We had beautiful weather this weekend, even though there was a hint of Fall in the air. It was the first and last time this year that I got a little bit of a sunburn!
Friday after work, Pete met up with me and my coworkers for a game of flag football. I chilled on the sidelines with Hannah and Gamy and two girls from another department. It was fun to relax and talk to people I don’t interact with much during the week. Pete had a blast playing and was sore for two days. Hopefully they’ll play again before it gets too cold to be a spectator.
Saturday was our first Buddy Walk experience! We carpooled with Pete’s mom and met up my parents, my friends Meghan, Steph and JP, and their son Lucas. As soon as we arrived I realized how underprepared we were. Teams were setting up their tents, grills, tables of food and we had blankets and chips & dip. It was amazing to see how large some of the teams were and how many supporters there are in a smaller state like Connecticut. The top team raised over $10,000 for the CDSC and our little team managed to raise $1150!
Hannah fell asleep during the actual walk and continued to nap through lunch time. We ended up sitting on the far end of the field, away from everyone else, because we had no chairs and the picnic area provided some much needed shade. After my parents and our friends left, Pete, Grandma, Hannah, and I went for another walk to enjoy the sunshine, then did a lap around the field to check out the bounce houses.
Unfortunately the Buddy Walk wasn’t all I wanted it to be. I had a bad morning and was in a really crappy mood by the time we arrived. I already have a hard enough time meeting new people and couldn’t work up the strength to introduce myself while I was fighting my own negativity. I wanted the day to be about Hannah and meeting members of the community but instead I was focused on outside distractions.
On Sunday Pete went fishing and I stayed home with the sick Banana. After spending a week trying to fight off her first cold, Hannah finally surrendered and has been sick since Wednesday. Last week was the worst, with congestion that was affecting her ability to drink a bottle, a temperature just under 100*, and a couple restless nights. I’ve noticed a big difference since we put a humidifier in her room but the new cough she has makes her sound worse. I hope I’m not under reacting to Hannah’s cold but she seems to be handling it just fine. She still wakes up with a smile, still wants to play and roll around, and still sings to me after school. She’s fighting it like the little warrior that I know she is.
A few months ago, thanks to Instagram, I came across an awesome Etsy shop called Jumping Jack Apparel. The shop features graphic tees, headbands, and prints for moms and kids. Unfortunately, or fortunately for our bank account, headbands and Hannah’s noggin don’t cooperate quite yet so I haven’t had to make the painfully difficult decision of which ones to purchase.
I wanted to buy one of everything but finally settled on the “I Believe” tee and the gray “Favorite Reason” tee. The shirts are super soft and the screen printing has handled multiple washes without fading or cracking. I’ve received a bunch of compliments on both shirts, one young woman telling me “you are my favorite reason to never give up” would make a great tattoo.
The more important reason why this is a favorite is due to the story behind the shop. It’s heartbreaking but a beautiful to tribute to their son…
My name is Sarah and I created Jumping Jack Apparel in honor of our son Jack. He was diagnosed with SMA or Spinal Muscular Atrophy, at just 6 weeks. My husband and I (unknowing at the time) carry the gene responsible for SMA. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Jack became weaker each day. He never held his head up, and eventually lost the ability to cough, swallow, eat and breathe. He never sat up, he never took his first steps. He never said “Mama” or “Dada”. In the beginning we made tag blankets and crinkle toys since Jack was able to hold them with his weak muscles. We sold them on our Easy site as crafting was very therapeutic for me. The first headbands we made were also for Jack to help hold his oxygen and feeding tube in place. Jack took his last breath in my arms at 6 1/2 months old. He is the bravest boy I know.
Is that not the most beautiful face you’ve ever seen? You can learn more about SMA here. $5 from every “Favorite Reason” tee is donated to the Gwendolyn Strong Foundation, a nonprofit dedicated to raising awareness of SMA, funding research, and providing support to families.
You can find Sarah’s Easy shop here. She’s also on Instagram @shopjumpingjack and on Pinterest.
Since I started writing (long before actually starting this little blog) I feel like I’ve been on edge and my emotions have been on high alert. For weeks months I haven’t been able to shake this feeling that I’m constantly being pulled in opposing directions. Lately I’ve been blaming it on the blog but I know it’s more than that. Last week I recalled a part of The Happiness Project where the author described a similar feeling. I searched the bookcase and my desk looking for the slim blue book before realizing I donated it, surely assuming I would never need it again. I quickly downloaded the book and swiped through pages until I found the passage I was thinking of.
