Holy writer’s block, Batman! Over the last two weeks I’ve tried to force myself and inspire myself to write but to no avail. The only thing I could ever think of was how much I miss Hannah lately when I’m not with her. For example, on Sunday I went shopping for decorations for her birthday party and almost started crying in the middle of Target. I did manage to write one thing last week but it was a pity party about how I sometimes hate being a working mom, don’t want to be a stay-at-home mom, and would like someone to pay me to snuggle with Hannah and take her on field trips. Not an inspiring tale.
Anyway, Hannah has been as adorable and perfect as ever lately. She had her 9 month check-up last week and the pediatrician finally recommended we see an ENT for the chronic congestion. After all the sick visits we’ve had when that poor girl could barely breathe…
According to the ENT, Hannah’s nasal passages are very small and not allowing for easy drainage. She didn’t want to do a scope because she didn’t think she’d be able to see anything with all the congestion and didn’t think it was fair to do to Hannah after having surgery a few months ago. There’s also some fluid in her ears that could be a concern in a few months if it doesn’t drain (because it could cause hearing/speech issues). The Dr agreed with the pediatrician that there’s no reason to give Hannah antibiotics that won’t do anything for a cold.
The Dr’s recommendation is to give Hannah saline drops multiple times a day, have a follow up appointment and hearing test in a few months, and talk to the pediatrician about having Hannah’s immunity checked. Unfortunately there’s not much else we can do except take Hannah out of daycare and put her in a bubble.
The best part of the appointment was that we had 10 minutes to spare so I brought Hannah into work real quick. Her last visit was in October when she was starting to hold herself up while sitting. This time I was able to plop her on my desk so she could see all of my coworkers. This girl is such a ham sometimes!
My baby shower was around this time last year and the little “Piglet” in my belly was busy bopping around, kicking organs. Now, our 9 month old (!!) has been just as active the last few weeks.
She watches everything: One night Pete and I were in the kitchen chatting while Hannah was hanging out in her high chair. She watched us talk, moving her head back and forth to look at whoever was speaking. She notices any movement around her, watches shadows, and loves to look around at the grocery store.
She babbles: The babbling started at the end of the week and hit a high this weekend. It’s a mix of baba, mama, dada, and rara. It’s so damn cute! Hannah thinks it’s funny when we repeat it back to her but is significantly less amused when I show her the video of her talking.
She claps: This is a work in progress but she did it a handful of times last week so it counts. We’ve been teaching Hannah to clap since she was a wee one knowing it would catch on at some point. Just like with the babbling, my heart explodes every time she does it.
She fake cries: My sweet little love has learned to be manipulative! Most mornings Hannah stays awake after her 5am bottle and we play in her room until I need to get ready for work. I’ll pop my head in often to check on her but she rarely even notices me. When she does see me and I turn to leave, it’s instant face scrunching, whining, and fake crying until she sees me return. The other day at Grandma & Grandpa’s house, Hannah woke up from a nap and was content to roll around in her crib and look at her toys. As soon as she saw Grandma watching in the doorway, Hannah turned on the (fake) waterworks.
A few extras…
She’s very close to sitting all by herself
She’s either (finally) signing “mommy” or having a really hard time getting her thumb in her mouth. My vote is for the former.
She wants to touch everything, except her own bottle. God forbid I try to get her to hold that.
She’s enjoying baby food more each day. We tried yogurt yesterday but Hannah seemed suspicious of the texture and temperature.
Tuesday afternoon the daycare called to let me know that Hannah’s cold was getting worse. She was fussy in the morning, wouldn’t tolerate lying flat, was having trouble with her bottles, and belly breathing. The director said it wasn’t an emergency, they just wanted to let me know. I called the pediatrician’s nurse line and left a message asking if Hannah needed to be seen. Like me, the nurse was concerned by the belly breathing and made us an appointment for 4:15.
I spent the next 2 hours doubting myself. Had I let the cold go too long without medical intervention? Did I miss a sign of something more serious? Was I wrong to shrug it off as a typical daycare kid’s cold? I know I only met her 6 ½ months ago but I think I know Hanah pretty well and she seemed OK to me. I was preparing myself to spend the night in the hospital with her connected to IVs and oxygen. Then Grandma texted – Hannah was fine. Seriously, have you ever seen a kid so miserable in your life?
We kept the appointment to make sure there weren’t any issues. Lungs and ears clear. Oxygen levels at 100%. Can’t get much better than that! I asked a few questions about how to ease the cold symptoms and what would warrant an impromptu visit next time. She assured me that when post-surgery Hannah gets a cold it’s just like any other kid’s cold…except that Hannah’s nasal passages are smaller so she will sound worse, be sicker longer, and has a higher risk for ear infections than the typical kid. And that’s where I struggle. In certain aspects of her life, Hannah will be typical with an asterisk.
Yesterday afternoon we had Hannah’s late 6 month check up. Her weight is up to 6 lbs 14 oz and her length is somewhere between 26 and 27 inches (their measurements are not very accurate). I gave Banana a bottle while I asked the doctor questions about baby food, Hannah sleeping on her belly, and the flat spot on her head. Hannah fell asleep in my lap and managed to stay asleep for part of her exam. Homegirl must have been tired if she was able to ignore a cold stethoscope.
After the exam we talked about the questionnaire I completed in the waiting room. At the 4 month appointment, most of the questions were answered with ‘sometimes’ and ‘no’. This time around most of the answers were ‘yes’. Hannah has developed quite a few new skills in the last two months and I’ve even noticed a big change in her over the last two weeks. She’s so much more observant and wants to touch everything. I sat in the backseat with her coming home from the Buddy Walk and watched her look out the window, get surprised by the changing shadows and light on the backseat, and reach out for anything I dangled in her sight.
Once we got home we had about 45 minutes before our Birth to Three appointment so Hannah finished her bottle and took another nap. Maureen and I completed the Hawaii Early Learning Profile, which is pretty simple when evaluating a 7 month old. Hannah woke up fussy and in no mood to socialize or exercise. Instead of making her work, Maureen taught me some facial massages to do before feeding to help stimulate her muscles and I asked for tips on teaching her sign language. When the visit ended Hannah took a long bath, had a small bottle, and it was a very easy bedtime.
Today could possibly be a rough day for the little one and the daycare teachers. She’s still a little stuffy and might be cranky from the vaccines she received yesterday. Fingers crossed for a happy day!
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.
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.
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.