Faith through failure

I'm a never give up type of person and I am trying to teach my children to have perseverance. That's not to say that I don't let them fail – I believe there is a lot to be learned from failing. And in some respects failing and perseverance go hand in hand.

So after six years of conversations and trying new things and retrying old things and working with doctors, a nutritionist and a feeding therapist and Brett still not gaining enough weight it felt like a crushing defeat in October when his doctor said it's time for a feeding tube and I had nothing left to battle with - just tears.

Brett's cerebral palsy impacts his muscles. For him the tongue and jaw are part of that. So eating and drinking that come so naturally to most have been a lot of work for Brett. He has done great and come so far. But the spastic part of his cerebral palsy also means that his body moves involuntarily - all day long. So all the hard work expended to eat burns the little calories he consumes and then his body just works and works burning even more.

I have talked to my friend who has worked with children with CP and feeding tubes, I have talked with a mom and nurse whose child had a feeding tube. I have listened as therapists have assured me that time and again parents always wish they had done it sooner.

It is a strange place to be - caught between logically knowing that you have done everything you could and you are making the right decision and having it compete so strongly with the emotional response that screams NO! Try harder. Do more.

It is that side of me that remembers praying and begging and coaxing a 4 lb baby to take the smallest amounts of milk so he could come home from the hospital. We celebrated 13 long days later when the overnight nurse said he had done it and he did it for me again that day. It's the side of me that sat with special tools stimulating different parts of his mouth to build strength. It's the side of me that has sat face to face with this boy for six years slowly feeding him and praising when he drank one more ounce or ate just one more spoonful. The side that wants to high five everyone when Grandma or one of his aunties announces he ate beyond his usual amounts or actually ate something new. The side that delighted when we finally found a new food he could process and liked that was good for him and might add meat to his bones – like peanut butter on crackers. Together with Tate and our family – Brett's pit crew – so many of us have given time, heart and soul to the pursuit of packing on the pounds.

The feeding tube has been brought up many times. My argument when doctors would say "failure to thrive" was that he was thriving – he is thriving. Despite the work and the struggles – He. Is. Thriving.

But he is getting so tall and the rest of him isn't keeping up. He is in the 50th percentile for height on the CP chart and barely makes it on the chart for weight. I believe there is a difference between failure to thrive and failure to grow. But, that’s just semantics. Either way it feels like failure.

We had a family weekend away this summer and Peyton was enjoying taking pictures with my phone. I was so startled when weeks later a picture of Brett lying on the bed with his shirt off popped up on my computer screen. He looked skeletal. It scared me.

So here I am trapped between taking a faithful step forward toward what feels equal parts right and wrong – relief mixed with defeat.

After all the wrestling with logic and emotion – no matter how much research I do and how many prayers I send up – I know it is time. I know that sometimes failure and defeat can lead to good, productive, life changing places.

My prayer is that all the words of encouragement I have received will one day prompt a post that does say - 'I wish we had done it sooner.'

I pray that Brett will grow stronger and have the ability to do or try more. I pray that Brett getting regular doses of his medications through the tube will result in him feeling better more consistently. I pray that it will result in the removal of mealtime struggles and stresses replaced with time to play and more joy.

I pray and trust that six years of effort only to end up in the same place will results in something better than what I can imagine

I pray for the day I will say what looked like failure ended up as victory.

What I want you to know about CP

Today, Oct. 1, is World Cerebral Palsy Day. This year I decided to write about some things about cerebral palsy that I wish more people knew, understood or thought about. It's been quite an education for us and I try to pass along what I know to others so they can be more understanding.

Cerebral Palsy is like snowflakes - no two are the same.
I still have to remind myself of this one from time to time. It's so easy to get caught up comparing Brett to others with the same diagnosis.  Some cases are very mild and barely noticeable - a hitch in their walk or a slight curling of a hand. It can impact just one side of the body, just the upper half, just the lower portion or all of the body. It also has varying degrees of severity. Brett's effects all four limbs. He also has spasticity - meaning his muscles spasm involuntarily. So his type of CP is considered spastic quad and his is severe. (see infographic below)

How is it treated?
There is no cure for CP ... yet. CP is essentially a brain injury. What can be done at this point is controlling the symptoms through medications, therapies and surgeries. Through repetition of tasks -improving muscle memory and motor planning - Brett has progressed in a lot of areas. Medications help relieve some of the spasticity taking away some of the pain and controlling movement.

