One year in.
One year ago, I was sitting in the hospital where we'd just stayed the night. That morning, I was wearing a baseball-style tee with pink 3/4 length sleeves, and in script on the front, it said "though she be but little, she is fierce."
The team of doctors came in and said the words. MRI. Vanishing white matter. Leukodystrophy. Terminal. No cure. Comfort. Genetic. "You need to have your other children tested immediately."
Ian was at work. After months of no answers, he'd left the hospital room that morning sure that it would be another day of no answers. I encouraged him to do so. Now, I could not believe I was getting that information by myself. Alone. No broad shoulders to cry into. No strength to lean into. No eyes to look into but Charlotte's. "I'm so sorry baby." and lots of "Oh my God. Oh my God."
Maybe other people thought she could be dying. Maybe it was easy to look from the outside in and think the news would be grim. Maybe I'm dumb, too "surface," too positive, too cheerleader-y, too rose-colored glasses.
But maybe I'm just a mom who saw a perfect daughter and had all the hope in the world that all would be okay.
In the past year...
I have learned how to fight for my family
I have learned to be trusting but not too trusting
I have learned the benefits of Medicaid and why I had to fight to get CAP-C support
I have learned when to say "thank you" and when to say "we need more"
I have learned to say no thank you
I have learned that it's okay to not eat your food using your mouth
I have learned that it's okay to feed your children in different ways
I have learned how to operate a feeding tube and pump, how to change out an extender
I have learned which type of extender I love, which pump I love
I have learned how to not freak out when a feeding tube pops out of the belly
I have learned how you have to be careful because there's now a hole opening up to the stomach
I have learned how to replace it with a new one. You need patience, bravery and lube
I have learned how to creep in at night and set up a nighttime feed
I have learned that medication is pretty darn easy to give by tube feedings
I have learned which syringes I love to use
I have learned what "flush" means
I have learned how to measure in CCs
I have learned how many CCs flush down meds
I have learned how to change a diaper when you can't bend the legs up anymore
I have learned which diaper covers fit a 3 year old for modesty and to "look like the other girls"
I have learned which shoes can fit a 3 year old with feet that no longer work in regular shoes
I have learned which outfits I need to let go of for her, like rompers or anything tight or hard to put on
I have learned how she needs to sleep at an incline (aspiration risk)
I have learned how weighted stuffed animals are heaven-sent
I have learned how to connect and read a pulse oximeter
I have learned what do to when it alarms loudly at night
I have learned how to get by on little or interrupted sleep
I have learned that my sleep is underrated
I have learned that two cups of coffee is really my max
I have learned that two glasses of wine is really my max
I have learned what a pulmonologist, neurologist, gastroenterologist can do for her
I have learned the difference between physical therapy and occupational therapy
I have learned how to help her ride as comfortable as possible in a carseat
I have learned the blessing of a family beach trip
I have learned that some things I used to complain about are actual blessings
I have learned what continuous oxygen means
I have learned what skin breakdown signs are
I have learned how to sleep while someone walks around your house
I have learned how to schedule in advance when a nurse is relying upon you to do so
I have learned how to schedule impromptu calendar changes and ask for forgiveness
I have learned how to read minds
I have learned how to read a pulse-ox to see if my daughter is happy
I have learned how to read a pulse-ox to see if my daughter is scared
I have learned how to teach a long, deliberate blink for "yes"
I have learned how to operate a suction machine
I have learned how to operate a CPT (shaky) vest
I have learned how to operate a cough-assist machine
I have learned how to operate a nebulizer
I have learned how to operate a stethoscope
I have learned her target heart rate and relaxed heart rate
I have learned her seizure protocol
I have learned what hospice does
I have learned what therapists can help with
I have learned when to rely on family/girlfriends and when to rely on therapists
I have learned the beauty in connecting with other MLD moms
I have learned the sadness in connecting with other MLD moms
I have learned how sweet the words "mama" sound
I have learned how to etch that sound into my memory
I have learned to record everything on my busting-at-the-seams phone
I have learned not to take a moment for granted
I have learned not to expect anything
I have learned to look for hidden blessings
I have learned to look for Godwinks
I have learned to listen more than I talk
I have learned that childhood is fleeting ... it really is
I have learned that family is everything
I have learned that stuff is just stuff
I have learned that a year can make the difference of a lifetime.
