Celebrating World Down Syndrome Day by Sharing Our Diagnosis Story

Well, this post is LOOONNNGGG overdue, considering my son is now nine months old! I had every intention of writing this post last Spring after I had time to process all my feelings, but then COVID happened. And then Logan was born. And then I went back to work. And then it was the holidays. You get the picture. So I'm here now, on World Down Syndrome Day, to share our diagnosis story and journey thus far.

My husband and I tried to conceive for over a year before getting pregnant with Logan. We had a previous miscarriage before our eight-week ultrasound, so when we made it to ten weeks and the point when they do prenatal genetics testing, we were beyond excited. We knew there was a chance of a genetic disorder due to my age but didn't consider it much. We just wanted to know the gender so we could start planning.

I received a call from my doctor's office the Friday before Christmas. It was a nurse from my OB's office with the results of our prenatal testing..."89% chance of having Trisomy 21" was all I heard. I sat and cried while the life I dreamt up of our family was being erased one image at a time in slow motion: vacations to the beach, birthday parties, first-year milestones of rolling, crawling, walking and first words, playing with cousins, the moody teenage years, first dances, graduations, weddings, grandkids. My heart broke as every image flashed in my mind. And now I had to go home and break the news to my husband.

I knew how my husband felt about having a child with special needs. I was crushed to be the one to cause him so much pain. While the details of that conversation are very much a blur, I remember lots of crying, sitting in silence, staring, and more crying. We told our families over text messages because we couldn't bear to say the words out loud. We ditched our gender reveal plans and backed out of our usual Christmas events. We just wanted/needed to grieve.

We thought if we proceeded with this pregnancy, our child would need care into his adult life. There would be a high chance he would have medical issues and need painful surgeries. His intelligence would never be more than that of a seven-year-old. He would have speech impairments if he could even speak at all. He wouldn't even look like us. And more than anything, we were devastated about how our child might be viewed by our friends, other parents, other children, and the world. These assumptions were all wrong, but at the time, those were our fears.

My husband and I were at odds on how to proceed. If I got my way, would he resent me? If he got his way would I resent him? Both options seemed like it would end in divorce. It felt like our world was crumbling. We were in a pretty dark place for a few weeks. There were tears every day. We pleaded with each other, tried to strike deals, tried using research and facts to change the other one’s mind. We were painfully honest and vulnerable with each other. And at times, it didn't seem like our marriage would survive. But somehow, we came out the other side, and after confirming the diagnosis through amniocentesis, we were ready to move forward with the pregnancy one day at a time.

My pregnancy was so different than I imagined it would be. It was harder to celebrate the milestones, the first kicks, a growing belly, decorating his nursery, while not knowing what the future would hold. During every ultrasound, I held my breath, praying for a good report. And then I had to see the faces of pity and caution when the ultrasound tech and doctor would remind me my child had Down syndrome like I didn't already know.

I not only had to research how to care for a newborn, how to care for myself after delivery, and what labor would be like, but I also had to research what to expect when caring for a child with Down syndrome. I had this weight on my shoulders to be the one with all the knowledge. I guess that was the mother in me coming out. I had to educate my husband and our family members to be prepared for his arrival. What might his limitations be? What health issues might he have? What were the best products and toys for his development? What bathtub, car seat, and high chair were best for a baby with low muscle tone?

I wanted to be super prepared and educated and know all the possible issues so I wouldn't be caught off guard like I was with his diagnosis. Doing the research helped me cope. It helped me feel strong enough to bear the weight of all the decisions, the fears, and the disappointments.

Now that Logan is here, I can say with 100% certainty that our world is better with him in it. I had no clue what unconditional love was until I held him in my arms. The moment I met my little Logan boy, all my fears, worries and disappointments disappeared.

We are only nine months into this crazy ride, but Logan is more like a typical baby than he is different. He eats, sleeps, poops, and plays. He gets fussy and cries when he's hungry. We've dealt with very common baby issues like reflux and constipation. And as for his appearance, he does have characteristics of a person with Down syndrome, but he also looks very much like us. He has my husband's big blue eyes and long eyelashes. He has my fair skin and expressive face. Some days he looks just like our nieces and nephews and siblings.

