rlmerritt

[rlmerritt]

Everything is gone, but I'm back.

May 22 has meaning to me always.

I settled on my new home on 5/22/24. A day that I could have been celebrating the 11th wedding anniversary with my wife, or.. yes... celebrating the 7 year anniversary of Remy's ASD diagnosis.

But I didn't...

I was at the tail end of a divorce being final instead.

FUCK!

I remember sitting at the settlement table. My mom asked me first. "Are you happy Rach?" I gave a nod and a half smile for mom because she needs me to breathe life to a lie instead of witnessing the truth she already sees on my face. That truth, I think, hurts moms heart more than my own. In these unspoken moments, I feel closest to her.

She asked me the question "Are you happy Rach?" Undoubtedly, knowing the answer. She knows me. I know she feels that I am not all-the-way, happy today. She can see and I know she can feel that parts of me are still very sad.

Maybe, with her question about my happiness, she was really just seeking the depth of my sadness.

By the time my realtor asked me the same question, I figured I better find a reason to explain my obvious sad or blank face. "yeah but the house needs a lot of work so it'll be a while before I can move in...." (that's "blank face" worthy... right?)

Honestly, I WAS happy to settle on this tiny little house with so much potential. One that sits perfectly on a beautiful marsh. But how could I let happiness enter me? Especially when the reality of everything I was losing was the only thing I could think of.

I was signing (so many) papers for a new home that won't contain my WHOLE family. No longer a family of 4? That's all I could think of.

This May 22nd felt like someone/something I loved so very much had died on the same day that something I wasn't sure I could love as much, was born.

It was a house that needed love to pour into it. It was still standing, though proudly, on a crumbling foundation. The roof? needed some shingles therapy!

Everything inside was broken.

With strong hands and some know how, my dad gutted all the pain the house went through. Each summer day that my dad worked on the house, his sweat soaked into its bones, taking the place of the tears I could never let fall.

My mom and my dad knew I needed this house, they wanted me to love it, because they love me....

...but I needed more than anything for this house to love ME.

I will show my love for this house every chance I get. I will appreciate the views through her windows, her landscape, the memories that this house will encapsulate for Remy and Leland.. and for me. I will show it through my photography and perhaps my writing... if I get back into this again....

This tiny house took an army of people to get it to where she is now (kinda like me). I am SO thankful for the friends that turned this house into a home, for the friends that knew someone who could help turn this house into a home, AND so very deeply indebted to the people who played a part in helping me pack up parts of my old home and with that, the broken parts of me, and bring "us" to my new home.

The house and I are small, a little rough around the edges, but full of life and love. We both stand proudly on the foundation our creators built for us, holding on to the grit of the town and the people who shaped us.

[rlmerritt]

You changed me, now you will change the world my love.

May 22nd. Our 5thwedding anniversary, and trust me, it hasn’t been the smoothest ride by any means. A lot has happened in those short five years. We became parents for the first time, we moved to another town, both changed our careers, welcomed our baby boy to our family, while our two year old was qualifying for early intervention.

Today Remy got an official diagnosis of Autism Spectrum Disorder. She was also diagnosed with Expressive Language Disorder, Receptive Language Disorder, Unspecified Disorder of the Nervous System (billable code for services) and Lack of Coordination.

Of all of Remy’s accomplishments, I’ve never been more proud of my baby girl then I am today. It wasn’t hard for me to get that information today. I’ve known it in my heart for more than two years. Megan took a little longer to jump on board with the idea of it but she’s known it too. We aren’t afraid of it (anymore at least) and we actually had to fight for the diagnosis by seeking out second opinions. Every person who has been and who STILL is a part of Remy’s therapies and education knew what Megan and I knew. Today just means that we won’t have to fight with our insurance company for the services we know that Remy needs. The diagnosis isn’t going to change who Remy is, but it could have an impact on who she becomes. Like most parents, we just want Remy to have every opportunity she needs to succeed.

What IS hard is watching Remy try to navigate through her struggles. Seeing her really want to be able to write her name because cognitively she “gets it” but her fine motor skills aren’t there yet. It is hard when she is trying to communicate something to me and I can’t get on the same page as her. It is hard when she comes off the school bus and disrupts a peaceful day with a meltdown from sensory overload. It is hard parenting bad behavior when your child doesn’t understand a time out. It is hard not being able to console Remy when she’s overwhelmed with frustration. As a parent, it is hard to have patience, to have energy, to always have understanding and frankly it is hard to keep my shit together some days…

… But we’re trucking down this bumpy road the same way we always have been; we just have a cooler set of tires now.  

Remy is a few months shy of her 5thbirthday. I can remember turning 5. It’s the first birthday I have a real memory of. I remember a few specific things about turning five like my aunt Donna telling me “you’re a whole hand now” and I remember opening up some birthday presents in the living room and I don’t know if this is a faulty memory but I remember it was just me and my mom when I was opening the presents, finger paint stands out the most. As I reflect back, what I remember most about turning five was pure and honest happiness and I know when Remy looks back and remembers turning five she will remember pure and honest happiness too.

… plus a whole ton of other very specific memories because she never forgets a thing ;)

[rlmerritt]

Early intervention.

And so we begin. How lucky for Leland (and his mommies) that he has the same AWESOME therapist Remy had. Such a gift to see these familiar faces back in our home, only this time to help our little guy smash some goals!

Leland will receive Speech, DI, and OT. Can’t wait to report all his accomplishments.

[rlmerritt]

Goodbye sweet summer.

