My sweet precious daughters. When I first decided to create this blog in 2012 and decided to keep it a secret until you were older, I knew this was going to be my greatest gift to you. I loved every moment of being a mom from the moment I was pregnant, to the moment that motherhood meant becoming a mom to two babies at once and then adding a third baby girl to the mix not even two years later. The moments, the experiences, the feelings, the smells, the tastes…all of it was so vivid and beautiful and I never wanted to forget a moment. I knew the details would fade over time and I always wanted to remember. More importantly, I wanted you to know how I felt being your mom and re-live the moments again.
The last few years there have been questions about what a certain event was like or what your first word was, and honestly I can’t remember some of the details like I thought I would. Every time I am asked, I think to myself I can’t wait until I share this gift that I have been working on in secret all these years.
I had a rough timeline of how long I would blog and I feel that we have reached that milestone. I’ll still continue to write or document in some capacity as you get older, but for now it’s time that themaddlife.com be a part of history you can enjoy.
I love you with all my heart and I truly hope that you cherish this priceless gift and these moments and memories forever remain close to your hearts.
This year the Foundation Fighting Blindness Vision Walk was again virtually. I decided it was time to share Avery’s story with some of the other neighborhood moms. The support was amazing…having received support from all, from joining us in the walk, to donating generously, to joining us in an evening “afterparty”.
When I told Avery I had shared her story, she naturally asked to read it. While I knew she needed to read it, I was a little concerned about her knowing how I felt early on. I shouldn’t have been. Avery slowly and carefully read her story and when she was done, she looked up at me and said so graciously and matter of factly, “Mom, I love my story.” It was so heartwarming. Later in the evening, I asked her what she meant by that. She said not only did she love what I wrote, but she truly loved her story because it was her life. Its been a few weeks since that moment and I think of it often.
Below is Avery’s story:
Avery was born alongside Emerson at 37 weeks, both weighing a healthy 6 pounds 7 oz. Avery rarely opened her eyes her first three weeks and when she finally did, we noticed spots. Several doctor visits later, she was diagnosed with congenital cataracts. Avery had surgery at 5 and 7 weeks old to remove the cataracts, one eye at a time. Surgery went well; we began daily eye patching and she began wearing specialized contacts made for kids without a lens. When Avery turned three months, she started rolling her eyes. I remember it vividly thinking what in the heck is she doing, not realizing at the time that she had no control over it. Back to the ophthalmologist we went and after seeing a specialist, Avery was diagnosed with nystagmus, an involuntary eye movement.
During the course of the next few years, we visited many specialists, traveling to various states to figure out the cause of Avery’s nystagmus because nystagmus is actually a symptom of many other underlying conditions. Avery was diagnosed with a number of other symptoms in addition to the cataracts and nystagmus to include microphthalmia (small eyes), small optic nerves, and low vision. She had bloodwork, genetic testing, and we seemed to be ruling out certain eye conditions, but not necessarily narrowing in on one.
Early on, Justin and I were an emotional roller coaster thinking our daughter could be blind and not knowing at the time what that meant or what her future would look like. While we continued to see specialists and search for answers, we became involved with the Foundation Fighting Blindness, not knowing what our little girl’s future held and wanting to do something. Our first Vison Walk was when Avery and Emerson were 9 months old. Justin and I did the 3-mile loop in Reston while pushing the double stroller.
Avery is now 9 and thriving. I wish I knew then what I knew now. Avery would have challenges just like every other kid, but she wouldn’t let her vision limit or define her. Avery dances, does gymnastics, rides bikes, played soccer, and even played softball for a season. She is smart, funny, always making new friends, and will talk your ear off given the chance.
We still have not been able to pinpoint an actual diagnosis; however, it isn’t something that pre-occupies us anymore. We continue to participate annually in the Foundation Fighting Blindness Vision Walk and to date we have done so fairly quietly.