How do I interact with someone with CP?
Just like you would anyone else. Don't be afraid and above all - assume intelligence. Though CP is a brain injury, for many it only impacts the way their body moves and operates. Their thoughts and intelligence are fully intact. Yes, there can be people with CP who also have intellectual disabilities or delays. But assume they know as much (if not more) than others their age until you learn otherwise.

If you don't know - ask
Kids are great about this. They will blurt out all kinds of questions because they are curious. I wish we as adults were more like that. I never mind a respectful question. Even if it's clumsy I still appreciate it if asked from a place of kindness. What's your diagnosis? Are you able to ...? Can I help you with...? What is that like? If you have a question ask it here in the comments. I'll do my best to answer.

They don't need pity
I get it. Your heart aches to see another person struggle or in pain. But there is a difference between compassion and sympathy. Brett's life is hard, but it's not sad. It can be frustrating for him, but so can life for anyone. People have asked me if it makes me sad. It doesn't. Yes, sometimes I grieve. I grieve when Brett is surrounded by kids and they are running and he is left behind. I grieve when his disability doesn't allow him to do something he would love - like go on a roller coaster - and I can't work out a way to even the playing field for him. But on a regular basis there is no sorrow. Brett is such a funny, happy boy. He is good at so many things and is surrounded by people who fiercely love and advocate for him. Don't assume someone's life is not good because they have CP or another disability.

Ask first before helping
This is my biggest struggle as a parent. I help all of my boys too much. Tying shoes when they can themselves. Opening snacks when they are perfectly capable. There is a lot Brett needs help with but don't assume he wants you to do it for him. I see it most when he is struggling to use his communication device. I want to jump in and help and make his life easier. But if I ask or his therapist says "can I help?" Nine times out of 10 his answer is 'no.' If he could say it I swear he would shout "I can do it myself!" even when he can't he would rather try and continue to fail than have someone else do it. There is a difference between helping someone and doing it for them. Ask first and respect their answer.

Here is an info graphic from last year I found helpful:

Brett's Motor type is mixed, quadriplegia, GMFCS level V progressing toward level IV.

I have something to say

Several weeks ago as we were leaving Grandma & Granddad's house Granddad gave Brett a kiss on the forehead and said "I love you, buddy."

And Brett responded "I love you too." 

I was holding him and almost dropped him. Tears sprang to my eyes and I looked at Granddad – he had heard it too! A miracle moment.

Part of Brett's Cerebral Palsy diagnosis is that he is "non-verbal." Mostly he lacks the trunk strength and coordination to do a lot of the breathing involved with talking. Lately he is making a lot of sounds. Trying to communicate with his words, but we often can't understand him.

He has some words he uses regularly. He will answer "ya" responding to some questions. He can say "Momma" and "Daddy" – and I assure you there are few sweeter sounds. He often calls "out" or "all done" from his bed in the morning (sometimes around 4 or 5 a.m.) and he often says "I like it" with varying degrees of clarity. Sometimes we will hear a word or phrase, like "I love you too" as clear as day and then not hear it again for months or ever.

Brett can't use his voice to tell you he's hungry and when he's crying he isn't able to use his voice to tell us things like "my tummy hurts" or "my leg braces are bothering me" or "this shirt is scratchy." There are times when he desperately wants me to know something and I can't figure it out and he is frustrated to tears and I've been in tears while my heart aches to know what he wants to tell me and the world.

So we aren't ok with Brett not having a voice.

I often tell people "just because he can't speak does not mean he doesn't have anything to say." Unfortunately, people correlate his lack of language for a lack of intelligence. In Brett's case he completely comprehends what you say and what's going on around him. He knows his numbers and letters, letter sounds and sight words just like other kindergarten students. But communicating all of that is a challenge – for Brett and for those he wants to communicate with.

Since Brett was little we have introduced a variety of methods for Brett to "speak" or participate in conversation. I am grateful for my friend Jana whose background as a speech pathologist opened my eyes early to the options and assured me he wasn't too young to give them a try.