August was a very busy month for us. Pop pop, Megan, Remy and Leland all had birthdays. Leland turned two on the 18th. It’s hard to believe he is two already. This kid is so full of life and happiness. He’s a real character one who is always doing something that just makes us laugh. He is sweet natured and sensitive but when he feels like throwing a tantrum the world better watch out because he can really carry on. All of his emotions are strong. When he is happy, it’s a joy that goes unmatched by anyone else. But oh boy, when this kid is upset he will cry you a river of what seems like never ending tears and we wouldn’t have it any other way. I hope he keeps the same passion, as he grows older. I hope he continues to share the abundance of his emotions with the people around him. Joy is contagious and he certainly spreads plenty of that around. It’s been such a gift to see him really spreading his wings and settling into his own little personality. He adores his sister and she adores him. Well… unless he is touching her stuff, he ought to think twice about touching her stuff. Sometimes it’s funny to watch him tip toe over to one of her toys that has caught his eye. He takes a couple side eye glances in her direction to make sure she’s not paying attention. He goes in for the grab with a huge grin on his face like he’s just accomplished the most challenging task and during this distracted delight he gets walloped by the disapproving shrills of his big sister Remy. He’s smarter now though, he will drop that toy or throw it in her direction with inconceivable precision quickness and by doing so avoids the inevitable smack down that was about to ensue.

Leland just had his 2 year well check and although Megan and I feel that there is an immense difference in Leland’s development compared to Remy’s at his age, his pediatrician recommended to us that we have him evaluated by early intervention and he qualified to receive services. So here we go again, only this time we accepted the news with appreciation and optimism rather than apprehensiveness and concern. We’re hoping to see some familiar faces when therapy begins.

Our beautiful Remy just turned 4 on the 30th. It is so amazing to witness her reach her developmental goals. Some days it is so easy for me to forget where she started and how far she has come. As she grows older she has over come her old struggles but also begins to face some new challenges. She just started her second year of Pre-K and has a whole list of new goals to achieve. She has the same teachers and still enjoys taking the bus to and from school. I love excited she is to go to school each day.

Leland and Remy had a fun filled summer but the most special part of summer was our visit with Shaun. It’s hard to put into words just how much we appreciate and love Shaun for unselfishly helping us create our family and for being available to spend time with them so that they will have memories of him from the time they were small. We want them to always know that we choose a known donor for them so that they can benefit by having a relationship with him. While they are younger we plan to arrange visits for them every so often but as they get older we want the choice to spend time with Shaun to be theirs. 

For now we settle in to another school year and for Leland the adventures and excitement of early intervention. Stay tuned for updates on that. 

[rlmerritt]

who.

It’s been a while since I’ve felt like writing anything. I have to be honest. I’ve been very uninspired to sit down and write about what life is like for a family like ours in times like these.  It’s the first time in my life that I’ve actually felt afraid to publically be WHO I am.  Right now in this time period WHO I am doesn’t seem to matter to our president, his administration and some of his supporters. Only WHAT I am matters. What am I? A Lesbian woman whose marriage to her wife could be void at any moment. Our marriage license granted me a place on both of my children’s birth certificates as “Parent B”, a title I am MOST proud to hold 2nd to being called Momma.  My marriage rights and my parental rights are threatened every single day that #45 and his administration remain in office.

Fear has momentarily detached me from who I am. It separated me so far from myself that I could only see myself for WHAT I was. I forgot that WHO I am matters to the people closest to me. To most people, it’s just another election, just another new administration. To me… it threatens EVERYTHING I AM. It offends everything I believe to be good in the world. It’s….cataclysmic. Period.

A few months back I posted a blog entry explaining that it might be my last because I felt like our family was vulnerable and unprotected and to have a public blog floating about the Internet would be irresponsible.  Now I realize that to be silent and afraid is what would be irresponsible. So I will continue to write about Remy’s journey and the journey that Megan and I live as parents to our two children. I will continue to write about a family like mine just in case it may touch the hearts of families like yours. Because WHAT we are isn’t so different from WHO you are.

…and I just want to go back to loving people again.  

Even if this election has changed the perception I once held about our nation of people, I know now, we will ALWAYS need more love.

With more love, that is how I am a momma to Remy and Leland.  There’s nothing I wouldn’t do for either one of them. Nothing.  When they were born, I became another version of myself. I became grounded to the earth and whole and so full of life and love. I was created into this new person I never knew existed from inside of my old self. When they were born… I was born again too. 

Remy and Leland belong to me just as much as I belong to my own parents and no administration in the world will take that from me without me dying for it first.

 So with that said I’ll lead into life. Our life. Our perfectly, imperfect life.

Remy continues to make strides. Early intervention and special education preschool has spun Remy into a 360. Like most kids, Remy has changed a lot in a year. Remy’s measurements of change are how much she has caught up to other children in her age group. In just the first few months of school Remy has been able to transition from the special education classroom to spending almost a full day in the classroom with her neurotypical classmates.  I didn’t know what the abbreviation NT meant before autism was part of our lives.

I hate words like Neurotypical.

I hate that I never knew about that word before autism and I hate that I know about it now ONLY because of autism.

It’s just another term to make a “WHAT” she is, or isn’t. Instead of WHO she is.

Remy is an extremely loving and affectionate 3-year-old little girl. So full of life, fun and happiness. She doesn’t have an official diagnosis of autism yet and still may not get one at her upcoming appointment in April. However, Megan and I feel that it is likely Remy IS somewhere on the spectrum. High functioning maybe with a sensory processing disorder.  We aren’t doctors though, only parents who live in and feel her struggles.