Thank you for allowing me to vent some stream-of-consciousness emotions this evening. A very important evening in our family.
And for multiple reasons ... Lochlan (nearly 14 months) started really REALLY walking tonight. Thank you Lock for choosing such a special date that we will always remember, buddy.
Thank you all for listening, reading, and caring.
XOXOXO
Wednesday
Tuesday
Charrie's Birthday!
I can't believe Charlotte is THREE!
On one hand, she still feels just so much like my little baby. On the other hand, I feel like we have experienced so much LIFE with her that it's hard to think that she's "only" three.
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If you've read here for a while, you know that we didn't know whether she was going to be a boy or a girl. We decided to keep it a surprise. My one request was that Ian would be the one to tell me the moment she was born if it was a girl or boy. I will never forget his words, "It's another girl!" I loved that choice of words because it immediately linked the two girls together in my mind. I pictured them dressing alike, playing dolls, sharing a bedroom (which they did, even if just for a couple of months).
The bond between Camille and Charrie is definitely strong and you can tell that Char just thinks big sis hung the moon.
For Char's birthday party, we wanted a beautiful little celebration with some of our closest friends and neighbors. I didn't want it to be overwhelming for her, and I also didn't want us to lose sight of what we really needed to focus on -- our birthday girl! You know how it can be when you have these mega parties, you're so busy entertaining and running around that you miss out on some of the sweetest, most special moments.
One of the local nonprofits that has been SO good to us, The Sandbox, is the force behind all of the party logistics. The founder, Mara, worked with her team so make this as smooth and easy for us as anyone could ever hope for. I was out of town leading up to Char's birthday, so they took the reigns and made everything come together -- ordered the cake (I just texted them some inspiration photos), brought over trays of Chick Fil A nuggets and drinks, ordered the flowers (I just told them what flowers reminded me the most of Char), picked up the cookies generously donated by Sugary Smiles, provided us with a photographer, I mean the list just truly goes on and on.
Charrie girl, you are THREE. You give the most magical smiles and you have always been the best little girl. We all love you so very much Char. Here's to many more birthdays!
On one hand, she still feels just so much like my little baby. On the other hand, I feel like we have experienced so much LIFE with her that it's hard to think that she's "only" three.
If you've read here for a while, you know that we didn't know whether she was going to be a boy or a girl. We decided to keep it a surprise. My one request was that Ian would be the one to tell me the moment she was born if it was a girl or boy. I will never forget his words, "It's another girl!" I loved that choice of words because it immediately linked the two girls together in my mind. I pictured them dressing alike, playing dolls, sharing a bedroom (which they did, even if just for a couple of months).
The bond between Camille and Charrie is definitely strong and you can tell that Char just thinks big sis hung the moon.
For Char's birthday party, we wanted a beautiful little celebration with some of our closest friends and neighbors. I didn't want it to be overwhelming for her, and I also didn't want us to lose sight of what we really needed to focus on -- our birthday girl! You know how it can be when you have these mega parties, you're so busy entertaining and running around that you miss out on some of the sweetest, most special moments.
Having the party in our backyard allowed us all to enjoy the outdoors and the kids could play on the swingset, swing in the hammock and enjoy the big tree swing (this one, because I always get questions about it!).
It really was the perfect day just filled with love.
And can we even discuss that cake. I mean ... exquisite. Just sweet and lovely like Char. There was strawberry filling on the inside.
Charrie girl, you are THREE. You give the most magical smiles and you have always been the best little girl. We all love you so very much Char. Here's to many more birthdays!
Friday
Five On Friday!
It's time for another edition of Five on Friday!
O N E
Valentine's Day is on the books! We had a really nice one. Camille had preschool in the morning. Later in the afternoon, we had our special visit from the Valentines Man who rings the doorbell and runs away SO fast before you can even see him. Sadly, I happened to be running a diaper to the trashcan when he rang the doorbell so the kiddos had to wait for me to come back in thru the garage before we went to the front door (whew). :) He left chocolates!
Camille's favorite dinner is ... breakfast. So she got scrambled eggs, heart-shaped pancakes with heart-shaped strawberries. Lochlan had a deconstructed version of the same.
T W O
I'm trying something new and adding in some collagen to my daily regime. I add a packet into my coffee in the morning. You can't taste a difference at all. I've been so curious to give it a shot after seeing some of my favorite bloggers using it daily. Here it is on Amazon.
