One of the consistent characteristics of our son's developmental condition has been the inconsistency of it. A real oxymoron, huh? He follows large bursts of growth and skill development with quiet plateaus of "normalcy". About the time we settle into complacency and start to enjoy the progress we have made, it all starts to slide away and he enters what we refer to as a developmental lag.
We have experienced a rather lengthy plateau over the last year or so. So much so, that many of his support services have been reduced to a monitoring status or reduced in frequency and intensity. We have instead started focusing on transition services and the possibility of an independent and self-supported adult future. His special education team is just finishing up the re-evaluation report of the IEP that will take him into high school. Our family has moved into more of a support mode and less of a supervision and support mode.
This year has been a year of significant transition and change. Through it all, our son has stepped up, been fairly responsible, and managed good grades. We've been beyond proud of the progress he has made.
Two weeks ago, we started noticing an increase in his stuttering, his drooling, and his chewing clothing. Those behaviors had almost completely disappeared over the last year. He's identified that he has "squirrel brain". In other words, he's having trouble organizing the very busy, very active brain that wants to distract him. This week, we received a message from school that he was behind in a couple assignments. For the first time since school started, he forgot things he needed for homework and I had to run out to the school to pick them up. With great communication from his team at school, we got him caught up on his work and helped him re-organize himself. His stuttering and blocking has increased so significantly that people who only see him on a weekly basis have been absolutely shocked by the serious change in his speech in such a short period of time. One word answers are almost more than he can manage in the evenings when he is tired. The facial ticks and other stuttering associated behaviors, like hiding his mouth and fingers in his mouth to hide it as he stutters, have all returned. Those behaviors had completely disappeared over the last year. The rapid return of these dormant behaviors is shocking. Stunning even.
A significant developmental lag has begun. Maybe the worst we've seen in awhile.
So, we do what we do. We contacted his education team and updated them on what is happening. All of his support service individuals are newer members to his team. They haven't ridden one of these waves with us before. They only know our son that is happy-go-lucky; disorganized but hard working; forgetful but sweet. They don't know how deep these regressions can go or the behaviors that he has learned to hide and overcome. So we warned them of what could be coming. We prepare them so they know what to look for.
We reach out to our family and friends in our inner circle. We let them know what we are experiencing. We remind them of what works to support our boy as he struggles against a body that doesn't work with a brain that is trying to catch up to an eight inch growth spurt. We remind them what doesn't work and what will only cause anxiety and delay growth out of this latest lag.
Then we try to find the balance between reminding our boy about what tools he has and what skills he has learned to help him cope while not nagging, not hovering, not taking away his new found independence. We support while trying to avoid dependency. We remind him to "sli-i-i-de" his speech when he jams up. We let him talk with eye contact and without interruption so he doesn't feel pressured which only increases the likelihood that he will block up. We don't finish words and sentences for him. We let him work it out. We acknowledge the struggle but normalize it by keeping it matter of fact. "That was a tough one. Good job sliding through it bud. Remember to breathe. We will wait for you to finish. No rush." We keep life as normal and as consistent as we can. When he needs 500 hugs and tells us a 1,000 times that he loves us, we roll with it and reciprocate because he needs the reassurance right now. We make sure he is eating good nutritious foods and getting lots of rest. Then we wait for things to run their course.
These developmental lags used to send me into an internal panic. I think I feared he wouldn't pull out of them or that he would regress and lose skills. After fourteen years of riding this wave, it still gives me a sick stomach deep down inside. But now I know we have the skills to work him through what he's up against. We have a great relationship with his school and his education team. We have good family and friend supports. My husband and I have a solid relationship and know how to navigate this together now. Our son has built some solid skills to help him work through these lags. He has also made some friendships with kids and adults who will support him for who he is and know his heart.
Unfortunately, based on the amount he is eating, I don't think we are at the end of this crazy growth spurt that seems to have set off this latest developmental lag. At only thirteen years-old, he is already six foot tall with size 14 feet. Hopefully, he will reach his final size and his brain chemistry can finally catch up with all that growth. In the meantime, we have his back and we will support him wherever this goes and however long it takes.