Ironically, if Remy doesn’t get diagnoses of ASD, we may eventually find ourselves advocating for her. Advocating to get Remy the diagnosis we initially were so fearful of hearing.

With out a doubt, Remy wouldn’t be where she is today without the therapy she has received with her amazing therapists through early intervention and the therapy she continues to get at school.

She needs to continue to get that therapy. 

Autism has changed me.

Its capable spectrum can illuminate the simplest of lives and embellish them in the most beautiful ways.

What a gift Remy has given us.

[rlmerritt]

No ordinary love.

I always want to start this blog with an exciting entrance word. Like “WOW!” and sometimes something less heroic like OH SHIT! Because it seems like my kids keep me on that sliding scale of emotions.

But once again I start with a heavy and overwhelming feeling of gratitude.

I have written about Remy and Leland’s donor throughout this blog. Many of you have been following from the beginning. Some not. Either way. Let’s get into the heart of the matter right now.

After our miscarriage, Megan and I decided to move on from old fashion corporate cryobanks and the donors that exist within the proverbial catalogs. Yes, we wanted to pick traits, eye color, dimples, hair color, intelligence, hobbies, ethnicity etc, etc, etc…

But we wanted a connection with a person and not just a profile on a website.  We wanted our kids to be able to know their donor before the age of 18. We wouldn’t allow our children’s decision to connect with their donor to be dictated by some crappy clause in a million dollar corporate company’s paper work. 

So simple is it to choose a donor from a website catalog. To see a baby picture or two, hear an MP3 of the donor talking about their hobbies, view his blackened out adult side profile… exploit the family to pay even more money to get as much info of him as possible. To watch time and time again your “favorite” chosen donor “sell out” while you and your partner battle BFN (Big Fat Negative) after BFN on a home pregnancy test only to have to start the process of choosing another donor all over again.

Long before I knew that I was going to have trouble with my own fertility, we knew that our firstborn was going to biologically Megan’s with the help of a donor.  After the miscarriage… we approached the selection of our donor more seriously. We wanted a donor who too was invested in the creation of our family. Someone who was willing to play a role in our family as much or little as we were comfortable with. We wanted to choose someone who was “perfect” in our eyes…. but as important as our selection of him was, was his selection of us.

Sure… we picked him. Most importantly he picked us!! He did. He had a connection with Megan and me and our story. He had sympathy for the journey we were on. He asked us about our family. He asked us about our miscarriage, if our parents and our siblings were supportive of us having children and if our children would have a place within our extended family. He wanted to know if our children would have cousins (being close to my own cousins, I was sold on this). He cared about what our family was like before we added to it.

It didn’t take long for me to fall in love with him. And if you’ve know me since I was like the age of like 15… you know… I just fucking fall in love people, in general. I just love PEOPLE. I do. I meet you, I laugh with you, I get in trouble with you, I argue with you, and I experience life with you…. You make your mark on my heart and I just can’t let you go... I can’t. Even if you were never “mine” I can honestly admit that part of my heart will always belong to you.

So my heart is entirely his, in any way that a person can show their gratitude to someone else who so selflessly gives himself to them.

He gave us (and our family) a part of himself for life…. Twice… Remy, Leland.

I know a lot of my attention to this blog has turned to Remy’s journey. We still don’t know is she will get a diagnosis of Autism spectrum disorder or not. We do know that she has a diagnosis of “mixed developmental delay” That she has a speech delay and struggles with sensory and feeding issues. We also know that as each day passes she copes and overcomes those boundaries, closing the gap between her and her peers.

Remy had her appointment at CHOP with a genetic counselor. She passed her psychical exam so we are still waiting for approval from our insurance company for a genetics work up that could explain her developmental delay or look for markers for autism. 

We recently obtained genetic testing of Remy’s donor that shows several “increased risks” genetic markers for autism… another benefit of having contact with our donor and other donor families within our community.

Guess what else we saw in this report? That our donor has increased intelligence, he carries a gene for increased compassion for others. He is highly likely to have musical talent… etc etc.

He also has carrier statues for Tay Saches, Cystic Fibrosis and a type of genetic hearing loss.

But he has allowed himself to be studied so deeply for the benefit of the families he contributes to.

Megan and I know more about his genetics then either one of us know about ourselves. We know his increased or decreased risks to every cancer there is to be reported. We are aware of his intolerances to red meat or to certain medicines. We know what risks his genes pass on to Remy for breast cancer… We know what Leland’s chances are of male pattern baldness are. We know almost everything there is to know about our donor that is genetic. That most families do not know about themselves.

Megan and I have obtained some of this information through other members of our donor family who’ve paid out of pocket for these tests as well as viable information from our donor.

All I could think about scrolling through his raw DNA report, seeing all the red markers for autism, seeing the gray areas was… It’s a higher love.

This love is above all. I love Remy with such fierce intensity, I love Megan with unbreakable force, I love Leland like a burning fire inside me… and I love the once stranger who saw my love and gave us all the love that he had to give.

 And so through him we have made these unbelievable connections with other people (Jess) and the families. Since our donor has the right to also choose whom he wishes to donate to, it makes sense that we all have this comfortable connection.

It’s incredibly easy for me to fall in love with Remy and Leland’s donor siblings and their parents, why not right? We share the very best thing in common. Our children.

[rlmerritt]

the contrast of being a mom to a girl and a boy is immeasurable.