Avery sees the world differently than most people. While that reality was initially devastating, it turned out to be a blessing. Avery taught me to see beauty where I didn’t know it even existed. She taught me to be more in tune with all my other senses…to appreciate the details, to feel, to truly smell the roses. Avery taught me to open my heart and my mind wider than I ever knew possible.
**Coincidentally a few days before the Vision Walk, Avery had her 6-month regular ophthalmologist visit and Dr. Seidman believes with a prescription change (increasing Avery’s bi-focal from a +2 to a +4 and decreasing her distance power from a +23 to a +21, Avery may be able to see even a few lines better than she is now, which by the way was 20/125 with both eyes! We are in the process of getting her new glasses now!
Robetha. The name of Avery’s blue robe…the one she has worn on a daily basis since receiving it nearly three years ago. Clothes off, untied, like she owns the place…that is how she wears it. Around the house, to the dinner table, and then thrown on her bedroom floor when not in use.
Going three years strong, with a goal of seeing Avery into old age!
It’s been nice having a break from writing any blogs the past few months. Easter was the first time I felt like I really missed it. Justin took out his big camera and took more pictures Easter than he had in a very long time! The pictures were fantastic. Seeing all the great pictures and not having a blog post to post them made me feel like I was missing writing. But then I thought about the technical difficulties the new blog format causes me when I upload pictures, and I all of a sudden wasn’t in a rush to write a post. I shared this with Justin in the hopes that in the next month or so we can look at the site together and figure out if the challenges are truly with the new software or if the challenges are attributed to the user herself!
Justin received a stuffed animal dog from his mom…neither us can recall exact time frame of when he received it from his mom, but we are thinking sometime in his early 20’s. It’s a grey dog intended to be a Weimaraner, but not sure that is truly what it is, but it is cute and flimsy. In our condo, it sat in our bedroom closet on a shelf and when we moved to our house, its home remained the same shelf in our new bedroom closet. The girls knew it was a gift from Justin’s mom, grandma Brenda, and that is why it remained so special to Justin. One day, Harper was having a hard time, so Justin let Harper borrow the dog. This happened several more times and finally Justin gave it to Harper, roughly three years ago. She began sleeping with the dog. At some point, she decided to name the dog….her name for the dog…Brenda. She believed it to be fitting and an easy choice….this way she would always remember Brenda.
Roughly 18 months ago, Justin’s aunt Rita (Brenda’s older sister) who Justin also considered to be more like his Grandma than his aunt, gave him three stuffed bears. She collected stuffed bears and was starting to clean out her house (something that seems to be increasingly common as people age) and she wanted each grandchild, great grandchild, nephews, nieces, great nephews, and great nieces to have one. Harper’s green stuffed bear became a fixture in her bed to keep Brenda company. And when it came to naming her stuffed bear, that too was easy for Harper….Rita of course.
So, each night for the last few years Harper sleeps with Brenda and Rita. Often when we tuck Harper in, we often tuck Brenda and Rita in too.
Last year when no one was getting haircuts due to COVID, Justin’s hair began to grow. Ironically when he got it cut in January a few months prior to COVID, Joe didn’t cut that much off. I remember Justin walking in the house and thinking, “did Joe even cut your hair?”
How ironic that when his hair was already at his longest, he wouldn’t be able to cut it anytime soon! While I did cut the girls hair last summer, and actually did a good job, cutting curly hair was not in the cards for him or for me! So he began to let it grow. And every month that passed, his hair obviously grew longer to the point that growing his hair became a project. It didn’t make sense to cut it before going to Asheville and then by then the new goal became the end of the year. By then, he was so close to a year so a year became the new goal. It was a fun project for sure and one that I’m not sure he will ever do again.
The many looks of Justin’s hair during COVID.
After over a year of no haircut and our first covid vaccine, Justin’s project came to an end!