It was time to expect more of myself. Yet as I thought about happiness, I kept running up against paradoxes. I wanted to change myself but accept myself. I wanted to take myself less seriously— and also more seriously. I wanted to use my time well, but I also wanted to wander, to play, to read at whim. I wanted to think about myself so I could forget myself. I was always on the edge of agitation; I wanted to let go of envy and anxiety about the future, yet keep my energy and ambition.
I decided to make a list of my personal paradoxes that are wearing me down…
I want to be Super Mom and have all aspects of life on point but I want to lay in bed all day and only worry about eating cake.
I want to push myself to have a career I’m proud of but I take comfort in the security of my current position.
I want more hours in the day to tackle the never ending to-do list. I want more hours at night to get more sleep.
I want to dedicate time to my physical health but I don’t want to sacrifice my time with Hannah or my evening routine preparing for the next day.
I want to spend more time with friends and family. I want to spend more time alone.
I want Hannah to be given extra attention. I want her to be treated like any other child.
I want to be better but I’m afraid to leave my cocoon of mediocrity.
No wonder I’m always on edge, half of me wants to strive and half of me wants to settle. I have dreams of achievements, being a game-changing advocate for Hannah, being a better role model for her but I’m too tired, too scared, too complacent to change my strategy.
The last few weeks have been especially stressful with multiple doctor appointments, Hannah starting daycare, managing my back pain, going out of town for a wedding, and being unusually busy at work. All of the internal and external pressures finally made me crack on Wednesday. For the first time in over three years I cried at work because of work (there were plenty of tears shed for personal reasons). It took one obnoxious comment from a coworker (made behind my back, of course) to finally push me over that edge. I tried to hold back but the tears busted through.
As much as I hate crying in public (ugly crier) it felt so good to release those pent up emotions. With my new-found awareness and clear head I feel like I can tackle these paradoxes and try to find a better balance.
This post is essentially what prompted the idea of the blog. Every word existed in my mind for months but it took weeks to actually write them all out. Then it took another week to work up the courage to sit here, ready to give the world a piece of my heart. There were a lot of tears and a lot of chocolate was consumed in the making of this post.
My heart was broken when we received Hannah’s Down syndrome diagnosis. It was as if the labor contractions I had experienced just 30 minutes earlier migrated to my heart with the sole goal of demolishing it. The emotional shock was so overpowering that it made my body ache. I was physically present but my mind was disconnected from reality, like it was all a dream. It’s a sensation I hope to never experience again.
Hannah was kept in the nursery for testing, then transferred to a children’s hospital in the evening. It was about 36 hours before I saw her again, the strangest and most depressing 36 hours of my life. My soul hurt and my heart was empty, crushed. Every positive emotion connected to bringing a child into the world was cancelled out by an equally powerful negative emotion. The strongest of all was fear. I was afraid no one would love Hannah. I was afraid I wouldn’t love Hannah.
I practically ran through the hospital’s parking deck the morning we went to see her. My stomach was sick from a mixture of nerves and adrenaline. I needed to see my baby. I needed to fill that emptiness. I needed her to put my heart back together. One look at her chubby face and she had me. One look and I knew I’d love her unconditionally until the end of time.
My love for Hannah didn’t change the fact that I felt cheated and the grief of losing the daughter I was expecting hit me hard. Even though I now know the grieving period is normal and expected, there are days that I’m ashamed of my weakness and embarrassed by my ignorance.
An innocent Google search to learn about my daughter overwhelmed me with an endless supply of statistics and probabilities that did nothing but encourage more anxiety and uneasiness. Family members writing in Down syndrome forums said the children in their lives were miracles and blessings. I thought these people were insane. How could a child with physical and cognitive delays be a blessing? You were blessed with a life of exclusion, stares from strangers, a child that can’t and won’t be able to do the simplest things? I was sure these people were lying to themselves. Hannah’s wasn’t a special baby – she was a Special baby. She had a defective heart. She was broken.
I blamed everyone for Hannah’s extra chromosome. I told myself we should have waited longer after our miscarriage, that my body clearly hadn’t understood the science of multiplying cells. I blamed the doctors for never noticing any signs on the ultrasounds. I blamed my obstetrician for assuring me that my genetic test results were good enough. I blamed myself for not trusting my gut and insisting on an amniocentesis. I blamed God. It felt like a punishment, a life sentence of hard labor for two people who were already working hard. I didn’t understand why God would give a child with special needs to a couple that was not financially or emotionally strong enough to handle her.