[rlmerritt]

Time.

 Time is cruel… and unlike the Rolling Stones, not on my side. When Megan and I were trying to have kids, time stood still. We lived our lives in excruciating and emotionally draining two-week increments. Two weeks of preparing, pill popping, poking, prodding, and painfully waiting to know if all of our efforts paid off. Time literally didn’t tick for me. Every hour was an eternity, every day felt like a years pace. Our early fertility struggles felt like being on trial, the miscarriage, our sentencing. Every month, another attempt and every time I was pleading our case to who ever would listen to my prayers. I was desperately WISHING AWAY the hours, the days, the TIME and distance that stood between our first child and my arms.

When our babies were born time froze just long enough for me to soak in how impeccable they are. In just a blink they’ve forever made their mark on my heart. The soft and familiar scent of their skin, the faint flavors of salt on my lips from kissing away the sad, the beautiful songs in their voices, the palpable joy I have from their laughter… all of it, captured and fossilized forever in my heart, in my soul.

Time eludes me now. I could have never been prepared for this. Surly this has to be a relentless trick.  Leland has already lived his first year of life. Had all his first holidays, his first tooth and even his first ER visit. All those “firsts” are “lasts” for Megan and me (well… let’s be honest, probably not the last ER visit for Leland). Where is time going so rapidly now? TIME. It’s the swirly funnel of water being sucked down the drain of Remy’s tubby, the last breathless glimpse of a Ludlam Bay sunset before it’s gone; it’s your first baby going to preschool… and I’m vulnerable to it, to the idea of this being the first step of letting go. Time sort of just builds upon itself with out you noticing. Then suddenly there’s this wave, this crescendo of abrupt actuality…and I can’t get a grip on it.

Remy’s strides are larger than ever now. She’s on the runway, full speed ahead and spreading her wings to fly!!! She’s taken off, and I’m just a momma standing at the tarmac wondering… where has the time gone?

[rlmerritt]

our heartfelt thanks.

I wasn’t exactly sure how to start my blog tonight since there has been an assortment of emotions. I’ll begin with how proud I am of Remy. She’s been doing so well with her therapy that some of her services have been cut back. That’s bittersweet for us because we will miss seeing her therapist on a regular basis. I cannot find suitable vocabulary to communicate how thankful we are for them. How is one really able to adequately illustrate appreciation for such a priceless gift? At Monday’s meeting we reviewed what our goals were for Remy six months ago.  I was blown away by what those goals were. Truly, Remy has made a 360.  For example, six months ago we wanted Remy to look at us, to be able to communicate if she needed something, to call us momma and mommy, to eat food!!!  We are miles from that starting point now. It’s very exciting to see Remy making all this progress and while we are thrilled that Remy is doing well enough to reduce services, it’s also a scary thing because these people have been holding our hand walking us through it. We’ve learned so much from them. Every single therapy session gives us an opportunity to learn another way to help Remy. To say they will be missed is an understatement. One of these days we will be on our own with all this and I just hope we succeed for Remy.

Remy is growing up so fast. In the fall she’ll be going to preschool five days a week for a full day. It’s weird to think that someone else will have responsibility for her all day. I’m nervous for Remy but mostly I’m nervous for myself. I hope I can handle it ;) I guess every parent has been here before. It’s hard watching your baby grow up… My cousin told me once that even though it’s hard when the kids grow up, each new stage in their lives brings something else to enjoy. I like to remember this when I get sad about my babies growing up faster then I’m prepared for.

Last but certainly not least… A video dedicated to Remy’s amazing therapist, who became part of our family each week and gave us the invaluable tools to help Remy succeed.  Our heartfelt thanks…

[rlmerritt]

I live by the ocean, I heard about your footprints... Thank you.

When I mention the strength of our marriage. I’m talking about the things we have overcome to be this strong. It hasn’t been easy. We’ve been broken.  Yet here we are celebrating our marriage anniversary together at the same time as we pick up the shattered pieces of our last breaking point. We both took on completely new jobs, which allows the both of us to be home with our kids pretty much 24/7, but it’s usually one of us at a time, making it seem like single mommy time…. all the time. We are thankful that at least one of us is always here with them and even more thankful that our schedules allow for both of us to participate in Remy’s therapy 4 days a week. Rarely do we have to rely on a baby sitter for the kids because of our work schedules. And when I say “baby sitter” I mean we are blessed enough to have our family watch our babies when we are working or on the off chance we want a lunch or dinner date together.

Most mornings I am to and from work before Megan and the kids are even awake, or I’m home just in time to make everyone breakfast.  Then I head back to work in the afternoon and I’m home by 4-5pm.  Megan’s shifts starts when I get home. Mostly, she works from home 5pm-11pm but sometimes she works out of the house. Her job and her hours are far more demanding then mine.

She wakes up in the night with Leland, she’s home with them in the morning while I’m working so she wake up with them too. I’m usually home to help with breakfast and therapy and lunch prep but then it’s all up to Megan getting the kids down for naps. Usually I’m home as they are waking from those 3-hour naps, then Meg’s off to work and it’s the “dreaded night time routine”.

I hate this part of being a mom because… frankly, I suck at it. I’m racing the clock to get the meal cooked between 420pm and Meg’s start time of 5pm. Since Remy has feeding issues we really make an effort to eat together as a family. So that Remy can see us all enjoying a meal as a family. Except that 10 minutes into the meal Megan has to leave for her office, I’m shoveling food down my throat because I haven’t eaten since breakfast, Remy is barely touching her plate and Leland has already eaten everything on his tray and demanding more as I try and bribe Remy into another bite of her meal.