Saturday, October 12, 2019
Saturday, May 25, 2019
Resolution
Anyone that has been following this blog for any length of time knows that for thirteen years, our family has been looking for answers. Our son has had a laundry list of symptoms and characteristics that were loosely grouped together under the diagnoses of Attention Deficit Disorder and Neurological Impairment. The result of not being able to name why our son was different has left long term impressions on every member of this family. We have been treating symptoms rather than a condition.
After thirteen years of searching, the technology has finally caught up with us and we have resolution. We have answers!
Because our primary neurologist has moved to research and mapping the genome in search of undiagnosed disorders, he is seeing very few patients any more. Last fall, we were assigned a new Neurology Physicians Assistant. This winter, while meeting with us, she asked us if we would consider repeating our son's genetic testing that was previously completed when he was a year old. Her argument was that genetic testing has come so far in the last decade. She listed the different characteristics that he exhibits and stated that she strongly felt that he had a syndrome of some sort. If we were willing, she would like to see if research had caught up with us. After discussing it as a family, we agreed that it couldn't hurt to try.
So, after four months of waiting, the results have come in and we have answers. And the answers are absolutely, stunningly clear. His diagnosis fits him like the proverbial glove. Our son has a gene mutation known as a CHD3- Related Disorder, or Snijders Blok-Campeau Syndrome. Individuals with this syndrome typically have developmental delays, expressive language differences of unique type (apraxia and dysarthria), macrocephaly (large head size), low muscle tone, joint laxity, and scoliosis. Our son has every single characteristic of this syndrome, including many of the lesser known, less common characteristics.
Every cell in the human body has two CHD3 genes. These genes are extremely important to cell function because they are involved in chromatin function within the cells. It only takes a mutation to one CHD3 gene in one cell to cause major developmental issues in developing fetus. Our son's particular mutation replaced an "A" with a "G". The result was a previously unreported mutation of the CHD3 gene. In other words, he is unique, an original. But we already knew that.
So....
What does knowing mean? Why is it so important to us to be able to put a name to the condition? Why does it matter?
Knowing changed everything. And nothing. The moment the geneticist shared the results with us changed our entire world. And nothing at all. I know that doesn't make sense to most of you but to us that paradox is our absolute truth.
For thirteen years, we asked ourselves if we caused our son's differences. For thirteen years, we questioned every single decision we made because we were operating without an operator's manual. Our decisions were guesses. The news was beautiful and devastating. It brought us peace as it tore at our hearts. My husband and I have shed a lot of happy tears over the last few days.
For a very long time, I felt very alone on this journey. It's the primary reason I started blogging. I never wanted another parent out there living without answers to feel as if he or she were alone. Because if someone else is walking your journey, it's not just you. Someone else out there "gets it". As I have shared in the past, my husband and I didn't always agree on what to do to help our son make progress. My husband isn't an educator. He doesn't speak the language or understand the steps in child development and how they play out. Unfortunately, I do. All too well. And the writing on the wall was very clear to me that without significant interventions, our son was going to quickly, and happily, fall far behind his peers. So I pushed forward. Through the arguments that I was looking for something to be wrong with our son. When he and others told me or implied that our son just needed more time to grow and mature. When we didn't see eye to eye and struggled with our marriage. I persisted because I was a mom and I wasn't going to accept less than the very best for my child. He would learn. He would develop. No one was going to give him less than their best. He deserved it. So thirteen years later, when the geneticist told me that there was a name for why my son was so beautifully different, I cried. Truth be told, I sobbed all the way home. Because I didn't give this to him, I didn't cause it. My extreme morning sickness through all nine months of my pregnancy didn't deprive him of something or traumatize his formation. Because those years of feeling so alone were worth it. Because those years of pushing doctors, pushing therapists, fighting with insurance companies, pushing teachers, educating family members, educating people in his world, mattered. It wasn't imagined. It wasn't exaggerated. It was real. And no mother ever again has to wait thirteen years for answers if her child has this condition.