Brett has a Big Mac switch and some smaller block switches. They are essentially buttons you can use to record single messages and he can activate the switch to speak. He has used them to tell people happy birthday, say trick or treat on Halloween, to bring home messages about what he did at school and to help read a line from a book. He has a switch that allows up to three messages and is most often used for him to participate in our bedtime routine to say Amen after a prayer and then goodnight to his brothers. He uses some basic body language to communicate. A thumbs up for yes and arms/hands crossed for no.

Since Brett was three he has been working with several AAC devices. He uses a PODD book, which uses a series of Boardmaker pictures to give him choices of things to say. He also uses a communication device - a computer that allows him choices of things to say. 

Progress is slow. 

Because of his physical issues Brett doesn't yet have the accuracy to quickly touch a screen to say what he wants. So he has two switches or buttons. One at his elbow and one by his hand. He uses his elbow and a little speaker by his head to listen to the choices of what he wants to say and when he gets to the right one he presses another switch with his hand to make the device say it. Sometimes, especially when he is excited, his body gets away from him and his elbow will hit the switch going right past what he wanted to say. It can sometimes take up to five minutes for him to communicate a single thought. It can be both mentally and physically exhausting for him and a test of patience for the person he is communicating with. But he has made a lot of progress and does a great job with it when he is motivated to say something. We are waiting to hear whether insurance will approve a new more dynamic device for him to use as his old one is outdated and doesn't offer enough options for him.

Brett had another breakthrough a few weeks ago at assistive tech therapy when he used his device and a PODD to ask a question about something that was going on in the hallway. It was the first time he initiated a question and we were so excited!

I tell you all of this for several reasons: 1. To offer a better glimpse into Brett and how he communicates. 2. To encourage others to investigate the many communication options. 

May is Better Speech & Hearing month. If you know someone with a young child who is concerned about their speech or hearing please encourage them to visit identifythesigns.org – there is so much today that is treatable and so many solutions available.

It also doesn't have to be a child. These communication options can be used at any age and are being used by adults with ALS, dementia and a variety of diagnosis. 

My career is in communications and I can't imagine not having the opportunity to say what is on your mind. I look forward to the day when Brett's abilities and the technology come together to the point where he can say anything he wants to anyone who will listen.

Until then we will celebrate all the special moments. I asked each of the boys to record a Mother's Day message to Grammy who lives out of state. On Brett's turn I set him on the couch and told him when I started the video he needed to say "Happy Mother's Day" to Grammy. I was expecting him to use his Big Mack switch. Listen closely to the beginning of the video - amazing!

Casting, braces and Botox

Brett has the cutest feet. 

I am not a foot person. When I have had the opportunity to get a pedicure I’ve always whispered a prayer of thanks that they are willing to do that job. I’m cringing thinking about it as I write.

In several respects Brett would make many dancers jealous. His toes are perpetually pointed with a beautiful arch. My dancer days are a distant memory, but we did exercises and all manner of hard work to get what he has. He also has scissoring legs. Not great for every day use, but if you lift him off his feet when he is excited he rivals every ballet dancer I’ve ever seen doing an entrechat where the legs criss cross rapidly in the air.

But, alas, he is not trying out for Swan Lake at the moment so the toe pointing and leg scissoring are a challenge. Most of it comes from the high tone in his legs.

So, shortly after the start of school Brett underwent serial casting. The idea was that he would be casted in a foot flexed position. Every two weeks new casts would be done and the flexion would increase. I waited until summer was over and he was in the swing of things at school. But just as he got his casts on we had a heat wave of 100+ temps. I’m sure he was sweating in them, but he fussed the first day/night a bit and then never again complained. 

To our surprise he was only casted once. The orthopedist said in the one casting he had gained as much flexion as we could expect. I could tell the difference immediately. This has helped with his walking and leg positioning. It also helped him with his new AFO (ankle, foot orthotics) or leg braces that he wears daily. He had trouble with his last pair because his strong arch was pulling his foot out of them and making them uncomfortable for him to wear. He cannot work on walking flat footed without the braces. So after he came out of the casts he was able to get new braces as well.