Dinnertime is a struggle for me and I do it alone every night. I have a 9 month old who needs assistance eating but I ALSO have a 2 and a half year old who has no oral awareness and doesn’t know when she has too much food in her mouth or not. So each night is an interesting battle and back and forth between them. Remy still cannot properly take a bite from her food. For example if there was a half of a sandwich she is not able to pick it up and take a bite. Instead she will either avoid it… or most dangerous, pick it up and shove the whole half into her mouth as once. She will gag on it! We still break up her food into bite size pieces because of this. Remy is almost three and has still never picked up a piece of bread or a sandwich and bit into it. She JUST learned how to bite into a popsicle.

Its just another small hurdle of Remy’s that we live with everyday… until one day when it becomes a much bigger hurdle.

I mentioned I do the night routine with the kids alone every night….

Feeding Remy is more difficult then feeding Leland. Most nights I’m happy if Remy will eat at least half of her “safe foods”. After that I welcome any calorie that will make it inside her little body. So if she asks for something after dinner she gets it.

One night she asked for chips. It’s something she asks for a lot. Sometimes it’s a “side” for dinner (don’t judge). She eats chips in a certain way. I put a few in front of her and she smashes them into smaller bite size pieces that she can fit into her mouth, since she doesn’t prefer to bite into things.

So I gave her some chips. I left her to her smashing, I even helped her smash some and then I disappeared around the short corner to the bathroom to bathe Leland.

This particular night I had already run Leland’s bath water, something I don’t always do prior to putting him in the bath. I sat him down in the water and it was quiet other then his soft splashing.  I heard Remy just around the corner watching bubble guppies on the DVD player, sitting at the dinner table eating her smashed chips. I’m beginning to wash Leland’s hair and I hear Remy gag. It’s something I’m used to hearing because of her feeding issues. I get up to peak around the corner and before I can see her I then hear a hiccup sound. It wasn’t a split second later my face made it around the corner only to see Remy’s face. Her face was flushed red, her tongue sticking straight out and her eyes fixed in panic. She wasn’t breathing. She was choking and I’ve never seen choking before! I’ve trained for it, been an EMT for a minute or two and learned all about it but I’ve never seen it! But I was seeing it now and it was my kid!

I ran right over to her. I lifted her out of her chair and at the same time as I was lifting her I was giving her the Heimlich with one arm! I twisted her around and looked at her face and she was still struggling. Her face, such a deep red I’d almost call it purple if I wasn’t afraid to say so. I just kept pulling her little body into mine. I remember saying “Oh God, Oh God” I was yelling PLEASE!!!! And COME ON!!!! And I don’t know who I was yelling to but I was hoping someone was listening and someone was because when I turn that sweet baby girl around and looked into her mouth I saw this “white snake” of compacted chips coming up her throat!! I was too afraid to stick my hands in her mouth and sweep it away so I shook her head back and forth until it hit the table. A 3 inch white snake of compacted potato chips shaped in the form of my two year olds esophagus!! WOW!!! That’s so great!!! It’s over now! She’s breathing!! And I haven’t died of a heart attack or surprisingly didn’t even pee myself!...

…Except I left my 9 month old in the tub all by him self this entire time while I was saving my 2 year old from choking.

I dashed around the corner with Remy still in my arms and she’s screaming and drool and chips are still falling from her mouth down my arms and I see my boy! He’s just sitting there splashing about, laughing and cooing….

Alive and undrowned!!!!!!!!!!!!

I got on my knees with my baby girl, I turn her around, I looked right into her face, through her tears…  I collapsed in my tiny little bathroom with my babies and for the first time in my life I am on my knees and thanking someone, something, for being with me when I thought I was alone…

…All I could think about was what if I didn’t run his bath water first? I would have never heard Remy gagging or the alarming and distinctive hiccup sound she made. Then all I could think about was, what If I couldn’t get Remy to come around as soon as I did… would Leland have drowned? In my panic I had forgotten about him in the tub! I forgot about him!!! Ugh my heart hurts typing this, I’m sobbing. I can’t shake it.  What If my baby girl choked to death and while I was trying to save her my baby boy drowned?

It didn’t happen, but it could have and I’m clearly still not over it.  That experience still lingers there everyday.

That day, I was a bad mom. And I am utterly fearful of the next time I am put to the test. I can never fail myself again, for if I do, I could fail my children.

…This is a fitting ending to my blog because when my daughter was choking and I was trying so hard to help her I had visions of my great aunt Anna who is also my God Mother and when I had those visions of her all I could think about was my cousin Stacy and I felt wrapped like a hug. My cousin Stacy,  who once told me when my first baby was born,

“Rach, It’s like a piece of your heart walking around in the world”.

 …It is.

 It really is.

[rlmerritt]

When life is a diaper.

Remy went for her hearing test at CHOP on April the 7th. The experience was an interesting one. I was curious how a hearing test would be performed on a two and a half year old, not to mention one who isn’t so good at following directive. The first part of the hearing test was the most difficult. This was the part of the test where the audiologist looks into Remy’s ear with her scope, when that was through she inserted another device that took a picture of Remy’s eardrum. Those exams were negative for anything abnormal. Remy typically does not mind having her ears looked at when she’s at her pedestrian’s office but on this particular day she wanted no parts of it. I knew this was coming the moment we met the audiologist. She was very rigid and I think Remy sensed that right away. I could tell that Remy was already uncomfortable and nervously looking around. She didn’t prepare Remy for things that were about to happen and didn’t talk to Remy much at all, but rather only instructed me on how to hold down Remy. Luckily that process didn’t take too long. 

