Lynda and her husband live in Tampa, Florida with their almost three-year-old daughter, Emma. Lynda is an RN, however she has spent the last almost three years caring for their daughter at home. Her husband travels Monday thru Friday most weeks. She had a normal pregnancy and genetic testing done during pregnancy came back normal. Shortly after birth, Emma showed some disturbing symptoms. Three hours after they arrived home from giving birth, Emma went into respiratory arrest and Lynda administered CPR on the floor of her bedroom. Upon arrival back to the hospital she was found to have a blood sugar of 10. She was placed on a sugar drip to sustain her life for about 3 weeks. During that time she suffered a stroke and seizures. She was then transferred to CHOP and had an 85% pancredectomy and LADDs procedure. She was found to have hyperinsulinism, Moasic Beckwith Weidemann Syndrome with moasic trisomy 12. Emma is almost 3-years-old and wears a size 5! As a result of her stroke, she has Cortical Visual Impairment, developmental delays due to hyperkenesis, Sensory Integration Disorder and Autism Spectrum Disorder secondary to stroke. Lynda blogs about their journey as a family at www.beautifullymessylife.com. Today she’s sharing what a regular day looks like for her family.
It’s early, really early. I look at my phone. It’s 2:45 a.m. Emma is having another restless night of sleep. It’s something that always leaves me wondering what’s causing her persistent restlessness and questioning if there’s anything that we can do to improve her quality of rest. Between night terrors, thrashing arms and kicking legs, it’s difficult to get any more than 3 hours of sleep on some nights. It looks like it’s going to be one of those nights for the both of us. It’s possible that she has to use the bathroom, so I take her potty. As I hear the tinkle into the water, I count my blessings. She’s done so well with potty training. I get her back to bed, tuck her in and lay down next to her. I hope that the trip to the potty has done the trick, but it hasn’t. Her tossing and turning, kicking and arm thrashing end around 3:55 when she turns over and says, “Mommy, huggie.” I hug her and she drifts away peacefully to a land, which I hope, is happy and fun.
I hear the alarm ring and know that it’s 5:45 a.m. It’s time to rise and shine. Emma had a rough night so I let her sleep in for a few minutes. I walk out; past the clothes I have laid out for the day into the kitchen grateful for automatic coffeemakers as I pour my first cup of the morning. I have 1 ½ hours before we need to leave for occupational therapy, so I shuffle my way toward the bathroom. Passing the bed, the sight of Emma sleeping stops me in my tracks. For a moment, I consider waking her up and getting her started on breakfast. Instead, I smile not only because I find the sight of her sleeping so sweet, but also because I get to dress in peace this morning.
It is 6:15 and time for Emma to wake up. Although she’s resistant to getting out of bed, she cooperates in getting dressed, brushing her teeth and placing her glasses on along with her eye patch. Emma knows her routine, so she heads to the kitchen, climbs onto her chair and sits down. We do her therapeutic brushing and set the alarm to sound every 90 minutes during the day. The alarm will prompt me to remember brush therapy throughout the day. This morning’s breakfast is yogurt, a banana and Cheerios with a cup of milk. She has such a difficult time with meals because of her eyesight and requires more assistance than the average three-year-old. I set her up, point out her food and encourage her to feed herself. Between feeding the dog and packing the car, I find that Emma has stopped eating. I turn her plate around so that she notices the remainder of banana and Cheerios and she begins to eat again. I frequently find myself having to turn her plate and remind her that there is still food to consume. I continue to alternate between packing the car and feeding her, but we’re cutting it close on time. I notice that she has once again stopped eating. I sit and feed her until she says “all done.”
We hop into the car at 7:15 a.m., finally on our way to therapy. Car rides use to be horrible with Emma, but she has come a long way and I have finally come to enjoy my time in the car with her. Honestly, this is mostly because it’s the only time of the day that her hyperkinesis can’t get the best of her. Hyperkinesis and vision field cuts aren’t exactly a good combination, but rather a recipe for disaster when it comes to safety. For now, she is in her car seat and I am relaxed and cool as a clam for the next hour and ten minutes.
We arrive to our 8:30 a.m. OT appointment with five minutes to spare. Those extra five minutes are spent searching for her eyeglasses and eye patch she tossed during the ride. I get her out of the car and we begin making our way toward the entrance of the building. Because she has trouble with depth perception and often experiences double vision, she falls down frequently. Even after visual cuing, she trips over the curb. Although I anticipated the tripping, she surprises me when she takes a big fall. She gets herself up and I see that she has scraped her leg. As I bend down to wipe the blood off with a Kleenex, I note the numerous bruises up and down her legs. They’ve marked her as if to remind me that her vision impairment has gotten the best of her. This thought causes my heart sink into my stomach. I realize that the only thing I can offer her is support. But this isn’t comforting when all I want to do is take her struggles away. I smile and remind her that I love her, hold her chin and gently kiss her forehead. “Love you too, mommy,” she responds.