For thirteen years, I think my husband has secretly carried the burden of blame. My husband is a brilliant man who barely made it through school. He can look at any problem and quickly, succinctly come up with a simple, direct solution. He invents and creates adaptations to existing machines to make them better, more efficient. But he struggled in school. It wasn't his thing. The original genetic test that was completed when our son was a year old showed that both my husband and our son had a small duplication on a section of their 17th chromosome. Because my husband had minor learning issues but none of our son's other "quirks", it was determined that duplication probably wasn't the cause of our son's issues. But secretly, my husband blamed himself. When the results were shared this time and it was clear that neither my husband or I had the gene mutation that our son carried, that it was a mutation unique to him and his development, it was like a burden was lifted. Blame was put aside. Our son was beautifully and wondrously made for a purpose.
As our oldest son prepares to graduate, he is planning the next phases of his life. For two years now, he has been in a rather serious relationship with a lovely young lady that we all love. When he received the news of our son's diagnosis, one of his first responses was to share the results with his young lady. Because they both have food allergies and she has some health issues, it was a relief to learn that they had one less thing to worry about in the future if they decide to start a family together.
The geneticist that we worked with was great. She made sure our son, my husband, and I all clearly understood the results and what they meant. She even had our son summarize for her what he had heard her say and what it meant to him. When asked how he felt about the findings, he responded, "I always wondered why I was different. Now I know. But it's okay because I'm nice and a lot of people aren't even nice people." And then the geneticist cried.
These findings mean nothing at school changes. He continues to receive learning support. We keep pushing him to do his best and work harder. We keep helping each new team understand him and how he learns best. We advocate for him and help him learn to advocate for himself. As he transitions to high school in a year, we start the process of preparing him for greater self-sufficiency. What that means, is yet to be determined. There will be future relationship and family implications but we are far from needing to address that yet. As we have done for thirteen years, we put one foot in front of the other and address each obstacle as it appears.
The name Snijders Blok-Campeau Syndrome, CHD3 Related Disorder, brings resolution. It brings us a degree of peace. It changes nothing. But it changes everything. One thing it doesn't change is how incredibly blessed we were the day the Lord gave us our son. He was wanted. He is needed. He is unique and beautiful in every way. I don't tell him often enough how incredibly lucky I am to be his Momma. God sent him to do beautiful, amazing things. He changes hearts. He spreads love. The world is a better place because he is in it.
After thirteen years of searching, the technology has finally caught up with us and we have resolution. We have answers!
Because our primary neurologist has moved to research and mapping the genome in search of undiagnosed disorders, he is seeing very few patients any more. Last fall, we were assigned a new Neurology Physicians Assistant. This winter, while meeting with us, she asked us if we would consider repeating our son's genetic testing that was previously completed when he was a year old. Her argument was that genetic testing has come so far in the last decade. She listed the different characteristics that he exhibits and stated that she strongly felt that he had a syndrome of some sort. If we were willing, she would like to see if research had caught up with us. After discussing it as a family, we agreed that it couldn't hurt to try.
So, after four months of waiting, the results have come in and we have answers. And the answers are absolutely, stunningly clear. His diagnosis fits him like the proverbial glove. Our son has a gene mutation known as a CHD3- Related Disorder, or Snijders Blok-Campeau Syndrome. Individuals with this syndrome typically have developmental delays, expressive language differences of unique type (apraxia and dysarthria), macrocephaly (large head size), low muscle tone, joint laxity, and scoliosis. Our son has every single characteristic of this syndrome, including many of the lesser known, less common characteristics.
Every cell in the human body has two CHD3 genes. These genes are extremely important to cell function because they are involved in chromatin function within the cells. It only takes a mutation to one CHD3 gene in one cell to cause major developmental issues in developing fetus. Our son's particular mutation replaced an "A" with a "G". The result was a previously unreported mutation of the CHD3 gene. In other words, he is unique, an original. But we already knew that.