After that we went into a little room. There was a chair placed in the center that faced a window. The audiologist was on the other side of that window. They way the test was supposed to work was that Remy was to sit on my lap in the chair and look straight ahead at the audiologist in the window. She had little toys she would hold up to try and hold Remy’s attention. Then a sound would play from the various speakers located around the room. When Remy would look in the direction that the sound was coming from a puppet or TV would turn on to signal she was correct.

It took Remy a little while to settle into the test though. She wouldn’t sit in my lap again because I think she felt like I was going to be holding her down again like in the last room. She wasn’t very interested in looking through the window at the audiologist either. Which wasn’t surprising to me because it’s very difficult to grab Remy’s attention if she isn’t willing to give you any.

A 2nd audiologist was placed in the room with us. She sat below the window and Remy sat on the floor in front of her. She distracted Remy with little toy animals while the test proceeded. Remy reacted to signals by looking in the direction of the sound when she heard it. Some sounds were so low that I couldn’t hear them (maybe I should have my hearing checked ha).  I noticed that after 5 minutes of the testing that Remy seemed to be bored with it. She was more interested in the toys and had a longer reaction time to the sounds, but reacted nonetheless.

When the test was through the audiologist came into the room to explain her results. Remy scored fairly well on her hearing test. There were some areas where the sounds had to be increased to the next level but the audiologist said this could have been because Remy was sitting low on the floor and not elevated in the chair, or that even though her pictures where clear she could still have congestion in her ears from her cold.

She suggested we come back in 8 weeks for a re-test. She walked us to the front and we scheduled that visit for June.

This hearing test was basically just to rule out major hearing loss. Megan and I have never been concerned with Remy NOT being able to hear. In fact our concerns are that she is over sensitive to sounds. We know she can hear well. Sometimes too well, there’s no sneaking things past her ever. With that in mind, Megan and I decided that we will not be bringing Remy back for a second hearing test. The audiologist was very informative and at no time did I feel like Remy was not getting a thorough hearing screening. However, there was an issue with her lack of patience with Remy and since we know that Remy does not have an issue with her hearing we have opted out of a 2nd hearing screening. 

Remy continues to make us proud with all of her developments through her therapy. Her speech is clear and her vocabulary grows everyday. Remy is still experiencing some difficulty with her communication. She recently just learned how to tell us yes and no. That may sound like such a simple thing but to Megan and I, it’s huge. For the longest time, we have always guessed what Remy wanted and we got really good at doing so. I’d brag about that except for the fact that since we knew what she wanted all the time it didn’t encourage or force her to use language to ask or request things. Since then we have learned to “play dumb” and wait for Remy to tell us what she wants. Before therapy Remy didn’t even know how to point at things she wanted. Now she points at what she wants and tells us too. For example, and multiple times a day she will look at one of us, point to the pantry, and say “chips” in her adorable little voice (which happens to be my favorite sound in the entire world). Remy’s ability to tell us yes or no has also changed our lives. For example, before Remy could say yes or no she would just yell to request since she didn’t know any other way to communicate that to us. If I was pushing her on the swing and stopped pushing she might have yelled about that. I may have thought something else was wrong like maybe she wanted to get out of the swing. If she didn’t’ more yelling would happen. Now I can ask. Do you want to get down? (The answer is usually no). Or I can say do you want Momma to push you and she will say “yeah yeah yeah!”

We’re really enjoying Remy’s new discovery with the word NO. Remy it’s time for nighties… “No, no” she protests. It’s really heartwarming.  I’ll keep this heartwarming feeling in mind when she’s a teenager too. ;)

Next on the list is for Remy to master making choices. Right now if we give Remy a choice between apple juice or milk her reply is “yeah yeah”.  Or if we say you can have fruit snacks OR chips, which one? She’ll say “yeah, yeah”.  We’ll get there.

I say that with certainty because we have been blessed with such an awesome group of therapist for our best girl. OT, Speech and DI 4x a week is the best thing that’s ever happened for Remy. It’s changed EVERYTHING for us. It’s opened doors that I know I was desperate to get a peak inside of.

These are remarkable people, doing amazing things for our little girl and I am not sure I will ever find a way to thank them sufficiently.

Let me talk to you about this boy in my life. He has the dreamiest eyes. They are pale blue and green with such softness to them. He has long dark eyelashes that flutter with every glance he makes my way. The flutter of his lashes has a ripple effect straight to my heart. Thump, thump, thump…

He has a little giggle with such big conviction, his playful banter sucks me in every time. I’m smitten. Admittedly. I mean…can you blame me?

 So imagine the heartache I had when this poor baby boy started with his second respiratory issue. Ironically he and I suffered respiratory issues at the same time the first time around (I came down with bronchitis shortly after his RSV diagnosis).

The boy suffered with the first round of RSV for about 2 weeks, I struggled a little longer (4 weeks) because I waited too long to seek treatment. The poor boy was only well for about 2 and a half weeks before he came down with his next respiratory struggles. This time it landed him in the ED at CHOP. I was well for about 4 days before I started with respiratory symptoms the night we were in the ED with him.  So there we both were again, struggling from the same rotten respiratory crap we had both just got over. 

