wrong direction. He is, however, on his “regular” growth curve…the same curve he’s been on since he was 3 and finally hit the charts. But Grace is catching up….she’s just 2 1/2 pounds less than him on the scale. That really irritated him. Genetics are working against him too. If you’ve met Michael, you know tall and very thin runs in the family. Preemie or no, Ryley was doomed to thinness (did I really just type “doomed” and “thin” in the same sentence?). This is bothering him too.

Where is he supposed to be? And how much is that question going to plague him in the coming years? Does he, will he, hold it against me? I feel myself taking his questions and converting them into the guilt I already have. What would he be if not for his early birth? Would he weigh more? Would he be taller? I know for sure he wouldn’t be in fourth grade (he was due December 29th which is way after our district’s cutoff for Kinder start), but then I wouldn’t even have to deal with the question. Most of all, how do I answer his questions? Where is he supposed to be?

In a funk

Michael asked me the other day what my problem was. Honestly, I hadn’t really noticed anything. Things are a bit stressful right now….the kids just went back to school and we’re trying to get into a routine, work has been a little nutty, soccer games started, my parents were in town and you know you always freak out when guests are coming. He told me I seemed angry, constantly upset, and noted that the smallest things were sending me into a tailspin. Honestly, who wouldn’t be? But I guess this went above and beyond. When I started crying when Ryley’s song came on the iPod, and then again when I got the email from his teacher, and then again just watching him play soccer, I finally put it all together. It’s September, my dreaded month of the year. I felt like I’d hit a brick wall. Do you ever have that happen to you? You’re cruising along through life, everything just rolling, and then you just come to a sudden stop? My sub-conscious was recognizing the time before my active brain did. And yes, even nine years later, here I am again.

I should be joyous, and I know that. But this time of year always sends me into a funk. I have so much to be thankful for, but I’ve also lost so much. I know that my life would have been completely changed regardless of whether Ryley was born early or not. Having a baby just changes everything. But losing that innocence over pregnancy, losing my dream of the ideal birth for my child, losing three entire months of him continuing to grow inside of me, watching him struggle and battle and fight when he should have been floating comfortably around changed me profoundly and pervasively. Even having two full-termers after Ryley didn’t fix that or take it away. I stressed out the entire time I was pregnant with Grace. It was a little better with Ethan. But now when friends tell me they’re expecting, I’m a ball of nerves from the time they tell me until the moment they give birth.

I can’t change any of what happened nine years ago. I can replay it as often as I want in my head, but I can’t undo the decisions that were made, nor any of the outcomes. I can kick myself as much as I want and it won’t take any of it away. Ryley came early, we spent 93 days in the NICU, and life was altered for our family forever. Nine years ago this Sunday, our journey began. Ryley will turn nine on September 23rd, his birthday three months and six days before his due date. He’s a wonderful, active, very loving, compassionate, empathetic, smart, funny, adorable 3rd grader. And don’t get me wrong, I am so very thankful he is what he is. Regardless, the guilt and the grief remains.

I’ve said before the song “Wake me up When September Ends” has become my personal anthem for this time of year. I would love to just go into that cave around August 30th, and come back out on September 23rd. I told Michael to just let me have my funk right now. I’ll be done in a few weeks and then we’ll go back to “normal”….whatever that is. I need the funk. It helps me cope. And I think sometimes you just need to let yourself sink into the guilt, grief, and pain of what could and should have been as well as what is. The words to the song say it for me so clearly:

Summer has come and passed
The innocent can never last
wake me up when September ends

like my father’s come to pass
seven years has gone so fast
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

summer has come and passed
the innocent can never last
wake me up when September ends

ring out the bells again
like we did when spring began
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

Summer has come and passed
The innocent can never last
wake me up when September ends

like my father’s come to pass
twenty years has gone so fast
wake me up when September ends

I’ll get there. The next few weeks will be a struggle as the memories flood back, but September 23rd is coming. And I’ll look at my beautiful son and smile at all he is because of what was and what is.