Shortly after that he was on to the next thing – Botox injections. I know! I remember hearing about it from another parent when Brett was small and being somewhat horrified. But I asked around and did research and after quite a bit of hesitation on my part decided he should give it a try. They gave him two ultrasound guided injections in the abductor muscles in both legs. The idea is to loosen up the muscles so he isn’t too tight. Part of Brett’s spastic quad CP means that his muscles are as tight as drums. Medications help some, but as he grows the spasticity becomes more intense. To offer some examples sometimes he is so tight when he is on his back on the floor I can’t bend his knee or hip flexor to bring his leg toward his chest or do bicycle motions. Some days I cannot get him to bend at the waist to seat him in his wheelchair or his car seat. He is like an unbendable plank. He has always had this issue, but when he was tiny it was easier to maneuver him into the positions. Now that he is almost 4 feet tall and strong as an ox it is very challenging and sometimes dangerous to hold and position him at the same time.

I was really skeptical. But it worked. 

He was able to relax enough to be able to do things he never could before. At Halloween he sat on a stair unaided and showed off his pumpkin. Besides being adorable he was able to sit unaided because his body was relaxed. You might also notice his bare feet are flat on the floor!

He has always been able to sit criss cross apple sauce on the floor for seconds at a time. After the Botox I positioned him in criss cross during Sunday school and there he sat for almost 15 minutes. Righting his body when needing to and only tipping over when he lost his balance. He was better able to pull his legs forward in assisted walking. A bonus was that he was using his hands so much better. Because he wasn’t working so hard on his legs he could focus on other areas. He was holding his spoon, opening drawers and really perfected isolating his pointer finger for use on the iPad. His thumbs up indicating “yes” became more pronounced. He was able to work on a new sign for “no” crossing his hands.

And then it was gone. I could tell you to the day when it had fully worn off just before Christmas. I was fighting his body to get him in his car seat and was thinking – why is this so hard? And then I realized.

He is able to tell me that his muscles hurt more now that the Botox has worn off. It’s like in the cartoons when someone is granted a wish or turned into something, but then the magic wears off and they are back to themselves. The magic has worn off.

But the good news outweighs the bad news. 

The good news is that he has retained some of the skills – the thumbs up and pointer finger are so good and I assure you the “no” is here to stay. Though he can’t maintain it as long, his independent sitting in criss cross applesauce is better.

Though he can get the injections every three months the only doctor I trust to do it is on medical leave so it will be awhile before he gets it again.

The bad news is that eventually it will stop working. For most, as if there is an immunity built up, he will someday no longer respond to the treatment. I don’t know when that will be so for now we are hanging on to the good stuff.

For those of you who don’t have children with physical disabilities I know this all seems strange. Sometimes having a child with special needs can make me feel like we are living part of our lives in an alternate universe and – in a way – we are. Casting and Botox on a five year old would have seemed strange and admittedly may have seemed  a little bit like torture if I didn’t live in this world.

But from where we live I am adding both serial casting and Botox to my list of Bizarre Things I am Thankful For.

World Cerebral Palsy Day: Those who go before us

As a parent of a child with Cerebral Palsy it can sometimes feel daunting – the letters, meetings, research, appointments, arrangements and conversations that need to take place so Brett has the same opportunities available to him as his brothers and peers. From big things like integrating into a classroom and making sure there is playground equipment he can use to little things like keeping up on the latest studies and research on CP – the list never shortens. We take time to celebrate every little victory, but then use that energy to move on to the next challenge.

When I feel exhausted or defeated, as I sometimes do, I stop and remember that I’m picking up where others left off. It’s my turn to carry the torch for a while because there will be another child right behind Brett and I want their lives to be better and easier.

It still shocks me to think that it was within my lifetime that people with Cerebral Palsy were institutionalized and marginalized (and sometimes still are). I think of what it must have taken to change that. When I was in school the children with special needs were seen in passing in the halls, but had their own classrooms. Someone looked up and out and said ‘I need a mountain moved’ – and I am so grateful – they have moved – even if just an inch.