While I have strived for much of this blog to highlight events, my blog post on the ordinary have been farer and fewer between, especially in recent years. And somehow I neglected to write about a very important part of family. Dinners, homerun dinners! Cooking…I love it, most of the time anyway. Of course we have some weeks where work is extremely busy and we have had pancakes or ordered pizza for dinner, but most evenings we cook. Sometimes I do some preparation on weekends and other times we make a delicious meal that day.
We eat together almost every night as a family and always have, even when the girls were little. For us as working parents, when they were little, we did not get home until after 5:00 and so bedtime was never earlier than 8:30 allowing us to eat as a family. The girls became accustomed to eating together and when we don’t, they generally are disappointed. Even with the girls sports and activities in recent years, we still managed to eat together, even it that meant eating dinner close to 8:00. (Family dinners have been somewhat challenged the past few months as the girls have taken on more sports commitments and there is now generally only one weeknight during the week that we don’t have a commitment if that).
They view pancakes for dinner fun occasionally, but only occasionally as we all take great pride in eating really delicious mouth watering “home run” dinners at least three to four times a week.
Home run dinners started probably around the time Ludmilla was with us and if dinner was so good, I would get up and the girls would take turns throwing me a pitch. I was always trying new recipes and there were a lot of homeruns. The funny thing is that a few years ago, the girls really didn’t eat a lot of the dinners I made, at least the main entrée. So, I would make sure they had some sides…fruit, and usually a starch to go along with the main entrée that they wouldn’t eat. And they too would think dinner was so good even if they weren’t eating the “homerun” portion. I think for them the “homerun” on those days was the camaraderie of us eating together as a family.
There was a time when food presentation was also huge and we would never eat our food hot as Justin and I were often trying to perfect who could plate the meal better and pictures were involved too. The girls even started to get in on the plating of their food.
Trying new recipes has been a constant since Harper was about 15 months and I even began a log by month of many of the exciting meals we ate for dinner. I regularly kept up with it until April 2020…we definitely did a lot of new recipes especially with baking during COVID, but with all the added responsibilities that came with the girls being home all the time, not being able to go out, I somehow stopped logging them. This is something that I commit to getting back to by the Fall when the girls are in school full time again.
Our girls are probably somewhat food snobs with certain things. I hope that they aren’t snobs but that we have helped them create a love for good quality healthy food and to appreciate food and the act of gathering together to eat it with family and friends.
Signing off as I sit here on a Sunday morning smelling the red wined braised beef stew that Justin is preparing for tomorrow’s dinner….it’s a new recipe, but from the decadent aromas, I am pretty certain it will be another home run dinner.
I find that I don’t regularly write about Avery’s vision. That is actually a good thing….her vision has remained stable over the years and actually improved in terms of numbers. She stopped patching 1 year ago and she is grateful for that. She gets her eyes checked every six months. She has been wearing the same glasses and prescription since the end of kindergarten! Her primary glasses are her blue glasses that have a bi-focal. Those have almost no tint so she sometimes wears her purple glasses, which have no bi-focal, but have some tint so are good for when being outside with a little sun or playing and not necessarily reading or doing schoolwork. She also has her sunglasses, which she wears if it is very sunny and bright outside. Her eye pressure has increased slightly over the years so we continue to monitor that. She receives one drop of latanoprost every night in her right eye to help with the eye pressure. She has probably been on that same dose of medication for four to five years now. Her ophthalmologist, Dr. David Seidman, doesn’t regularly provide me with her latest vision numbers, but she most definitely sees the chart at 20/200 or better often seeing things in the 20/150 range.
She is a trooper, she knows she doesn’t see things as others do….sometimes it bothers her….for example when we are looking at deer in the woods of our backyard or there is a person in the distance and she can’t make out who it is when everyone else can, but for the most part, Avery knows and accepts that it is her normal. And as she reminded me the other day when her, I, Emerson and Harper were sitting at the kitchen table looking out the window, it can be a blessing….for she couldn’t see the neighbor’s dog taking a dump. Roses, my friend, roses. Avery continues to see the rose instead of the weed…she truly finds the silver lining with her vision and that is a true blessing.
