Today is an exciting day for our family – Clare is 1 year old! Every first birthday is a joyous occasion, but we are extra thankful to be celebrating this milestone. Our girl is a little under the weather this week but we are managing her symptoms at home with a little extra support and comfort care. We are thankful to be doing that at home as opposed to in the hospital like the times before when she wasn’t well.
I wrote the following letter to Clare as a reflection on her first year. It was the most challenging, rewarding, exhausting, educational, and prayerful year of my life. 366 days ago I could never have imagined this would be our life today. But here we all are, going strong…ClareStrong.
My sweet and determined girl. You’ve helped me learn a lot about myself this past year. Let me tell you a little about what I’ve learned about you:
Your entrance into this world was a quiet one – you had a weak cry and needed a lot of assistance to clear the fluid from your mouth, nose and lungs. Little did we know that was just the beginning. The first days, weeks and months were uncertain as we treated the issues that you presented, all the while unsure as to the underlying problem. In and out of the hospital, some admissions scarier and longer than others, all leading up to your diagnosis four days shy of four months old. The entire time you were so brave! Always courageous and faced each test, procedure, treatment head on. By the time December came, we knew something was really wrong. There were many sleepless and scary nights before your last admission. We knew we needed to keep you safe and help you grow but that came with a cost – it wasn’t an easy decision choosing a tracheostomy and all that it would entail. We knew instead of coming home you’d live at a rehab facility for months until you were stable enough for discharge and only after dad and I had enough training to take care of all your needs. And once home, it was all up to us (along with the help of our amazing nurses).
You are determined. And smart. So so smart. You have learned to hold up one finger when asked how old you are – that took only a few times of showing you (See for yourself: How old is Clare?). You love peek-a-boo and “Wheels on the Bus” (your favorite parts are making the horn go “beep, beep, beep” and making the wipers go “swish, swish, swish”). We love when you wave “hello” and “goodbye” too. My favorite is your latest trick – blowing kisses! You can sign “more” and “all done” which has empowered you to communicate with others and have a say in everyday activities. You love to clap! Yay for Clare! And you clap to cheer on others too. Your eyes light up when you see people that you love and trust. We are delighted when you kick your legs and flap your arms to greet us. You love reading books and cannot wait until it is time to turn the page. You love popping bubbles and even more so, watching your brother and sister pop bubbles. You keep a close eye on Liam and Regan as they run around the house. They adore you as well. For the first few weeks after you came home from Shaker, Liam would comment how the “whole family is here.” Each morning they pull themselves up on your crib to give you a kiss and say “good morning Kware” and say good night before going to bed the same way. You are close to mastering switch toys and are already using a tablet as a way to communicate. GiggleBellies and Little Einsteins are your favorite videos to watch during treatments. You are growing and getting stronger. We are amazed at your growth and development this year. You are almost 20 pounds and 29.5 inches long – 40% percentile for weight and 70% for height! You have five teeth and I think you’re working on your sixth. You recognize friends and family but are still unsure around strangers. You look to me when you are not sure about something. I love that you trust me that much. You’ve progressed. Although you are medically complex and lack muscle strength, you do not let that slow you down! You have great head control, can sit unsupported for a few seconds, roll side to side, reach above your head and bring your feet to your mouth. You love anything that crinkles which makes trach care challenging since you grab at every package we open. There isn’t enough time in the day to work on all the things you need to get bigger and stronger. We are doing our very best to make sure you are getting all the help you need. You keep us on our toes but as we’ve gotten to know you better, we are able to figure out if you need assistance or suctioning based on the looks you give and the numbers on your monitors.
Because of you, we have made many new friends…wonderful people who care so deeply about you and your well-being. Your nurses who love you like you were their own. I am thankful for the blessings each of them bring to our family. All five of them called, sent a text, or were here to celebrate with you. Beth brought you balloons and Cathy brought a gift and book. Your friends at Cleveland Clinic Children’s – M 33, M 43 and M 53 nurses, doctors, PCNAs, and respiratory, occupational, physical, and speech therapists. They saw you (and mommy and daddy) through some very uncertain days. They came to your rescue more than once. Your friends at Shaker for helping us transition home – they were with us for all the laughs, tears, achievements and setbacks. They helped you grow, develop, and thrive. The five months you spent at Shaker provided us the tools and support as we learned how to care for you when you came home. Our friends at Shaker also made sure everything was ready for you when you came home – nurses hired to cover all shifts, your supplies and equipment, future doctor appointments…they prepared us with everything we needed to start the next part of your journey.
You have so many fans. People we’ve never met who have been praying for you, encouraging you, supporting you. You are loved by so many. Your grandparents, aunts and uncles, great aunts and uncles, cousins, friends, neighbors, many communities (Gesu, Ss. Robert and William, VASJ, Our Lady of the Lake, and A Special Wish to name a few)…the out-pour of support has been incredible and I am truly humbled by everyone who has reach out to us this year. All because of you. Clare you have inspired others around you, me especially, and I’m so proud to be your mom.
Each night as I tuck you into bed, I tell you that I am proud of you, that I am grateful for you, that I love you, and that I will do whatever I can to keep you safe and happy. I tell you to behave and then pray that you stay safe so that I can see that beautiful smile the next morning. I sing the refrain from, “My Lovely Rose of Clare” then you turn towards your aquarium, reach to turn on your fishies and gather your lovey and start sucking on your finger. It’s the same thing, every night. I find it comforting we have a routine and I think you do too. One of our favorite books is “On the Night You Were Born.” I read it to you in the hospital, at Shaker, and now at home:
On the night you were born,
the moon smiled with such wonder
that the starts peeked in to see you
and the night wind whispered,
“Life will never be the same.”
Because there had never been anyone like you…
ever in the world.
Heaven blew every trumpet
And played every horn
On the wonderful, marvelous night you were born.
– On the Night You Were Born by Nancy Tillman
This year has been a challenge but I am so so grateful for you and the lessons you have taught me. I can’t tell you how many times someone has said to me, “You have your hands full.” I read something that answered that statement with, “You should see my heart.” And it’s true. My heart is so full. Happy birthday my sweet and courageous girl. May you have many, many more filled with health, happiness, love, and laughter.
I love you more than you will ever know,