So....
What does knowing mean? Why is it so important to us to be able to put a name to the condition? Why does it matter?
Knowing changed everything. And nothing. The moment the geneticist shared the results with us changed our entire world. And nothing at all. I know that doesn't make sense to most of you but to us that paradox is our absolute truth.
For thirteen years, we asked ourselves if we caused our son's differences. For thirteen years, we questioned every single decision we made because we were operating without an operator's manual. Our decisions were guesses. The news was beautiful and devastating. It brought us peace as it tore at our hearts. My husband and I have shed a lot of happy tears over the last few days.
For a very long time, I felt very alone on this journey. It's the primary reason I started blogging. I never wanted another parent out there living without answers to feel as if he or she were alone. Because if someone else is walking your journey, it's not just you. Someone else out there "gets it". As I have shared in the past, my husband and I didn't always agree on what to do to help our son make progress. My husband isn't an educator. He doesn't speak the language or understand the steps in child development and how they play out. Unfortunately, I do. All too well. And the writing on the wall was very clear to me that without significant interventions, our son was going to quickly, and happily, fall far behind his peers. So I pushed forward. Through the arguments that I was looking for something to be wrong with our son. When he and others told me or implied that our son just needed more time to grow and mature. When we didn't see eye to eye and struggled with our marriage. I persisted because I was a mom and I wasn't going to accept less than the very best for my child. He would learn. He would develop. No one was going to give him less than their best. He deserved it. So thirteen years later, when the geneticist told me that there was a name for why my son was so beautifully different, I cried. Truth be told, I sobbed all the way home. Because I didn't give this to him, I didn't cause it. My extreme morning sickness through all nine months of my pregnancy didn't deprive him of something or traumatize his formation. Because those years of feeling so alone were worth it. Because those years of pushing doctors, pushing therapists, fighting with insurance companies, pushing teachers, educating family members, educating people in his world, mattered. It wasn't imagined. It wasn't exaggerated. It was real. And no mother ever again has to wait thirteen years for answers if her child has this condition.
For thirteen years, I think my husband has secretly carried the burden of blame. My husband is a brilliant man who barely made it through school. He can look at any problem and quickly, succinctly come up with a simple, direct solution. He invents and creates adaptations to existing machines to make them better, more efficient. But he struggled in school. It wasn't his thing. The original genetic test that was completed when our son was a year old showed that both my husband and our son had a small duplication on a section of their 17th chromosome. Because my husband had minor learning issues but none of our son's other "quirks", it was determined that duplication probably wasn't the cause of our son's issues. But secretly, my husband blamed himself. When the results were shared this time and it was clear that neither my husband or I had the gene mutation that our son carried, that it was a mutation unique to him and his development, it was like a burden was lifted. Blame was put aside. Our son was beautifully and wondrously made for a purpose.
As our oldest son prepares to graduate, he is planning the next phases of his life. For two years now, he has been in a rather serious relationship with a lovely young lady that we all love. When he received the news of our son's diagnosis, one of his first responses was to share the results with his young lady. Because they both have food allergies and she has some health issues, it was a relief to learn that they had one less thing to worry about in the future if they decide to start a family together.
The geneticist that we worked with was great. She made sure our son, my husband, and I all clearly understood the results and what they meant. She even had our son summarize for her what he had heard her say and what it meant to him. When asked how he felt about the findings, he responded, "I always wondered why I was different. Now I know. But it's okay because I'm nice and a lot of people aren't even nice people." And then the geneticist cried.
These findings mean nothing at school changes. He continues to receive learning support. We keep pushing him to do his best and work harder. We keep helping each new team understand him and how he learns best. We advocate for him and help him learn to advocate for himself. As he transitions to high school in a year, we start the process of preparing him for greater self-sufficiency. What that means, is yet to be determined. There will be future relationship and family implications but we are far from needing to address that yet. As we have done for thirteen years, we put one foot in front of the other and address each obstacle as it appears.