While the girls have had a rotating room schedule since they were babies, I have never written about it.
Avery and Emerson shared our second bedroom in the condo when they were born. The room which had previously served as our desk/computer area and futon/TV/Nintendo area quickly became a thing of the past when we replaced it with two cribs and a dresser. When we moved out of the condo when the girls were 8 months old, they shared a room (my old bedroom) in my parent’s house. When Harper came along, she slept in a pack-n-play in the bedroom that Justin and I had at my parent’s house (my sister’s old room). When she was three months old, she moved to her “nursery” which was the fourth bedroom in my parent’s house. We rearranged the furniture and somehow managed to fit her crib and a new dresser while also keeping a full bed in that room. When we moved out of my parent’s house when Avery and Emerson were 2 ½ years old, Emerson and Avery shared a room…not the biggest room, but a nice size room that had a floral mural on one side. At six months old, we gave Harper the room next to Justin and I, which happened to be the largest room. They kept those respective rooms for about 2 ½ years.
New Year’s Weekend when Avery and Emerson were in kindergarten, we decided it was time to get them big girl beds. We had long turned their cribs into toddler beds…in fact, I think we did that shortly after we moved into our house. Two twin beds wouldn’t fit in their current room so instead of swapping rooms with Harper, I thought why not have all three of them share a room. Justin initially thought it was a horrible idea, but it turned out to be a great one…Avery and Emerson in their new twin beds and Harper in her toddler bed…all in one room. Avery and Emerson’s old room became the upstairs “playroom/reading room”. They shared that large room for two years, when Justin and I bought ourselves a new bed…an upgrade to a king from a queen…we even bought ourselves a headboard! Harper was going to need a twin bed soon herself as she was 4 ½. I realized we could avoid having to buy another twin bed if we to put our old bed in the playroom/reading room and turned it back into one of the kid’s bedrooms. That is when we began the rotational room shift every 6 month….for 6 months each girl got a chance to have her own room and each girl got a chance to share a room with each sister alone. We did that for two years….each girl loved when it was their turn to have their own room. They weren’t always ready to give it up, but it did make them appreciate even more the time when they had their own. They have different habits as well…Emerson neater than Avery. Avery somewhat a slob. Harper in the middle. Sleeping with a nightlight, sleeping without a nightlight, sleeping with the door open, sleeping with the door closed…each girl had their preferences and there were often disagreements when various preferences had to come to a compromise.
We did the rotation for exactly two years and as we were getting ready to do it again, the girls, mostly Emerson though, as she was the one who would be “losing” her own room with the next switch, kept begging for their own rooms. We do have four bedrooms but when our au pair bedroom was no longer needed as an au pair room, I took it over as my office as I was now working from home full time. Justin and I were hesitant to give our current office spaces, but we decided to give it a try. We once again moved furniture from room to room and the old au pair room/my old office became Emerson’s new room. It’s small but super cute and reminds us of a dorm room. Meanwhile, Harper has the mid-size room with the queen bed and Avery the largest room which has two twin beds in it and extra space for making large messes and doing gymnastics.
The girls may certainly share a different view of sharing a room when they get older, but I truly hope that having the opportunity to share as a threesome, as a double, and to have a single gave them unique experiences which they will forever be grateful.
I decided to “end” this blog. It is no longer user friendly and it causes me much frustration in trying to create a post, especially a post with pictures. I’m also nearing the time when I will be sharing the blog with my girls, a gift to them that I have been working on the last 8 years! And I’m not sure my writing will be as honest and real knowing that I’ve gone “public”.
With that being said, even though I am “ending” it in the current format of which I have kept up with it the last 8 years, which is regularly two blog posts a month, I realized that there are still a few stories that I never shared. SO…I’ll have a few more posts this year, likely without pictures, but with special stories.