Logan may take a little longer to reach certain milestones, but he does eventually conquer them. And those moments are even sweeter when he does because it's clear how much harder he has to work to achieve those milestones.

I will share that it's not all rainbows and sunshine. Every week, we have physical therapy and occupational therapy sessions to give him the best shot at hitting his developmental milestones. We have doctors' appointments and medical tests to ensure he remains a healthy, thriving child. We are more cautious about changes to his usual pleasant demeanor because seeing potential medical issues at every turn is part of the journey now. And sometimes, it's all overwhelming. But one look at Logan, and the overwhelm doesn't matter.

I have no idea what his strengths or opportunities will be as he gets older, but I know that I am all in. I will be his biggest cheerleader and help will achieve whatever goals he sets. I will advocate for him in any way I can because his life matters, and he deserves to be treated with kindness, love, and respect regardless of his genetic composition.

I truly believe Logan was brought into our lives to teach us how to be kinder, more patient, and more accepting. Down syndrome was not represented in our family, but now our nieces, nephews, and friends' children will all get to grow up knowing a person with Down syndrome and be better people for it. Logan has changed our world in so many ways and he doesn't even know it.

If I could go back to my past self and tell her one thing, I would say: "Stop robbing your present joy by worrying about your future life. It will all be okay. The love you will have for your child will outweigh all your fears. He will change your life in so many amazing ways. You will be filled with joy and pride every single day just by looking at him".

2020 Goals ... Better Late Than Never

Hi Everyone!

I know it's been a while since my last post, but life has had me on an emotional roller coaster these last eight weeks. I tried to use January as a reset month to get back on track with health, fitness, blogging, and setting goals for 2020. But life had other plans, and none of that happened. So here we are halfway through February, and I'm just getting around to sharing my 2020 goals. But before I share my 2020 goals, I wanted to let you in on one of the reasons I haven't been so consistent with my blog posts.

We're having a baby!!! And it's a boy!!

I won't go into too much detail except to say I am currently 21 weeks pregnant, and we confirmed a few weeks ago our little boy has Down syndrome. I don't want this post to be super long, and I want to give proper care, and attention to the topic of Down syndrome and my feelings about this pregnancy so keep checking back, or better yet, subscribe to my email list to get notified when a new post goes live. I plan to write about my first-trimester experience, how we found out about the Down syndrome diagnosis, and my initial reaction and current feelings about his diagnosis. Not to mention the fun stuff like nursery reveal and registry must-haves. Now on to my 2020 goals.

2020 Goals

#1 goal for 2020 = Survive the year

Ideally, I would like to come out of 2020 more than just surviving, but I also don't want to have unrealistic expectations. Having a new baby, especially one that may have medical complications and additional needs, is a huge undertaking, and I'll be happy to end the year with everyone still alive and bathed and fed at regular intervals, hence survival.

I started thinking about how I could put myself in the best possible position for survival once he arrives. I kept coming back to the word "healthy. Not only physically but emotionally, mentally, spiritually, and creatively. And for me being healthy in all these areas means better choices for meals, getting in 30 minutes of activity (almost) every day, reducing stress levels, maintaining relationships, and doing activities I enjoy. So my other goals for 2020 are focused around being healthy to ensure survival.

Goal #2 - Maintain/refine routines & Get back to habits that have gone astray

I am not naive, and I know that I will be at the mercy of a tiny human and his schedule in the back half of the year. BUT I thrive on routine and structure. So I know the habits I can put in place today or in the next few weeks will help me keep some structure in my day post-baby. This goal is an overarching goal with a few sub-goals.

#2A: Maintain Current Routines

A weekly cleaning routine - I already have a system in place to ensure my household chores get completed and have started thinking through what additional tasks I'll need to add to my week (or pass off to my husband) once little man is here.

