Before having children I had no idea how much work they could be. As a working professional, I thought I would have the "Mommy" thing wired... Oh boy how wrong could I have been! When Noah entered our lives my husband and I found ourselves wiped out after the first few days at home. I remember sitting on the couch, the house a mess, and looking at Brien (we both managed to get the flu) and thinking what have we done? We are not capable of this! But as Noah grew he taught us a few things about parenting and we've got our badges and bruises to show it. He continues to teach us about his baby sister, Cecily. The other day he lifted up his shirt and said, "See, I'm not a baby anymore because I don't have a tube anymore!" We've explained to him before about Cecily's tube but he just thinks she is going to grow out of it like he did... only he never had a tube! We love it when he talks about Cecily crawling, walking and eating. He does not see a disability. He sees a future full of abilities. And when Cecily is ready to eat, we know Noah will be there cheering her on with all the yummy stuff. We are looking forward to the day that Cecily wants to eat, too. We know it will come... but for now, we will just be grateful that the tube is working and that she is growing every day.
This past year has brought so many wonderful people into our lives. From nurses, to therapists, to doctors and the families of all the wonderful families we have met from Cecily's Closet. We are so very grateful for the support we have received over this past year. We wanted to express our continued thanks to PaintGreen and Inside Emily's Head. Both companies have partnered with Cecily's Closet in an amazing way. We will continue to work with each of them as we reach out to help other families. Words can't expres our gratitude! If you need a painter or a muralist, please contact them! Not only are they excellent at what they do - but they are extraordinary people.
Next week Cecily begins the gauntlet of medical appointments. October is a busy month with about 20 different appointments to check out Cecily from her head to her toes! We are excited to show her team of doctors and nurses how well she is doing. And regardless of what the Doctor's think... we know our angel is thriving, just like her compassionate, supportive brother! Onwards and upwards!
This past weekend we completed out fifth room makeover. We had so much fun meeting an exceptional little girl, Emmy, and her equally exceptional family. She is adorable in every way. She is pure sunshine and love. According to her Mom, she is a reminder to all to live in the moment and to slow down. Please take the time to read her story
and learn more how her family inspires this little angle to keep on fighting. Cerebral Palsy will not slow her down. She is walking, communicating in her own way and showing the world that it is the little things that make life worth living.
Emmy's family is warm, giving and generous. They are fierce advocates for their daughter, sister and you can feel the love in their home. We are grateful to PaintGreen and Inside Emily's Head for helping us transform Emmy's room into a special place for her to play and sleep.
Check out Emmy's new room!
Words just get in the way of this precious photo. We think this picture says it all! I'm adorable and I'm thriving. Brien's Grandmother had this dress made when Cecily was born. At 18 months - it fits like a glove and she looked like an angel wearing it. We love this photo because it is one of the first pictures that actually captures the light in her eyes that we see shine brighter with each passing day. Is it possible that one child can bring so much joy to the lives of so many? She is a gift to us and our family. She radiates love and curiosity for the world. She bounces with glee at the sight of family. She loves dogs and soft blankets. She likes to have her belly kissed and she enjoys pulling hair - a little more than we would like! There are no words to describe the pleasure she gives us. We hang on every sound she utters and every move she makes. This week we think she may have said "apple" and she sat in a grocery cart for the first time. Perhaps even better, she started to laugh again. Like Noah, she has a belly laugh - just a little softer and a little lighter. It is magic.
Her trunk is getting stronger, her legs are bearing a little more weight and she sat for three minutes unassisted! These small victories, that we took for granted with Noah, are reasons to smile, celebrate and let the dust collet and the laundry pile up! We have better things to do... like sit around and wait for the next big slide, step, sound, sigh and smile. Onwards and upwards!
I wanted to share this wonderful blog, Special Needs Mom
, celebrating the simple, every day. It chronicles the Mom of two children with special needs. I felt like I was reading an email from my sister. If you have time, read it and pass it along. We can all learn something from this wonderful tribute to family, life and living for today. I found myself glued to the computer screen. I am so glad I stumbled upon this gem.
My dear friend Paris shared this story with me when Cecily was just a few months old. It was a challenging time in our life and we were battling a host of new feelings - from excitement, to fear, to confusion to anxiety. At this time the Doctors had no reason to believe Cecily was not the typical child - but we knew otherwise. Thanks to Paris and the support of family, friends and Dr. Wood - we're in a wonderful place in our life. I want to thank a stranger who contacted me on Facebook to share this amazing story again - complete with author and copyright. I think this is an insightful way of helping to understand that alternate paths in life are just as amazing!
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
We're not sure where we are most days - but we we know we are happy, we are loved, we are lucky and we are blessed. We are grateful. Cecily has definitely taken us on a very special journey and we are finally enjoying the ride. Onwards and upwards!