On this day of spreading CP awareness I want to introduce you to some of the mountain movers I know:

I am privileged to know a young woman named Hannah who we met where Brett gets his therapy at Easter Seals. Much like him she drives a power wheelchair and uses a communication device. She is a college graduate with an enviable job and a strong faith. She lives independently in an apartment with help from an aide. She went parasailing on a vacation recently. She has been a friend to me and my children and a source of motivation to us all. Probably without knowing it she offers me a vision of what life can be like for Brett. She constantly has me rearranging my view, seeing the world as a better place for Brett each time.

I know a woman, Amy, who works where Brett gets his therapy. She was the first adult with CP that I got to know after Brett’s diagnosis. She probably doesn’t know this, but she made it all seem so less scary. We are there on different days so we don’t see her too often, but when we do Brett shrieks with delight. If he hears her voice down the hall he will fuss until he sees her. He even cried once recently when I said he had to say good-bye to her because it was time for therapy. She offers her time to camps and her alma maters to talk about CP and spread awareness. She says things to Brett like “I know buddy some of those things are a little harder for us aren’t they?” People are drawn to her – she is beautiful inside and out. But Brett is drawn to her on a whole other level – she gets him. I appreciate the positive messages and awareness she is spreading about CP.

I met another mom, Susie, earlier this year. Her daughter has cerebral palsy too and many medical issues – she has been integrated in a regular classroom since kindergarten and is now taking college courses. The road was difficult and exhausting, but they carved out a path where I can start with Brett that’s a little less bumpy and she has come along side us on the journey and is walking with us and gives me courage and wisdom.

I know a couple, Katrina and Joel, with triplets plus one. Four beautiful children and three of them have cerebral palsy. They are a joy to spend time with, a blessing in our lives. They are sending their children to conductive education. A rehabilitation through learning program that pushes children to reach their potential for independence. It is not close to their home but they have rearranged their lives to offer their children an alternative opportunity. Both the parents and their children are a shining example to me of Philippians 4:13 being lived out daily.

“We can do all things through Christ who gives me strength.”

I met a mom, Kris, whose son with cerebral palsy is just a little older than Brett. They live just across town from us and have three boys – including twins – so she gets it. She always seems to be a few steps ahead of me in advocacy, research and equipment. In addition to being a great friend she is a great resource and a woman of exceptional strength and courage. Last month she took her son to St. Louis for a surgery that I know was scary, but holds promise for her son to have a life with less pain and more possibility. I am watching closely as his amazing story continues to unfold. It is opening my eyes to the possibility of a different future for Brett. And, if nothing else, it fills me with immense hope.

These are just some of the stories. These are just the ones that have intersected our lives lately. But I know that every possibility that is out there for Brett did not come without a parent, teacher, therapist or other loved one behind them fighting the good fight.

To all of them on World Cerebral Palsy Day I offer my humble and sincere thanks for going before us and coming alongside us in the world and making it a better place than it once was. I am grateful for the examples of courage and strength giving me the motivation so I too can go charging forward and, God willing, make life a little easier for someone else.

An IEP, a prayer and a mountain moved

                                            Brett's last day of preschool

When Brett was 3 he was evaluated by the school district for his preschool placement. After more than an hour in a room full of strangers from therapists to psychologists all making requests of him I didn’t feel like they saw Brett’s true abilities. Before we even left the room they suggested Brett be placed in a multi-needs classroom (a separate class for children with multiple issues and a variety of diagnosis). Mama bear took over - I wasn’t happy. Brett will be integrated in a regular preschool class I told them. They recommended we visit the multi-needs classroom before making a decision.
I told Tate we were in for a fight.

But then we visited the classroom and despite all my preconceived ideas and principles we were so impressed and Tate and I both left there convinced it was the right place for Brett and we still believe that two years later.

But last month a few week’s before Brett’s scheduled IEP meeting (an Individual Education Plan that creates goals and details of needs) a strange thing happened. I told Tate I felt God kept putting the idea of integration in my path. We had planned to just move along happy with multi-needs, but everywhere I turned I was reading about integration and meeting new people who were telling me their experiences, it just kept coming. I told Tate I just can’t ignore it so I’m going to explore it. I met with a mom whose daughter, with Cerebral Palsy similar to Brett’s, had been integrated from kindergarten all through high school. She was amazing. She had a whole box of resources and coached me on some things to say and not to say in an IEP. More than anything, though, she listened and encouraged. I felt so grateful for all those who have gone before us blazing a path not traveled before. I left there feeling empowered. I talked to Tate and e-mailed the school district/special education program about our desires to integrate Brett in kindergarten – and I prayed. I felt like I was following a lead that wasn’t my own, which put me way outside my comfort zone.