Daydreaming about the future would spiral out of control. That one chromosome plagued every thought and crushed every dream. Hannah would have friends as a toddler, while she was still cute and her delays were shrugged off as being young. After a few years the cuteness would wear off and our friends would stop inviting us over. It would be too hard for them to have us around. Our only friends would be other families in the Down syndrome community. People would stare at us in public, feeling pity not empathy, for our sad lives. Hannah would struggle in school and spend recess and lunch alone for more than a decade of her life. Afternoons would be spent in therapy and doing physical and mental exercise instead of chasing friends in the backyard, squealing in delight. Hannah would live with us her entire life. There would be no retirement. We wouldn’t get to cash out at 65. We wouldn’t have a child to take care of us in our old age. We would not be grandparents. We would only be Mom and Dad.
One day the grieving stopped. When Hannah was about 3 months old a coworker asked me how she was doing. My response was a single word – perfect. It was true. Hannah always was and always will be the most perfect human being in the world. I was the broken one. I had no experience with the world of special needs prior to Hannah and had no concept of what Down syndrome meant for our future and for Hannah’s life. As I educated myself I became disgustingly aware of my ignorance. I didn’t know we joined a community of beautiful and courageous families. I didn’t know there are advocates whose life work is to spread awareness. I didn’t know to stop seeing Down syndrome as a disability.
I still have bad days and struggle to drown out the ‘what ifs’ and ‘how comes’. I see children younger than Hannah practicing a skill that she’s not ready to attempt. Comparison is an ugly game and we will rarely win. The future still scares me. If I’m not careful my imagination will push me over the edge into a sea of hopelessness. I remind myself that Hannah will run around with friends. She will ride a bicycle. She will be included in school. She will go to college. She will do all these things and many more but she will do them when she’s ready. No one will rush my baby and no one, God help them, will limit her.
When I look at Hannah I don’t see Down syndrome. I see a little girl who wakes up every morning with a smile. I see the determination in her eyes to grab a toy just out of reach. I see a scar that reminds me of how much she struggled during her first few months of life. While I’m not at the point where I can say Down syndrome is a blessing, I know that Hannah is. Every day I am thankful for the time I have with her. I am thankful that her heart defect was repairable. I will get to see her grow up, unlike so many families who have lost children. Hannah was given to us to teach us about true love and compassion, to make us strong, and to spread joy (which she already does so well). I would never take Hannah’s extra chromosome away from her. It is the foundation of her life. Without it there would be no Hannah and I can’t imagine my life without her.
Today is a very special Throwback Thursday. Today, Pete and I are celebrating four years of marriage!
When I was in college I never imagined I would be where I am now at 30 years old. I didn’t expect to be married, let alone be a homeowner and mother to the world’s best dog and the most amazing little girl.
This last year tested us physically, financially, mentally, emotionally, and spiritually. There were days that I felt broken and defeated, but through the veil of tears I could always see Pete, arms out, ready to pull me back together. This year made him a stronger man and he helped make me a stronger woman.
I look forward to every new day with him. Days filled with laughter, silly conversations with Hannah, bickering, being pushed out of our comfort zones, and a whole lot of hugs. There is no one better suited to be my partner in this crazy journey.
Part of the toast I made at my sister’s wedding has become my favorite piece of advice to myself…
As the years unfold, continue to look back on today and remember what brought you to this moment. No matter what life throws your way, let the love that has bound you together make you strong and there will be no obstacle you cannot overcome. For better or worse. That was our vow.
This past Friday marked 12 weeks since Hannah’s AV canal repair surgery. It’s amazing how time flies when you’re not looking for signs of heart failure.
The week before the surgery we traveled to Virginia Beach for my sister’s wedding. We had the cardiologist’s approval for the long road trip and the wedding festivities were a welcomed distraction. It was the first time Hannah met my two brothers and most of my extended family. We were there to celebrate the union of two people in love but I was also celebrating the beginning of Hannah’s new life.
The rehearsal dinner was in a private room at a local restaurant. I didn’t know most of the people in the room, only the bridal party and some familiar faces from the bridal shower., but everyone knew of Hannah.