The name Snijders Blok-Campeau Syndrome, CHD3 Related Disorder, brings resolution. It brings us a degree of peace. It changes nothing. But it changes everything. One thing it doesn't change is how incredibly blessed we were the day the Lord gave us our son. He was wanted. He is needed. He is unique and beautiful in every way. I don't tell him often enough how incredibly lucky I am to be his Momma. God sent him to do beautiful, amazing things. He changes hearts. He spreads love. The world is a better place because he is in it.
Sunday, February 3, 2019
Worry
Raising children is a stressful, beautiful experience. There is so much joy. There is also so much to worry about. Are they healthy? Are the growing and developing on target? Are they kind and resourceful and hard working? Do they have friends? Are they making good choices?
My worries with my oldest son were so different, and in hindsight, so trivial in comparison to my worries with my youngest son. My oldest was always smart and athletic and kind spirited. Things came easily to him. He made friends easily. He was very active and involved in sports until he reached an age when the sports became more aggressive than his nature. He loved hanging out with his buddies and being active but didn't care for the aggression and drive required to continue at his age level. I never worried about him getting involved in things he shouldn't because he chose friends wisely and tended to take kids under his wing who were in need of kindness. We talked and shared and spent time together so I knew his thoughts, his friends, and his decisions. He's a hard worker, civic minded volunteer, and reliable member of his community. Raising him to eighteen has been pretty simple. A couple heartaches and bumps along the way but all minimal and navigable. Our experiences with him have been very "typical".
Raising his brother has been one continuous worry. The things I worry about for him I rarely worried about for my oldest son. For example, birthday parties. Whether for him or for classmates, they leave me with a headache and half a sick stomach. There is nothing my youngest loves more than a party. Life is a gigantic source of celebration for him. Any opportunity to dance, laugh, and cheer is a good time for him.
Every year, he plans a series of birthday events for himself. He insists on a party with friends. He also chooses a special cake that he and I design and make together. Finally, he plans a family party for his family and neighbors. Without these three components, he is absolutely heartbroken. He loves a party!
When planning the friend party, we struggle to identify a handful of friends to invite. He considers everyone a friend. He loves everyone. Unfortunately, it's hard to identify kids that genuinely feel the same about him. As a result, he rarely has more than one or two friends come to his "events". He builds up the events in his head, creating this amazing time, with all these people. When the time comes and only one or two arrive, he still has an amazing time. He loves a party, even if it's with one or two. But my heart aches for him. Don't these kids get that behind the awkward, goofy, clumsy kid is the best friend they will ever have. He is loyal and loving to a fault. He forgives and loves unconditionally. Look past the exterior. He is the essence of love.
Conversely, it is equally stressful for him to be invited to birthday parties. I can count on one hand how many birthday parties he has been invited to for classmates. Each time, it is stressful to think through the logistics. Many of the parties involved physical activities like swimming, skating, etc. With his lack of safety awareness and gross motor coordination issues, that can be challenging. Factor in his large size and it makes it even more obvious how uncoordinated he is. Factor in his lack of social awareness and it gives me serious concern but we've always tried to make it work. As he gets older, we worry about the motivation for inviting him. Was he invited because they really want him there? Was he invited because every child was invited, even the ones the child didn't want invited. Or was he invited to be the butt of some mean kid's joke?
Today, we attended a roller skating party for a classmate. Yeah. A roller skating party. Dear Lord. You have NO idea how many prayers I said in anticipation of this party. In the end, it was as terribly bad and as amazingly good as I could have imagined. We asked him how he wanted to play this. We planned on either staying or leaving based on how things went and what he wanted us to do. At almost thirteen, we have pretty honest conversations about these things. He wanted us to come in and help him get his skates. So we went in; got the skates; laced him up and tied in (because he still has issues with proper shoe tying); and stood him up. He promptly fell really hard twice before taking a single step. It took both of us to keep him upright. He's almost six foot tall now. That's a lot of kid to keep upright on wheels.