From the mouth of babes... We're driving along and I'm trying to get a sense of how Noah is feeling about the past week and the chaos of our lives. He chatters on about school, Superman and his birthday (which is not for months...) and then he says he wants Cecily to be a baby forever. I am not sure if I hear him correctly so I ask him to repeat himself. He begins to explain that Cecily is getting too big and her wants her to be a baby. He continues on about how he likes babies and she is just getting big! I smile to myself and wonder if this has anything to do with the fact that Cecily, now increasingly mobile, can find her way over to his lego buildings and destroy them with one simple grab.
Fast forward a few days... We're driving home from Rady's Childrens Hospital, having devoted most of the day to Cecily's three appointments, picking up meds and more medical supplies. It was not quite the Friday Fun Day that we strive for but Noah was not complaining. Sure, he had a few outbursts here and there but all-in-all not so bad for a three year-old tagging along. One would think at this point that he has had it with babies and Cecily's hectic schedule. We come to a stop-sign and I wait for a young Dad adn his two babies to cross the street in their double stroller. Noah shouts from his car seat, "Hey Mama, that guy has two babies. He has to give us one. We need another baby!" I look in the rearview mirror and see a mini-Brien (Noah's Dad) staring back at me. He is serious. He is not kidding. Despite everything he has endured this year he wants to share his parents with another baby.
Today we said goodbye to Cecily's Physical Therapist, Karla. I was very sad. Karla has worked with us for more than a year and I'm sure pretty sure the therapy helped all of us, not just precious Cecily. She involved Noah in the sessions and she was so good with Cecily. She is a wonderful person, a patient therapist and an advocate for children with special needs. We wish her well on her return home to Wisconsin to take care of her parents. This is just another sign of what an amazing person she is. She will be missed!
And finally, after our recent hospital stay Cecily is once against thriving on all fronts. She is greeting us in the morning with smiles and her vomit has decreased significantly. She still has a very bad cold and a nose that won't stop running - but that won't keep her from improving her new tricks. She will scoot, army crawl, roll, and slide her way to Noah and his toys. She perks up when she hears his voice and she is quite proud of her new accomplishments. She got to meet her Auntie Madeleine and Uncle Peter for the first time - and she impressed them with her alert demeanor and fun-loving smiles.
And speaking of genetics... we received the results of Cecily's SMS test and she does not have it! We're less interested in a label and more interested in finding some clues to help the doctor's alleviate her pain and chronic vomiting. We're hoping that her upcoming surgeries will alleviate her troubles and enable her to embark on the next phase of her development. For now, we're enjoying Cecily, Noah, and the joys of watching the bond between them grow. And as Noah reminded us - we're trying to relish the time she is a baby because it is all going by too quickly! Onwards and upwards!
After another stay at hotel de Radys... Cecily is hopefully getting discharged today. A flu bug, respiratory infection and continual feeding challenges is not going to slow our little ladybug down. I am amazed at how she fights through the pain. I hate to watch her get poked, prodded and pinned down but I keep telling myself this is all to help her. (somtimes it is hard to know when to say stop!)
We wish we had more answers but unfortunately I think this hospital stay just left us with more questions. Her tube has been dislodged slightly but evidently that is "ok" according to the doctors. She tolerated her feeds during this stay with minimal vomit... and the blood and discharge we saw at home stopped without medical intervention. Could a flu bug really cause all this chaos? I pray the answer is yes and that we're on the road to recovery. Time will tell.
We were lucky to see our favorite nurse Miss Katie! As always, she provided wonderful care and it is so nice to see a familiar face in such a stressful environment. We will focus on the smiles Cecily is doling out and the babble that just won't stop. In fact, I found myself so sleep deprived during this stay that I was wishing she would stop talking just so we could all get some sleep! (Now that I am not crazed I find this quite humorous given how many nights I lay awake praying and willing her to make a single sound). I was also very happy to hear her cry for Mama when she was upset or in pain. I really feel she knows me and that she is communicating! Nurse Katie asked Cecily to crawl and she got on all fours and look at me as if to say - see Moma! I was so proud. I think she even tried to say "night night"... or something very close. When we woke up today I was being lazy and talking to her from my chair/bed. She kept waving at me and it filled me with energy to see her so happy and so active.
Perhaps the hardest thing of this week was being away from Noah and Daddy. While I left twice to run home and give him hugs - Noah missed his Mommy and his sister. He said he didn't want to be healthy and that he wanted to go to the hospital. This breaks my heart and I just hope that we can work harder to make him feel loved, supported and special. This is the hardest challenge of having a child with special needs. All children are special. All children have needs. Balancing the load and ensuring everyone gets what they need is the most difficult thing for us as parents. We hope to get home early enough for a family trip for frozen yogurt and a lazy movie-filled evening. Ok... little one is awaking and it is time for lots of cuddles and kisses. There could never be too many... Onwards and upwards!