Bill paying routine - The same goes for paying bills. I pay bills twice a month and in two-week chunks of time on the same day of the week both times. During my second bill paying session, I also review spending for that month and move funds into other "buckets" for household projects, savings, etc. I know I could take it even further and set most of my bills to auto-pay, but then I lose sight of what bills are due when and wouldn't pay too much attention to our spending. Sitting down for 30-40 minutes to review the balance of each invoice, schedule a payment, and move around the remaining budget gives me a sense of peace and control. I like to know where and when our money is coming and going.

A morning routine - Monday - Friday, I wake up about an hour earlier than necessary. I have some quiet time with my cats, do a 20-30 minute workout or some easy stretching if my body isn't feeling it that morning, a 10-minute meditation using my Calm app, and some journaling or reflecting on an oracle card if there's time left.

Having this time to be quiet and get centered before the craziness of the day makes such a difference in my outlook, mood, and energy levels. I'm more positive, friendly, and flexible at work, and I can make it through the day without an extra cup of coffee, no problem. It also makes a difference in my relationships with co-workers, friends, and, most importantly, my spouse. When I feel mentally and physically ready to take on the day, I am more loving and kind to the people in my life.

#2B: Get Back in the Habit of Previous Tried and True Routines

Meal Planning & Prepping - Before October, I had a routine of meal planning, grocery shopping/order pick up, and meal prepping. But the first-trimester exhaustion and then the holidays completely threw this routine out the window. I want to get back to having a meal schedule and prepping lunches and dinners ahead of time. Even if it's just chopping veggies and knowing what protein to take out of the freezer and when. That will be a huge help to cooking clean meals and spending less money eating out because something didn't thaw out or I don't have an ingredient for a recipe.

Goal #3: Put New Routines in Place

Blogging a.k.a. my creative outlet - The one routine I can't seem to nail down is for blogging. I've tried to set aside time after work for blogging tasks, but I don't have the motivation to sit in front of a computer after I've spent all day in front of monitors. Also, my evenings (after cooking dinner and doing my daily chore(s))are for spending time with my husband and cats, and soon my son.

I've also tried doing blogging on the weekend. But other activities, usually at the request of my husband, or an unexpected day of beautiful weather, take priority over blogging. So again, I end up not sticking to my routine or plan, which is why I haven't posted consistently since November. Life always seems to get in the way. The main objective of this goal will be to figure out how blogging fits into my life and how much or how little time I can truly devote to maintaining my site.

Goal #4: Plan for baby and educate myself on Down syndrome

I think planning for baby's arrival is everyone's goal when they find out they are expecting, especially their first child. I need to create my registry, decorate the nursery, sign up for the newborn and labor classes, and ensure we are financially in a comfortable place. These are projects all on their own, and if I think about them too much, I quickly become overwhelmed.

On top of the projects I just mentioned, I have quite a lengthy list of tasks to prepare myself for a child with Down syndrome. I want to read as many books as I can get my hands on. I have to attend the additional medical appointments. I would like to get in contact with local support groups, research early intervention specialists, and learn what financial assistance is available versus what we will need to plan for financially. Serious overwhelm thinking of ALL THE THINGS!

My Top 3 Priorities

I know I said survival is my numero uno, but when I go back and look at the goals I’ve laid out, planning for baby, meal planning and prepping routines, and figuring out what works best for me in terms of blogging are my top 3 priorities over the next five months.

I know meal planning and prepping will be the easiest of the three since I did have a solid routine for quite some time. And I do some meal prepping Sunday mornings already.

Blogging will come down to better planning and scheduling specific tasks to work in 15-30 minute increments rather than trying to hammer out a full post in one night...much like I am doing now.

The baby planning, well, I know that project will reach a finish line sooner or later whether I'm ready or not. I'd rather be prepared, but if I'm not, I'm pretty good at learning on the fly. And like I said, as long as we all end 2020 alive, bathed and fed I'll consider this year a win!

Advice, Tips, I’m All Ears

Please. I want to know. How did you plan for your child with or without additional needs?

Do you have a blog or a creative hobby? If so, how do you find time to work on it?

Any other tips that would help me survive in the months after our child is born?