The boy who invited him came over to check on him and encouraged him to go to the "practice area" until he felt more comfortable on his wheels. He even helped my husband get our son over the that area. It was incredibly kind and helped soothe some of my concerns. The boy seemed to genuinely like our son. He seemed like a very sweet boy. Thank you Lord.
After practicing, watching (away from the group), and making his way back over to us, he decided to take the skates off and take a break for a little bit. We encouraged our son to go join the group over in the birthday area. He found the birthday mom and she got him some pizza. It didn't take long for teenage boys to come in search of food. Our son came over and told us we could leave. He felt comfortable. We told him we were headed for groceries five minutes away and he could call if he needed us. I felt very anxious leaving but knew it was the right thing to do. Please Lord let everyone be kind to him. Please Lord don't let him hurt himself too badly. I feared broken bones. I feared a concussion.
When we came back, we found a very happy boy. He had made it out to the main skating floor and even did the limbo. As my husband helped our son get out of his skates, I had a chance to talk to a family member. She said her nephew told his mom that he wanted to invite our son because our son doesn't get invited to many parties and people are mean to him but he's his friend and he doesn't care what other people think. When our son went to say goodbye, the young man was so kind about saying goodbye and thanks for coming. Thank you Lord for kindness!
This boy's kindness may have been a small thing for him but it was HUGE for our son. He felt included. He felt "normal". This boy plays football and sports and is well liked at school. Including our son meant everything to him. It's all he talked about for weeks leading up to the party. It's all he talked about all day today. We have a lot of bruises and a stoved shoulder but that is minor in comparison to the happiness of the day. The bruises will heal. Ibuprofen and Tylenol will help the shoulder. A happy heart is worth it all.
This week our youngest turns thirteen. His friend party is coming up and I know of one child who is coming. That's okay. The kiddo coming is a lifelong, true friend. She, his Dad, and I will make it a great time. We will laugh and enjoy ourselves. The next night, we will celebrate his brother's performance at District Chorus (because of course, the first time he auditions, he gets accepted). Saturday, we will celebrate his birthday surrounded by our close circle of neighbors and family who "get him" and love him and support him through everything that he does.
Continue to stretch and grow. We love you and support you every step of the way. Along the way, may the Lord continue to put people in your path who will help you find love and support and growth. And may you continue to help them stretch and grow as well.
My worries with my oldest son were so different, and in hindsight, so trivial in comparison to my worries with my youngest son. My oldest was always smart and athletic and kind spirited. Things came easily to him. He made friends easily. He was very active and involved in sports until he reached an age when the sports became more aggressive than his nature. He loved hanging out with his buddies and being active but didn't care for the aggression and drive required to continue at his age level. I never worried about him getting involved in things he shouldn't because he chose friends wisely and tended to take kids under his wing who were in need of kindness. We talked and shared and spent time together so I knew his thoughts, his friends, and his decisions. He's a hard worker, civic minded volunteer, and reliable member of his community. Raising him to eighteen has been pretty simple. A couple heartaches and bumps along the way but all minimal and navigable. Our experiences with him have been very "typical".
Raising his brother has been one continuous worry. The things I worry about for him I rarely worried about for my oldest son. For example, birthday parties. Whether for him or for classmates, they leave me with a headache and half a sick stomach. There is nothing my youngest loves more than a party. Life is a gigantic source of celebration for him. Any opportunity to dance, laugh, and cheer is a good time for him.
Every year, he plans a series of birthday events for himself. He insists on a party with friends. He also chooses a special cake that he and I design and make together. Finally, he plans a family party for his family and neighbors. Without these three components, he is absolutely heartbroken. He loves a party!