Hannah was a perfect dinner guest. She was quiet and there was an empty corner for her to play on a blanket. She loved to stare at her hands. There was nothing more marvelous than the back of her own hands. I had to interrupt play time to give Hannah her meds. Three times a day we fought with Hannah’s tiny mouth, tricking her into opening it, navigating around her tongue, trying different techniques to get her to swallow the sugary liquid.
I fished through the diaper bag for the two bottles and a syringe. I always started with the easy one, the one that made her smack her lips for more. The second one had an artificial banana flavor that even made me cringe. I wiggled the syringe to the corner of Hannah’s mouth and released a drop or two. Rest and repeat. Rest and repeat. Rest and repeat.
I suddenly became very self-conscious and wondered how many people were watching us. Sitting in a room of normal people with their normal lives I was giving my baby medication to delay heart failure. How did this become my normal? Counting grams of gained weight and milliliters of milk consumed. Listening for labored breathing and checking to make sure she was still breathing. EKGs, echocardiograms, and pulse oximetry. Waiting in exam rooms and waiting for a surgery date. Four long months of normal.
One week after surgery we had a different baby and our normal changed.
Hannah loves to eat and hates to nap. She refuses to snooze the day away when there’s so much playing to do. A few thirty-forty minute power naps are all she needs to feel refreshed and energized. Hannah would spend all day in the activity gym if she could. She rocks and rolls and flips and spins. She whacks and kicks her toys with force and pulls them into her mouth. Anything that goes near her mouth must be tasted. On Saturday while I was changing her diaper, my left hand holding her feet up, she pulled her feet towards her face, guided my forearm to her mouth, and gnawed on it like the world’s cutest zombie baby. When it is time to eat, at prompt three hour intervals, seven ounce bottles are guzzled faster than she used to laboriously drink three ounces. The hearty burps and belches are music to my ears.
Her cries are loud and long-lasting now. Hannah’s first ever baby meltdown only lasted ten minutes because she didn’t have the energy to keep crying. It happened in the early evening and knocked her out until morning. The new Hannah can wail and, of course, the first time she showed us we were hanging out with friends. Forty-five minutes of shushing, bouncing, rocking, rejecting bottles and pacifiers, and sweating (me and her) for no apart reason. Four nights in a row. Poor Gamy was ready to move out. We’re fortunate she doesn’t demonstrate her new skills that often.
Normal is easier now and much more fun. A heck of a lot chubbier too.
On my way to work this morning I realized the English muffin and yogurt I packed for breakfast were not going to cut it. My body was demanding some serious calories after an amateur dinner of a tablespoon of cheese wrapped in a tortilla and dipped in salsa. I was running a little late thanks to an incredibly messy and stinky morning gift from Hannah but decided a bagel was a necessity today. I had 12 minutes to get to work and debated which would be faster – Panera or Dunkin’ Donuts. I chose Panera (the employees usually move a bit slower but it’s less crowded than DD) and zipped into the parking lot, unbuckled, and opened the door before the key was out of the ignition. As I turned and stood, my back seized. I was frozen. After the first couple seconds of panic fizzled I told myself to walk it off. Two baby steps later I aborted my bagel mission.
I drove to work and decided to tough it out for a couple hours. I sit most of the day anyway and sitting seemed fairly comfortable as long as I leaned on my desk to take all the weight off my rear. The few times I had to get up gave me an excuse to finally work on my zombie walk, you know, just in case. Two hours later, when my left calf started to tingle, I surrendered and headed to the doctor.
The nurse ran through the typical questions. What brings you here today? Do you smoke? Do you take a daily vitamin? How much do you think you weigh? Are you still taking the antibiotic prescribed three years ago for an ear infection? What’s your favorite color? On her way out she handed me a robe, instructing me to remove my shirt and skirt and put the robe on with the opening in the back.
She apparently missed the part of our interaction where I had to climb on the exam table like a baby deer learning to walk. I was pretty much stuck in that spot. I assumed I was on some kind of hidden camera show where a nurse finds the patient in the most physical pain and tries to make her cry. You won, lady! Two fat tears sprung out of my eyes and landed on my skirt, the skirt that was not going to be removed.
A few minutes later the PA walked in looking all sorts of tall, dark, and…adorable. He looked like a 19 year old trying on his Halloween costume. He’s going as McDreamy and his buddy is going as McSteamy and it’ll be funny because they’re 19 and best described as “aww so cute.”