We are working on helping Emma follow sequence and instructions in therapy today. We start with brush therapy and move on to an activity to reinforce focus, taking turns and using her vision effectively. After the game, it’s time to transition to a floor activity, but Emma is having a tough time with her impulsivity and hyperkinesis and can’t get herself organized. She simply wants to run around. It becomes brutally painful for me to watch. In search of distraction, I take my phone out to review emails. I remember as I reach for my phone that I caught video of a possible seizure yesterday. Once Emma’s therapist has her settled, I discuss what I observed and show her the video. She quiets her voice in concern and urges me to start keeping a diary and instructs me to contact Emma’s neurologist immediately. Adding insult to injury, she discusses the fact that she feels Emma is in need of an IEP if she is going to start school soon. I can feel my skull splitting in two at the thought of special education. This isn’t what I had planned. This isn’t what I wanted for my little girl. This isn’t going to happen. I have to figure out what I can do to send her to catholic school like I had planned.
We’ve run into overtime at therapy. Emma and I get into the car and just sit. I just need a moment to breathe. I consider the fact that Emma and I need a break from this messy situation. I start the car and drive off at 10:00 a.m. Normalcy comes to our family in the form of traditions and routine, but this morning Emma and I are taking a detour. We typically run an errand or two after therapy and enjoy Chick-fil-a for lunch. Today, I have a lump in my throat. Between this seizure issue and going home to a list of calls to be made regarding IEP’s and special education, I am an emotional wreck. Some shop therapy is in order, so I’m heading over to the mall… the Disney Store to be specific. That store makes my baby so happy and I’ll do anything to see that smile only the Disney Store can put on Emma’s face.
We eventually walk out of the Disney Store meltdown free and head over to Chick-fil-a. As we turn the corner into the food court, the sound of construction pierces through the atmosphere. Emma pulls the glasses off her face and digs the palms of her hands into the side of her head to cover hear ears. She lets out a high-pitched cry and everyone stops to stare at my almost three-year-old who’s having a hard time with the loud sounds. Not understanding why my child’s cry is so appalling to some, I ignore the looks and kneel down to give her the usual pep. “Emma, you can do this. Just sing. Sing a song to yourself. I know it’s loud, but we are going to beat this.” She knows what I’m saying and responds, “Ok, mommy.” I put her glasses back on and we continue through the ocean of jackhammers and shouting. We make it past ordering food, but not without Emma throwing herself onto the dirty floor of the food court and cleaning Chick-fil-a’s counters with her tongue. Knowing Emma has had enough, we go outside to eat and then head home.
Once home, I focus on getting Emma into a soothing activity. I get her organized at the table with colors, a coloring book and some background music. I sit across from her at my computer to catch up on emails and news. Emma is excited from the day’s activities and worked up, so she is loud and tossing colors across the table at me. She’s happy and having a good time until her activity suddenly stops. The silence catches my attention, so I look up to notice that she having a staring spell again. I call her name and she gives no response. I gently stroke her arm and she doesn’t respond to the touch. I quickly go to the kitchen, turn off the music and grab my phone. I get another episode of possible seizure activity on video. I’m overwhelmed with anxiety. I’ve got to get her to sleep so I can send the video to her doctors asap.
My husband is normally out of town on business Monday thru Friday, but this time he is away for 12 consecutive days. Needless to say, nap time is a precious time in our house. As tired as I feel, it’s the only time I am able to make phone calls and get a little work done. Its 1:15 and I think she’s ready anyway, so I lay her down on me and she quickly falls into sleep. I slip out of the room and sit down to call the doctors about her possible seizure activity and call several catholic school registrars about her special needs.
Emma wakes up at 3:00 p.m. We eat a snack, let the dog out and take a walk. She is edgy, fidgety and talkative for the remainder of the afternoon. I set her up in her room with toys and TV and we play until it’s time to make dinner. If I don’t include her in my activities during this time of the day, it simply becomes a competition for my attention. So I let her help with making dinner and doing dishes. Besides, she enjoys helping me these days. We sit down to eat at 6:00 p.m. After dinner, I notice she is bumping into doorways and falling frequently. Of course, as luck would have it, this is also the time of day when she is the most active. As the evening progresses, Emma becomes clumsier. I put her for a bath to bring her activity level down. Between her singing and my blowing bubbles, it’s the nicest part of our day, filled with giggles and smiles. We do our nightly routine and get her to bed with a bottle. She has her ipad time then we read her favorite book, Zombelina. 9:00 p.m. comes around and she is laying on me to fall asleep. She has a difficult time settling herself down at times, but tonight is a good night. She’s sleeping and it’s only 9:15 p.m. I grateful, I think it’s my turn for a bath.