Him and I developed a camaraderie. We both were prescribed multiple inhalers, we both were prescribed nebulizer treatments, and we both were prescribed a steroid. We were in this together!  It wasn’t easy but we got through it and for the record, I was the bigger baby.

We couldn’t have done it without our favorite nurse. She set up our medicine area and our breathing treatment area and she took care of the boy with his medicine time and made sure that I was not ignoring or forgetting to take care of myself. What would we do without her?

…for real?

I mean sometimes life can be so hard it hurts. If you were a diaper, life can creep up the backside of you and blow out at any given moment. Your gonna need a good nurse for that shit.

[rlmerritt]

waiting on I love you.

When Remy was about a year old we started noticing things that were different about her development. In many ways we thought that Remy was a little advanced for a 1 year old. She had a deep interest for toys and things around the house that were beyond her age range. The things she did find interesting she was almost obsessive with. Magnetic letters, foam letters, letter apps, letters in books, letters on the TV, words that sound like letters “be” “see”, She was so consumed by letters she had already learned how to say a dozen letters before she turned a year old and learned the entire alphabet by 16 months (minus the letter “Q”). She was a master at her learning apps, cause and affect toys or anything else that required thought and tinkering with. Some toys challenged her motor skills and it seemed like her mind knew what to do she would have extreme moments of frustration. There was never a moment that Remy didn’t have this intuitive look on her face, as if she were really soaking in everything around her. It almost seemed like I was able to witness the exact moment something would click in her brain and become something learned.

As much as Remy seemed to learn or know things that I felt were advance for her age, I also noticed that she was behind in some of the things I would consider simpler for her age. By 16 months she still wasn’t saying mommy or Momma. Besides the letters of the alphabet, she only had a handful of words. Out of that handful, “juice” was the one she used regularly.

Besides the things she wasn’t doing there were plenty of things she WAS doing that caused some alarm. She was having extreme sensitivity to loud sounds, she was avoiding eye contact, she had food aversions to certain textures, she routinely lined up and sorted her toy cars, and she communicated her needs to us by putting our hand on something she wanted rather than asking.

By the time Remy was 22 months old I finally accepted that maybe there was something more going on with her. Megan naturally has more patience than I do so it was a little harder to get her on board with my concern for Remy.  

I remember the day I finally said out loud to Megan what I had been feeling about what was going on with Remy:

Remy and I were in the waiting room of the OB’s office while Megan had a 34-week check up on Leland. Remy, as she always does, caught the attention of everyone else who was in the waiting room with us. Eventually one of the nurses who worked there had to come out and say hello. She talked to Remy about her toys and things like that and then she asked me her age. “She’ll be two in August.” I said. She made a polite remark about how Remy must be shy and that before I knew it she’d be talking to every person who would listen.  I wasn’t so sure. For as long as I can remember it seemed like we are always waiting. I could not wait any longer to acknowledge Remy needed our help.

Leland was born 2 weeks later. He was a month early. So we had to have Remy’s 2-year check up with her new pediatrician at the same time as Leland had his very first check up with the pediatrician. That was in August. On the same day we made an appointment with a developmental specialist at CHOP. He’s so great there’s a six-month wait to be seen. That appointment is on March 22nd. 

 In the meantime we had set up an evaluation for Remy by with the early intervention team through the county that we live in.  Two therapists’ and a caseworker came to our home the day after Christmas and spent a few hours with Remy. They were wonderful. The whole experience was very pleasant and in a way very reassuring. By the time the evaluation was over we knew that Remy’s scores qualified her for early intervention therapy. I had a mix of feelings. I didn’t want Remy to have issues that allowed her to be qualified for early intervention, but I was happy that my concerns for Remy were validated by professionals and that these people were going to give us the tools we needed to help our baby. At the end of the evaluation they ask if we had any questions. I was almost afraid to ask but it finally came out, “I know you don’t diagnose but from what you saw today, does Remy have Autistic behavior?”

She said, “She has some red flags for autism...”

She explained a bunch of things after those 7 words but I had already stopped listening. “Red flags for autism” echoed in my mind while she continued to speak, I glanced over at Megan who was crying. Immediately I wanted everyone to leave so that I could have a quiet moment to let in sink in. I couldn’t concentrate on anything else except for how we were going to help Remy. 

For a split second Megan and I felt lost, terrified and a little down but with the support of our family and Remy’s AMAZING team of therapist’s we’ve been lifted up. She has a team of three wonderful therapists’ that help her with speech, OT, feeding therapy and teaching her developmental skills. They have already given us something we were so desperately seeking, a way into Remy’s world, a way to communicate with her. Remy is so lucky to meet with them four times a week. It fills my heart when Remy goes running to them and their big bag of toys ;) It makes me so proud of every single accomplishment that Remy has because of their help. I have so much gratitude for these wonderful people who leave their families every morning to come be a part of ours.

 …We’re still waiting for her March 22nd appointment with CHOP; we’re still waiting to find out if there will be diagnoses of autism.

We waited two years for hugs, we waited two years and five months for her to say mommy/momma, we are STILL waiting for her to give us kisses, for her to interact with her little brother…

…And for her to say, “I love you”.

I think it’s quite possible my heart may explode the day Remy says, “I love you Momma” It’s just 4 simple words. But to me, these words are dangling from my heartstrings just waiting to be plucked, like music to my ears when my baby tells me she loves her Momma.

 It’s an exceptional feeling to be at these crossroads. Remy gives me such profound happiness and joy just the way she is and I would wait on forever for her.

 .