I explained the morning’s incident and my history of back pain. He made me do physical activities like lifting my legs, laying down, sitting up, bending (that skirt came in handy), standing, twisting, twerking. It was most certainly pay-back for mentally second guessing his doctor skills. The diagnosis was a mere pulled muscle and he explained the steroid and muscle relaxer he’d be prescribing. I had to cut him off because I forgot to inform him that my chubby, back-breaking baby drinks breast milk and well, it doesn’t take a medical degree to know steroids and muscle relaxers are not appropriate side dishes for infants. At this point Dr. McBabyFace realized I’d suddenly lost my mind and told me my options are to pump & dump for a week or deal with the pain. I shuffled out to the waiting room to wait for my ‘scripts, then shuffled back to my car.
This is when I realized I’d lost my mind. I sat there for five minutes trying to decide if I should go back to work or go home. The cuckoo half of me said “Go back to work! It’s safer there. Think of all the things you’ll want to do at home.” The slightly less cuckoo half of me countered with “Oh my good Lord are you out of your mind he told you to go home and relax and you could lay in bed and maybe take a nap are you seriously considering…” Fast forward to me in a bubble bath.
This was the busiest week we’ve had with Hannah since her surgery. Apparently I lost my mind one day and thought it was smart to schedule two doctor appointments and start daycare all within 3 days.
Monday was Hannah’s fourth BAER hearing test that was actually completed. Even though the results of the first three tests ranged from really bad to pretty good, they were easy to administer because pre-surgery Hannah could sleep like a champ. A test with post-surgery, 6 month old Hannah required planning and a killer bicep workout for momma.
I fed Hannah an hour earlier than usual that morning hoping she’d be borderline hangry when we finally got set up in our room. The audiologist applied the electrodes to Hannah’s forehead and behind her ears and left us to eat and snuggle. Hannah was nearly finished with her bottle and kept drifting off to sleep; however, anytime I’d move the bottle away from her mouth, she’d jolt herself awake and stare at me. She clearly knew something fishy was going on.
I wasn’t having any success rocking her to sleep in the chair so I hoisted her up against my chest for some slow dancing and serenading. This is Hannah’s go-to sleep position but it kills my arms because she turns into dead weight. Once Hannah was asleep it was impossible to move her into a different position without waking her up and/or pulling off the electrodes which meant another 40 minutes of bicep quivering. It was worth the workout because Hannah finally has 100% hearing in both ears!
Tuesday was Hannah Banana’s first day at daycare! I was not at all surprised that I cried while getting her dressed and giving her a pep talk (be nice, make friends, don’t be stingy with the smiles). I went in a little early to meet the teachers and discuss Hannah’s physical abilities and limitations, Birth to Three visits, and her general likes and dislikes. Grandma also stopped by to see the facility and wish her Sweetie Pie a good first day. After a half day on Tuesday and a semi-half day yesterday it seems like Hannah is adjusting very well and she even learned some new noises to make.
Yesterday was a pediatrician appointment to follow up on Hannah Banana’s post-surgery weight gain. I enjoy going to the pediatrician monthly because I get to ask my random questions instead of turning to Google for help. After confirming that Hannah’s height and weight are perfectly on track (82nd percentile for children with Down syndrome/50th for typical children) I asked the doctor about normal vs abnormal spit up, the super cute drool rash Hannah’s been sporting lately, and got approval to introduce cereal/oatmeal. While playing with Hannah’s crazy hair, the pediatrician noticed that the left/back of Hannah’s head is slightly flat, which is no surprise since she favors that side.
After work, Pete and I discussed the last three days while we played with Hannah. At one point we talked about how she’s still “crying it out” for 10 minutes or so most nights and for naps on the weekends. I told him it was more of a fussy cry now, rather than the bloody murder screaming when we first implemented the plan, so it didn’t worry me (or the pediatrician). I should have known I would jinx myself! I gave Hannah her bedtime bottle and gently put her in the crib while she was barely awake. As soon as I turned to leave she woke up crying. The crying turned into screaming and I couldn’t wait the full 10 minutes to check on her. The poor girl was sweating and crying real baby tears. I couldn’t let her cry like that after being such a good girl all week.
I scooped her up and held her tight. She instantly stopped crying, wrapped one arm around my neck and one around my shoulder, and burrowed into me. There are times, like last night, when Hannah wants to snuggle so badly that her body melts into mine. I didn’t realize that I need to cuddle her just as much as she needed to cuddle me. We hugged and rocked and her breathing finally slowed down, her exhales trembling slightly. We sat in the dark, melting in to each other.