I'm trying something new and adding in some collagen to my daily regime. I add a packet into my coffee in the morning. You can't taste a difference at all. I've been so curious to give it a shot after seeing some of my favorite bloggers using it daily. Here it is on Amazon.
T H R E E
Sometimes you just need a little Panera in your life to make it a little easier. This is the Mediterranean Veggie sandwich, which I just love, but I subbed out the greens for arugula and got it on foccacia instead of the tomato bread. This is going to sound so specific but they changed the tomato bread they were using and I'm just not a fan of the new one.
Sometimes you just need a little Panera in your life to make it a little easier. This is the Mediterranean Veggie sandwich, which I just love, but I subbed out the greens for arugula and got it on foccacia instead of the tomato bread. This is going to sound so specific but they changed the tomato bread they were using and I'm just not a fan of the new one.
F O U R
Yes, this is a thing. There is a podcast done by ... Ron Burgundy. I'll give it a solid B, definitely worth a listen when you are up for a little laugh.
Yes, this is a thing. There is a podcast done by ... Ron Burgundy. I'll give it a solid B, definitely worth a listen when you are up for a little laugh.
F I V E
Cheers to a great weekend! We don't have much on the books today but I am going to attempt library storytime if I think I can make it in time. Those librarians, they don't play. Two minutes late and they look at you like you've lost your mind. Doors LOCKED and no storytime entry. That's okay, I love them anyway and love that they encourage me to (try to) be on time.
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That's it for today! Hope you have a lovely weekend!
Five On Friday ... Feb Eighth.
It's time for another edition of Five on Friday and I do hope you'll join along!
O N E
The weather has been fahhh-bulous this week and we enjoyed some screened porch time! Charlotte's new wheelchair is so supportive for her and makes it easy to have her all over the house with us. Thank goodness for this. I call it her Kate Spade chair, check out the black and white polka dot design! So chic.
T W O
You may have seen this on my Instastories the other night! Walmart grocery pick-up for the win. Grab some frozen breaded shrimp and a bottle of their "Boom Boom Shrimp Sauce" and you've got a copycat Bang Bang Shrimp appetizer for all of you who love this infamous Bonefish Grill dish. It's easy to whip up (it's Friday night now and Ian and I just polished off a little bowl of this) and super inexpensive.
If you want a code for $10 off your first Walmart Grocery order, message me on Insta.
You may have seen this on my Instastories the other night! Walmart grocery pick-up for the win. Grab some frozen breaded shrimp and a bottle of their "Boom Boom Shrimp Sauce" and you've got a copycat Bang Bang Shrimp appetizer for all of you who love this infamous Bonefish Grill dish. It's easy to whip up (it's Friday night now and Ian and I just polished off a little bowl of this) and super inexpensive.
If you want a code for $10 off your first Walmart Grocery order, message me on Insta.
T H R E E
Sisters connecting. Thursday night. Good times.
Sisters connecting. Thursday night. Good times.
F O U R
My friend Caroline has the BEST recipe for brussels sprouts and the key truly is in that last splishy-splash of white balsamic vinegar. It takes your dish from "roasted brussels sprouts" to "holy moly salt and vinegar potato chips brussels sprouts" in an instant. Don't be afraid to be heavy-handed with that white balsamic vinegar and parm cheese. Makes allllll the difference.
My friend Caroline has the BEST recipe for brussels sprouts and the key truly is in that last splishy-splash of white balsamic vinegar. It takes your dish from "roasted brussels sprouts" to "holy moly salt and vinegar potato chips brussels sprouts" in an instant. Don't be afraid to be heavy-handed with that white balsamic vinegar and parm cheese. Makes allllll the difference.
F I V E
Posts this week are Charlotte-heavy and I know you're not hating it (I'm not either). The truth is that it has been a really sad week for me, a week of feeling really depressed. I've met with my therapist, I've explored grief groups, and I've connected with girlfriends locally who are the real "boots on the ground" types of people. I'm doing okay now. Sometimes I just slow down enough to let life hit me and actually let the feelings seep through the hard exterior. That happened this week. I'm okay now and I don't need anything, just wanted to be transparent about what's happening.