[rlmerritt]

“My Baby”

“My Baby” those were the words she uttered the moment he was born. (You can view the modest video of his birth at the end of this blog post) Truthfully, I don’t remember if I said anything. I just remember thinking how beautiful he was and that (at the time of birth) he looked exactly like Remy to me. Megan’s labor was a lot easier for her this time around. Leland is a week old now and taking on features of his own, not so much Remy’s twin these days. I don’t have much to report about him so far except to comment about how cute he is. There really hasn’t been much bonding between him and I yet because right now he is either sleeping on Megan or nursing off Megan. I haven’t had a chance to notice a personality, a feeding cue, a gas face, or even his sleeping habits. 

People have been asking how Remy is doing with the new baby in the house. So far Leland is just another object in the room to her. She pays him no mind most of the time. She does get jealous of him but only when I’m holding him. That’s something that feels like a compliment to me. As if to say “I’m HERS Leland!” 

I am however, able to take care of Remy and we have been spending most of our time at the beach together. Soaking in those last beautiful days of summer and it has really been a blast! I don’t know if it’s the one on one dynamic between us or what but she has really become such a water baby. I wish Megan could see the way she dives into the waves now and loves to be knocked down by them. It’s been really special to take my number 1 to the beach and spent these days together. She’s so full of spunk and coolness and everything amazing. I can feel that Remy has really enjoyed and needed these days together too. 

We did have our first outing as a family of four when we took Remy to Cape May County Zoo. Leland slept the whole time in Megan’s stroller but I’m sure he liked it too lol.

We also had Leland’s infant photo shoot with HTMphoto. If you’ve been following the blog you’ll recognize them and their talents as one of the two photographers we hired for Remy’s infant shoot and they also did Remy’s one-year photos. We’re looking forward to seeing what Ryan and Kim’s talents bring us this time. They are naturals with the infants. I’m always admiring how calm and patient they are, so soft-spoken and delicate with the baby as they are working. We love them to pieces and recommend them HIGHLY!

Leland’s infant shoot was bitter sweet for me, as I remembered Jesse on this day. He was our other photographer for Remy’s infant shoot, whom we tasked with capturing the first days of our lives together as a family. The beautiful canvas photo’s that hang on the walls of our home remind me daily of what a beautiful job he did. Each time I look as his images the emotions I felt those first day’s as a family of three are palpable. Jesse spent the entire day taking hundreds of images. The last images he took that day he said were for him, as he set a timer on his camera and hopped on the couch between Megan and I and asked to hold Remy in his lap. The camera flashed and his work was finished. It was the last time I saw him… I never did see that photo and I would give anything in the world for a copy of it now.

[rlmerritt]

29 weeks.

The last time I posted a blog was 10 weeks ago!! Since then we have packed up an entire house and moved into a new one (thats the short version). We have also had several ultrasounds of our little boy. The 20 week anatomy scan was clear! Baby boy is as healthy as can be. 

This was an image from his 20 week scan. Even though it’s only an u/s image it’s still fun to compare to Remy. We did a side by side of Remy (top) and baby M (bottom) and we see similarities between the two already. 

Since the 20 week anatomy scan we had a 3D u/s done too at 27 weeks. He is still breach so it was hard to get many images of his face so we will be going back in the next week or so for more 3D’s. We like to comapare the 3D’s to Remy’s 3D’s too... mostly because it’s fun! The first image is baby M

The next two images are of Remy at the same gestational weeks.

I took a screen shot of those images from her 3D ultrasound DVD. Something we hope to get for baby M at our next 3D ultrasound. 

Things have been so extremely busy for us that Megan and I feel like this pregnancy is FLYING by so fast. There was a lot of stress with the move. Nothing over the top, just as it is for anyone selling and buying a home. It’s exciting sure.... but no one ever says it’s “fun”.

Before we moved we visited Philadelphia to celebrate mom-mom’s retirement from Ridley School district. 

We went to sister cities park, the Cathedral Basilica and then lunch at the Tap house. It was an AWESOME time. Shortly after that city trip my parents closed on their home in Ridley Park, PA. They moved into their new home just two weeks before we would settle on our new home in Ocean View, NJ. We didn’t move directly into our new home because there was A LOT to do to prepare for us to move in and if it weren’t for our family and friends we have no idea where we’d be at this point. 

Throughout the entire house we tore up rugs, removed old electric baseboard heating, removed popcorn ceiling, painted brown trim to white (3 coats!), painted every single room, door and ceiling! 

While we handled those things our AMAZING contractor Dave from Wisely Construction repaired the tape job in our addition, repaired ALL the wall area’s where the baseboard heating was removed and fixed with new molding and the biggest job he did for us was install over 1400 square feet of our beautiful flooring in days! Man was he quick! The guy really knows his stuff and luckily for many of my readers he’s local to Delco if you ever need anything I highly recommend him! Here’s a few before and afters. 

BEFORE

AFTER

BEFORE

AFTER

Remy’s new room

We still have some small things to work on like replacing ceiling fans with ones that match our decour, furniture for the extra rooms we have now, the nursery for baby M, and eventually new cabinets for the kitchen. Our new appliances have been ordered and the refrigerator is already here. We’re still waiting for our washer & dryer, and our dinning room table arrives Friday! Slowly things are falling into place. It’s a process that’s for sure! 

I hope everyone has been well! Happy Summer everyone!

[rlmerritt]

#shareifyoulikeit #remydaysthebestdays

[rlmerritt]

Just a girl and her Blankie