Monkey See, Monkey Do.

My family has always been very important to me, and I always knew I wanted a house full of children. So, when my husband and I got married, I was extremely blessed to inherit my then eight-year-old step-son, Nicholas, who quickly taught me what it was like to be a mother, and how important it was to pray for patience and strength. I remember when Marvin and I told Nicholas that we were having a baby, and how much he wanted us to have a boy, so he could share his toys and play video games with him.

Unfortunately for Nick, that baby would be his sister, Olivia, who loves dolls, playing dress up, and reading Rainbow Magic books more than any video game. Olivia has grown up to be a loving, caring, sweet, smart, and beautiful little seven year old.

Despite the range in their ages – seventeen, seven, and four – and their totally different personalities – serious, princess, and clown – all three of our children get along famously, and I hope and pray that they always will.

Over the last few days, I have noticed Evan trying to be just like his big sister, Olivia. From wanting to wake up when she does, to eating exactly the same thing she eats for dinner, to coloring the same kind of pictures she colors, what’s good for Olivia is good for Evan.

The truth is, if Evan turns out to be as loving, caring, sweet, smart, and beautiful on the inside and outside as his sister is, he should be in pretty good shape. So today’s special thing about Evan is that he is loved by, and loves, his big sister with all his heart. I know that she will always protect, love, set a good example, and watch out for him, because she knows how special he really is

OLIVIA'S STREAK

Amazing Grace

A piece of art drawn by Evan

There is no doubt that my husband and I embrace our faith and religion and try to pass them along to our children. We understand and appreciate that we have received many blessings in our lives. And, we are thankful for many things, including our families, our friends, our jobs, our health, the roof over our heads, the food on our table, and the ability to enjoy dinner together as a family most nights.

In fact, dinner is one of the only times our family gathers together each day, so it is a special, sacred, and sometimes silly time. Before my husband and I got married, I would eat dinner in front of the TV, and I rarely thought about praying. When we got married, Nicholas led our dinnertime prayers, and our ritual started. Quickly and seriously, he would recite “Bless us oh Lord, and these Thy gifts which we are about to receive through Thy bounty through Christ our Lord. Amen.”

I remember when Olivia came home one day from Bright Ideas and announced that she wanted to say grace. So, our ritual evolved. In her little voice, she whispered, “God is great. God is good. Let us thank Him for our food. Amen.” Short, sweet, and to the point. Then, one day after she started kindergarten, we waited for her to pray. Suddenly, in a wonderful melodic tone, she sang, “Oh, the Lord is good to me, and so I thank the Lord for giving me the sun and the rain and the apple seeds. Oh, the Lord is good to me. We love our bread, we love our butter, but most of all, we love each other.” Still very sweet, maybe a little long, but the sentiment was wonderful. So we adopted it, and our ritual changed again.

Naturally, as soon as Evan started saying grace at Bright Ideas, he wanted to take over the reins, but Olivia wasn’t ready to fully give them up. So, Evan and Olivia have come up with a compromise with a little twist. (And, God help us if we are super hungry…) They both start out screaming our short and sweet favorite “God is great. God is good…” Then, they break into “Oh the Lord is good to me” but as they get to the end, Evan puts his own creative tweak on the prayer, and he makes sure he shouts, “We love our bread. We love our butter, but most of all, we love our mother.”

As Evan gets older, it is going to be so important for him to have structure, rituals, and family time. It’s also going to be important for him to have faith and continue to feel blessed. So, today’s special thing about Evan is his faith and his blessings. May they be abundant, strong, and long-lasting!

OLIVIA'S STREAK

A Major Part of Our Village

We’ve all heard that it takes a village to raise a child. When you are raising a child with special needs, that expression becomes a complete reality.

My husband and I both work full-time and have very fulfilling careers, so after we got married and started a family, we were very fortunate that my mother and his mother agreed to watch Olivia and Evan at our house until each of them turned a year old. That was actually a double blessing for us where Evan was concerned, because both grandmas spent enough waking hours with him that they noticed he wasn’t using his right hand and insisted that we have him checked by his pediatrician.