When planning the friend party, we struggle to identify a handful of friends to invite. He considers everyone a friend. He loves everyone. Unfortunately, it's hard to identify kids that genuinely feel the same about him. As a result, he rarely has more than one or two friends come to his "events". He builds up the events in his head, creating this amazing time, with all these people. When the time comes and only one or two arrive, he still has an amazing time. He loves a party, even if it's with one or two. But my heart aches for him. Don't these kids get that behind the awkward, goofy, clumsy kid is the best friend they will ever have. He is loyal and loving to a fault. He forgives and loves unconditionally. Look past the exterior. He is the essence of love.
Conversely, it is equally stressful for him to be invited to birthday parties. I can count on one hand how many birthday parties he has been invited to for classmates. Each time, it is stressful to think through the logistics. Many of the parties involved physical activities like swimming, skating, etc. With his lack of safety awareness and gross motor coordination issues, that can be challenging. Factor in his large size and it makes it even more obvious how uncoordinated he is. Factor in his lack of social awareness and it gives me serious concern but we've always tried to make it work. As he gets older, we worry about the motivation for inviting him. Was he invited because they really want him there? Was he invited because every child was invited, even the ones the child didn't want invited. Or was he invited to be the butt of some mean kid's joke?
Today, we attended a roller skating party for a classmate. Yeah. A roller skating party. Dear Lord. You have NO idea how many prayers I said in anticipation of this party. In the end, it was as terribly bad and as amazingly good as I could have imagined. We asked him how he wanted to play this. We planned on either staying or leaving based on how things went and what he wanted us to do. At almost thirteen, we have pretty honest conversations about these things. He wanted us to come in and help him get his skates. So we went in; got the skates; laced him up and tied in (because he still has issues with proper shoe tying); and stood him up. He promptly fell really hard twice before taking a single step. It took both of us to keep him upright. He's almost six foot tall now. That's a lot of kid to keep upright on wheels.
The boy who invited him came over to check on him and encouraged him to go to the "practice area" until he felt more comfortable on his wheels. He even helped my husband get our son over the that area. It was incredibly kind and helped soothe some of my concerns. The boy seemed to genuinely like our son. He seemed like a very sweet boy. Thank you Lord.
After practicing, watching (away from the group), and making his way back over to us, he decided to take the skates off and take a break for a little bit. We encouraged our son to go join the group over in the birthday area. He found the birthday mom and she got him some pizza. It didn't take long for teenage boys to come in search of food. Our son came over and told us we could leave. He felt comfortable. We told him we were headed for groceries five minutes away and he could call if he needed us. I felt very anxious leaving but knew it was the right thing to do. Please Lord let everyone be kind to him. Please Lord don't let him hurt himself too badly. I feared broken bones. I feared a concussion.
When we came back, we found a very happy boy. He had made it out to the main skating floor and even did the limbo. As my husband helped our son get out of his skates, I had a chance to talk to a family member. She said her nephew told his mom that he wanted to invite our son because our son doesn't get invited to many parties and people are mean to him but he's his friend and he doesn't care what other people think. When our son went to say goodbye, the young man was so kind about saying goodbye and thanks for coming. Thank you Lord for kindness!
This boy's kindness may have been a small thing for him but it was HUGE for our son. He felt included. He felt "normal". This boy plays football and sports and is well liked at school. Including our son meant everything to him. It's all he talked about for weeks leading up to the party. It's all he talked about all day today. We have a lot of bruises and a stoved shoulder but that is minor in comparison to the happiness of the day. The bruises will heal. Ibuprofen and Tylenol will help the shoulder. A happy heart is worth it all.
This week our youngest turns thirteen. His friend party is coming up and I know of one child who is coming. That's okay. The kiddo coming is a lifelong, true friend. She, his Dad, and I will make it a great time. We will laugh and enjoy ourselves. The next night, we will celebrate his brother's performance at District Chorus (because of course, the first time he auditions, he gets accepted). Saturday, we will celebrate his birthday surrounded by our close circle of neighbors and family who "get him" and love him and support him through everything that he does.
Continue to stretch and grow. We love you and support you every step of the way. Along the way, may the Lord continue to put people in your path who will help you find love and support and growth. And may you continue to help them stretch and grow as well.
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