Posts this week are Charlotte-heavy and I know you're not hating it (I'm not either). The truth is that it has been a really sad week for me, a week of feeling really depressed. I've met with my therapist, I've explored grief groups, and I've connected with girlfriends locally who are the real "boots on the ground" types of people. I'm doing okay now. Sometimes I just slow down enough to let life hit me and actually let the feelings seep through the hard exterior. That happened this week. I'm okay now and I don't need anything, just wanted to be transparent about what's happening.
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That's it for today! Hope you have a lovely weekend!
Thursday
Lochlan Is EIGHT Months
Lock-dock, eight months! You are a joy, a ray of sunshine. You're exactly what we needed -- a dose of happy.
You are 20 pounds, a big boy! Everyone loves exclaiming over how big you are. You're taking four 8-ounce bottles a day, 7:30/11:30/3:30/6:30, and when that last sip is gone and you suck down a puff of air, you CRY like you've been stung by a bee. You simply do not like it when you finish your milk!
We had you on donated breastmilk through November and then moved to formula before our Disney trip. This was the first time I've ever given a child formula, and man oh man is it expensive! Ha! But you made the switch beautifully and I think it's pretty obvious that you haven't missed a meal.
Speaking of meals, you like purees okay, but you love soft table food. You've eaten a lot of "real" food including eggs and peanut butter. You just want to be a big boy.
Sleeping is great, for the most part you're sleeping 7-7/7:30 without needing me in the night. Awesome awesome child.
You are in size 3 diapers and size 4 at night. You're still in a Merlin's Magic Sleepsuit but I think you're ready to transition to a sleepsack. For clothing, you're in size 12 month clothing mainly.
You still love a good ol' swing nap but I'm trying to be better about encouraging your naps to take place in a crib. Naps are around 10am and 2pm.
You're rolling from your back to your tummy and have given us words like "mama" and "dada" but they're not consistent. Yesterday you waved for the first time!
I love my days with your sweet face and you bring so many smiles to everyone in our family.
Tuesday
Italian Wedding Soup
Italian Wedding Soup, aaahhhh! This is a recipe my family has been making for years. The first time my mom made it for us, she printed off the recipe from Prodigy (anyone? anyone?) and we all fell in love. That was 1996, I was fourteen years old.
I made this for dinner for us last night and it was phenomenal. Easy to put together and just like a warm bowl of cozy.
I served it with finger salads which is another recipe I swiped from my mom, who found it on Pinterest. (recipe here -- I didn't change a thing to the homemade vinaigrette, but I did add BACON!)
1 quart chicken broth
2.5 cups water
3/4 cup Acini di Pepe pasta (Amazon)
1 teaspoon fresh parsley (I subbed for dried)
1-2 carrots, sliced thin
1/4-1/2 lb spinach, washed, julienned (I put in part of a packet of frozen spinach)
Frozen meatballs of choice (I used 20 meatballs)
1 egg + 1tsp water
Bring first six soup ingredients to a boil; drop frozen meatballs right into soup. Beat 1 egg and 1 tsp water in a small bowl and stir boiling soup as you slowly drop in the egg, stirring constantly. Cover and turn off heat; let sit for 2 minutes. Serve with grated parmesan or romano cheese.
Oh, and enjoy with wine.
I made this for dinner for us last night and it was phenomenal. Easy to put together and just like a warm bowl of cozy.
I served it with finger salads which is another recipe I swiped from my mom, who found it on Pinterest. (recipe here -- I didn't change a thing to the homemade vinaigrette, but I did add BACON!)
So now, let's get back to the soup.
I T A L I A N
W E D D I N G
S O U P
2.5 cups water
3/4 cup Acini di Pepe pasta (Amazon)
1 teaspoon fresh parsley (I subbed for dried)
1-2 carrots, sliced thin
1/4-1/2 lb spinach, washed, julienned (I put in part of a packet of frozen spinach)
Frozen meatballs of choice (I used 20 meatballs)
1 egg + 1tsp water
Bring first six soup ingredients to a boil; drop frozen meatballs right into soup. Beat 1 egg and 1 tsp water in a small bowl and stir boiling soup as you slowly drop in the egg, stirring constantly. Cover and turn off heat; let sit for 2 minutes. Serve with grated parmesan or romano cheese.
Oh, and enjoy with wine.
For more of my RECIPES click here