About a month after his first birthday, Evan started daycare at Bright Ideas – the daycare that his sister and his cousins, Madison and Johanna, had attended. I have to admit that I was apprehensive about sending him to daycare at first. After all, he was my baby and a stroke survivor, and he couldn’t stand up by himself, he was barely crawling, he couldn’t hold a sippy cup yet. Naturally, he survived, and then he thrived. He graduated from the baby room to the toddler room and then to the next toddler room, and with each new room and each progression, he received more and more love and support from the amazing staff and teachers at Bright Ideas. I fondly remember the first time he got in trouble. I immediately called the director, Miss Anna Marie, to talk to her about what Evan had done, and she was thrilled, because he was acting just like she would expect a little boy to act. I also remember when Evan took his first steps, the staff and teachers cheered and cried right along with us.

Last year, Evan found two of his biggest advocates – Ms. Jackie and Ms. Leslie. These amazing ladies taught Evan his numbers, letters, shapes, and colors. They celebrated with him as he learned to use the potty, and they practiced tough love as he learned his boundaries. Last May, they went above and beyond my expectations by organizing several events to honor Evan during Pediatric Stroke Awareness Month, and even though he has moved on to the Pre-K class, they are honoring him again this year.

In Evan’s life, there is a pretty big village. There are his doctors and therapists and his family and friends. Then, there are the people who take care of him nine hours a day five days a week. So, today’s special thing about Evan is that he is a part of the Bright Ideas village. And, a special thank you to everyone at Bright Ideas for being a part of Team Evan.

OLIVIA'S STREAK

Those Three Little Words

Evan:     “I love you, Mom.”

Me:        “I love you too, Evan”

Evan:     “I love you, Mom.”

Me:        “I. Looovvvve. Youuuuu.”

Evan:     “Mom, you forgot to say something.”

Me:        “I love you TOO.”

This is a conversation Evan and I have at least four times a day, and I know that he and his Dad have the same conversation several times on the way to and from school as well. And, while it does get maybe just a little bit annoying by the fourth go round, it is really important for him and totally sweet.

I think about how much love he has seen in his four short years of life. Love from his parents and brother and sister, love from his Lilly-doggie, love from his grandparents, love from relatives near and far, love from our friends and his friends, love from his doctors, love from his therapists, love from his teachers, and love from total strangers who may not even know him but have heard his story. He is indeed surrounded by love, and it is exactly what he needs. He needs it to know that people truly care about him, his progress, and his accomplishments. He needs it to give him strength and courage to succeed. And, he needs it most of all, because he is a four-year-old who is sweet, sensitive, and innocent in a world that is not.

I am very proud of my little boy for telling us how much he loves us. So, today’s special thing about Evan is that his life is full of love!

OLIVIA'S STREAK

There’s Nothing Better Than a Great Snuggle When You Need it Most…

One of the things that I remember most about Evan from when he was an infant was how much he loved to be held and snuggled. I vividly recall, during my 10 weeks of maternity leave, that each day, Evan would fall sound asleep on my shoulder, and I would try with all of my might to lay him down in his bassinet so I could take a shower, do some dishes, or tackle a load of laundry. But, as soon as I released him from my arms, he would suddenly wake up and start crying. Then, as soon as I picked him up and held him on my shoulder, he would fall sound asleep again, so I would give in and hold him until he woke up from his nap. That boy just wanted to snuggle…

Through the years, he has continued to love snuggle time – with me, with my husband, with his brother, with his sister, with our dog, and with his stuffed animals.

Well, Evan and I both had tough days today. I was not feeling well, and the day seemed to drag on. I honestly couldn’t wait to get home and relax on the couch with a comfy pillow and warm blanket. Evan got in trouble at school, and as a result, we took his two favorite trains, Annie and Clarabel, away for the night. So, when I arrived home, longing to lay down on the couch, my little boy was in the middle of a total and complete meltdown.