For those who haven’t been through it, IEP meetings are stressful. You come to the table with the child’s team. The idea is the parents and child are part of that team. But it’s just you and about six or seven people from the school district and it can be intimidating. Since Brett was 2 and I started researching schools, programs etc. I have read and heard countless stories of bad IEP meetings with major disagreements, advocates and lawyers. Those seem to be the norm. So Tate and I did our homework, we proposed goals of our own and made numerous pros and cons lists for a variety of integration scenarios. We were realistic about the limitations beyond our control like distance between schools and multiple bus trips. I prayed someone else might offer a solution we couldn’t see.

We braced ourselves and went in prepared for battle.

But when we got in the room I was reminded that we are a team. Except for one new district official, everyone at the table was someone who has been helping Brett for two years. We traded stories and ideas and the tension melted. At the end of the goal setting we had gotten everything we wanted and more. We realized what an advocate Brett has in his speech therapist.

When it came to talking about transitioning to kindergarten the program director asked what we wanted. I told her our pie in the sky version – Brett safe and comfortable in his multi-needs program part of the day and then integrated into our neighborhood school with his brothers the second part of the day. Dipping our toes in the water. But the two schools are on opposite sides of town. We were concerned about the additional disruption, especially to his lunch, which is a challenge for all involved. But they said 'if that is what you want, we can do it.' We threw out a few more scenarios and then asked everyone around the table to give their honest opinions or new ideas. We landed on what we knew was best for Brett –  staying at his current school for both multi-needs and integration. They suggested we take time and discuss it privately, come back with any more questions and then let them know when we had decided. We talked and prayed and slept on it for a few days. We felt at peace with the choice and signed off on it.

I said a prayer of thanks that we have options, things had gone so smoothly and it was over. But, I know Jesus knew my heart was disappointed that Brett still wouldn’t be in school with his brothers.

Fast forward about four weeks. I received a call from the special education program administrator.

“You’re not going to believe it,” she said and I held my breath thinking, 'what now?'

“They are moving the kindergarten multi-needs classroom to your neighborhood school. Brett will be able to attend that class and integrate at his neighborhood school with his brothers.”

I choked up, I couldn’t respond. I was floored – I still am. I immediately called Tate and we shared our shock and celebration.

I was still crying when I hung up the phone and couldn’t stop saying prayers of thanks. I immediately thought of Matthew 17:20 and am reminded, as I have been so many times in the five years since the boys were born, that even when my faith feels small - pray God-sized prayers. Nothing is impossible through Him.

Matthew 17:20 (NIV)
He replied, "Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you."

Kicking milestones to the curb

When the boys were little I had one of those books about milestones and what to expect from birth to age 3. As a new mom I kept checking it and working on things and sighing with relief when things matched up. But at a certain point when more and more of those milestones weren't being met by all our boys it became a source of discouragement and disappointment. I remember sitting on the floor trying not to cry, praying and realizing - he will have his own milestones. The book went in the garbage and Brett has had his own milestones. Milestones you won't find in any book. I will forever remember the therapy session when he was 2 and matched all the baby animals to the correct mommy animals. It was the first real sign for me that he was really understanding and learning right along with his brothers. I remember when he started grabbing at my arm to get my attention, last year he mastered the thumbs up to answer 'yes' to questions. They are different, but they are amazing and they fuel my soul and give us hope. I think in some ways we are fortunate that we have the opportunity to really hone in on things most people take for granted and celebrate them with such joy.
I was fortunate enough to catch this on video and I'm continually grateful for people like his physical therapist Miss Elizabeth who believes in Brett and constantly cheers us on. So, after a physical therapy session packed with hard work Brett blew me away - again.
Watch, wait for it and celebrate with us - I think you'll get a kick out of it. David Beckham is retiring just in time.