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!

Evan's Newest Adventure

After my 31 Days for Evan adventure in May, Evan started an adventure of his own this morning. For the next two weeks, he will be going through the CIMT (Constraint Induced Movement Therapy) program at the University of Alabama. This is his second time in the program, so we are hoping for some really great results. In simple terms, CIMT is a very specialized type of therapy for people who have suffered a stroke or brain injury that teaches the brain to rewire itself. During the therapy, the patient's stonger arm is restrained using a cast, and the weaker arm is trained to do certain activites.

Day one of therapy started with testing to see what Evan can do with his right hand. Although he has been through the program before, and I know what to expect, it is so difficult to watch him try to use his "Righty" for activities most people do effortlessly every day - picking up objects, eating, and getting dressed. Truth be told, since his first session of CIMT in July of 2010, we haven't worked with him or made him use his right hand as much as we should have. So, while watching him complete the testing was difficult, I was also encouraged about how much he could do.

Once the testing was over, it was time to make the casts that will serve an important purpose for the next two weeks. Children going through the CIMT program get two casts - one to wear everyday and one to wear while bathing. Evan chose a red cast (for Lightning McQueen) and a green cast, which we nicknamed "Grinch."

After the casts were made, it was "interview" time for Marvin and me. Each day during the program, Evan's Occupational Therapists goes through a series of questions about how often Evan uses his right hand and how well he uses it. Today we did the benchmark interview, so we'll be able to track his improvements and progress. Then, Evan had one more test that measured his range of motion. Again, I was surprised at how well  and how far he could move his right hand and arm. During the final minutes of today's session, Evan's arm was strapped into his red cast, and with that we officially began CIMT.

I always say that Evan is my hero, and he was truly heroic today. He was quiet and sat still while he was being casted. (It doesn't hurt that he was watching Mickey Mouse Clubhouse.) He had fun eating lunch at a BBQ restaurant in Birmingham, and he endured shopping for a new coat when he really wanted to be napping. He was such a trooper for most of the day, with the exception of about 20 minutes of crying and begging us to take off his cast. But, I think he is beginning to like his red, Lightning McQueen cast. It matches his brand-new pajamas!

DAYS 30 AND 31 - A LATE UPDATE

For those of  you who were wondering, I successfully completed days 30 and 31, but I haven't had a chance to update the blog.

I have learned alot on this 31 day journey - about myself and about what Evan goes through on a daily basis. I know he works really hard, but hard work is important and totally worth it.

I would like to thank my inspiration, Evan, for being my hero and helping me get up and moving every day. I would like to thank my fellow-streaker, Olivia, for her commitment to her brother. Finally, I would like to thank my husband, Marvin, for scanning Olivia's pictures each day, for encouraging me through my 31 day streak, and for being proud of me.

OLIVIA'S STREAK

Olivia's drawing for Day 30 features some  heads, with wigs on, letting people know that kids have strokes too. Love the one with the purple hair!

Olivia's picture for Day 31 is her Kinder teacher, Mrs. Hindman, being a fashion model. Olivia is holding her hand because Mrs. Hindman is nervous. Some of her classmates are behind  her!