I immediately knew what Evan and I both needed. I quickly changed my clothes, turned on the Spurs game, and sat down on the couch to snuggle my little boy. Suddenly his mood changed, and I felt better, too. With his head on my shoulder and my arms around him – just like when he was an infant –  I held him until we were both comfortable and calm. Ahhh, all was right in our worlds! So, today’s great thing about Evan is that he is a master snuggler.



OLIVIA'S STREAK

Wednesday is Therapy Day

Even before Evan was diagnosed with having suffered a stroke, he started physical therapy. We may not have known what was causing him to keep his right hand in a fist, but fortunately, our pediatrician knew Evan needed some help. So, in January of 2008, Evan started physical therapy. Then, he started occupational therapy. And, finally he started speech therapy. Perhaps, one of the most consistent things in Evan’s life (besides his family, of course) has been therapy. In his short four years of life, he has endured hours and hours and hours of therapy – so many hours that I can’t even begin to count. And, he has done so without complaining, questioning why, or feeling sorry for himself. It’s just become the thing that he does on Wednesday afternoons.

Don’t get me wrong, during his sessions there might be complaining, arguments, and even tears. But, there is always participation, accomplishment, and progress. In fact, when I think about how far he has come – from not being able to sit up, crawl, or speak clearly to being able to run, jump, use his right hand, and ramble on and on and on – I am truly amazed. And, while I am thankful for the team of therapists who have helped my son reach milestones that I wasn’t sure he would ever reach, I’m also thankful that my son works so hard even when he is probably tired, sore, and frustrated. So, today’s great thing about Evan is that he is a willing and enthusiastic participant in PT, OT, and ST!

OLIVIA'S STREAK

Introducing the Inspirational Evan (and my Streak for Pediatric Stroke

February 21, 2008. It’s the day that changed our lives forever. I can still remember the phone call I received from the doctor’s office – the nurse telling me that the pediatric neurologist had reviewed the results of our son Evan’s MRI and wanted to speak to me and my husband.  I still tear up when I think about the doctor telling us that Evan, who had just turned seven months old, had suffered a stroke. He threw out words like left middle cerebral peduncle, perinatal infarction, cerebral palsy, hemiplegia. All I could think about was my beautiful, sweet little boy and the journey that we were about to embark on as a family.

The next several months were filled with therapy sessions, doctor’s visits, lots of explaining Evan’s diagnosis to friends and family, some denial, and lots of wallowing in self-pity. Then, during one of our doctor’s visits, one of Evan’s neurologists asked us something that changed my outlook on our situation. He said, “I’m sure you’ve talked a lot about what is wrong with Evan, but tell me what is great about him.” At that moment, I realized that the doctor was had a point, we did focus on what was wrong with Evan and not on what was great about him. Evan was hilarious. He was tolerant. He was a great snuggler and much much more.

Fast forward four years. Evan is almost five, and he is doing incredibly well. And, he is still hilarious, tolerant, and a great snuggler. He is also outgoing, persistent, really smart, hardworking, the class clown, and much much more.

 To honor Evan, who continues to amaze us every day, my streak for pediatric stroke month is to write one great thing about Evan each day. So, today – May 1, 2012 – Evan is inspirational! Clearly, he has been through a lot – MRI and CAT scans; hours and hours of PT, OT, and ST; countless fittings for AFOs and braces; doctor’s appointments galore; and two sessions (five weeks) of constraint therapy – but he still wakes up every day ready, willing, and able to conquer the world. 

OLIVIA'S STREAK

Olivia's streak continues with a picture a day. Today's picture features her brother, Evan, and Evie, who also suffered a stroke. Evan and Evie will meet for the first time this summer at the CHASA retreat. Her Mom and I have already arranged their marriage!