The past seventeen months have taught me a lot about life and love. I have learned to appreciate Brandt for all that he does and for how hard he has worked to get to where he is. Things that might come natural for others have meant months of therapy, practice, and hard work for Brandt. I have also learned to accept what is and to love Brandt for all that he is. It is too easy to look at other babies younger than Brandt and wish that he could do what they do, but all that negative energy is no good for anyone. I have learned that, though some of the roads less traveled can be scary, no one can fight for my son that way that I can. I can cheer him through life's most memorable moments and calm him through life's never-ending nightmares.
Life is all in what you make of it.
And, though, we have been to hell and back since February, we survived the fight. And, we will continue to fight. That's what we do. We fight, come up for air, and then fight some more. We know no mercy. No battle is too big; no battle too small. We kick ass, take names, and keep pushing onward toward victory. We Battle for Brandt and know no boundaries.
We have spent the past nine months exhausting every effort to provide Brandt with the best possible medical care. He has had 4 MRIs of the complete spine and brain, an EKG and echocardiogram of the heart, over 30 genetic and metabolic blood panels, extensive neurological evaluations, weekly speech and physical therapy sessions, ear tube surgery, multiple hearing tests, asthma/allergy tests.... and you'd think this list would end soon, but it is just beginning.
A couple weeks ago, I mentioned a "congenital birth defect" that needed to be corrected before age 2 (see blog: Scary Secrets). It was hoped that the problem would self-correct during the first six months of life. Unfortunately, that was not the case, and our pediatrician has referred us to a specialist to address this condition.
Part of me is ready to face the problem head-on and just knock it off the list while the other part of me sees another scary road I'll go down alone. Alone. Again. Another tough road. Alone.
And, I'm thinking, it is all a little too overwhelming for me right now. This is bad timing--and I know I can't control when life happens. But with all the stress of a terminally ill family member, it is just not a good time to be dealing with this, too.
In my research, I have found that this congenital defect, depending on severity, can be corrected with either hormone therapy or surgery. And, while I am ready to do whatever I need to do for my son, I fear the road ahead. It's hard not to see the roads we've already been down of appointment after appointment--with cancellation after cancellation for illness--and not see myself heading down those same endless, merciless roads again. I feel so tired, drained, overwhelmed, broken--and I'm hardly treading water.
Yet, I just have to trust that God will be there to guide me down the next road ahead. After all, what choice do I have?!?
Psalm 56:3 , 4 “What time I am afraid, I will trust in thee. In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me
Monday, October 29, 2012
Friday, October 19, 2012
Mommy Extroidinaire
I have been on a homemade toy kick lately, so I thought I would share my latest invention!
As is the movement to eat organic, healthy foods, I used to make Brandt homemade baby foods. I would spend a whole day preparing a wide variety of fresh fruits, vegetables, and lean meats for the month. Then, I would pour the puréed into food storage systems and freeze.
Now, I have 5 sets of storage systems--and finally put one of them to good use! I was able to create a toy to help Brandt with fine motor and cognition.
First, this toy can be used to match the container to the correct color hole--almost like a puzzle. Then, the lids can be opened up for Pom-Pom color-sorting.
It is very useful and simple to make. I basically lined the tray with different colors of construction paper and then lined matching cups. I bought a bag of Pom-poms at Walmart, but I know the dollar store carries then from time to time, too. It is simple and inexpensive but it can offer valuable learning enjoyment!
As is the movement to eat organic, healthy foods, I used to make Brandt homemade baby foods. I would spend a whole day preparing a wide variety of fresh fruits, vegetables, and lean meats for the month. Then, I would pour the puréed into food storage systems and freeze.
Now, I have 5 sets of storage systems--and finally put one of them to good use! I was able to create a toy to help Brandt with fine motor and cognition.
First, this toy can be used to match the container to the correct color hole--almost like a puzzle. Then, the lids can be opened up for Pom-Pom color-sorting.
It is very useful and simple to make. I basically lined the tray with different colors of construction paper and then lined matching cups. I bought a bag of Pom-poms at Walmart, but I know the dollar store carries then from time to time, too. It is simple and inexpensive but it can offer valuable learning enjoyment!
Thursday, October 18, 2012
A Burst of Tears
Today, an otherwise seemingly normal day, changed my world in an instant.
When I got home, I went outside to grab the mail. Great, more medical bills... $100 due to Miami Children's Hospital... What else is new... Another $370 to Martin Memorial... Whatever--I'll call and deal with that later. I then got to a letter from Treasure Coast Early Steps. I sat it aside and then came back to it after I finished with shredding the junk mail and nonsense bills. Finally, I opened it up to find a copy of Brandt's recent speech evaluation, and it shook my foundation to the core. It was all very formal, discussing his expressive and receptive language in terms of mean scores and standard deviations. It was a little overwhelming, and I had to read it through a few times to really grasp what it all meant.
It meant this. The average mean score among his peers was 100 with 85-115 being within normal range. Brandt scored the following:
Auditory comprehension: 69, Age equivalent: 8 months
Expressive Communication: 53, Age equivalent: 4 months
Total language score: 58, Age equivalent: 5 months
Keep in mind, Brandt is 17months old... And scoring as low as a 4 month old infant. It made me so sad. I have never been blind to Brandt's delays, but I never knew it was so bad. Those numbers hit me hard.
Then, the report continues to crumble my foundation. The speech pathologist notated "performance on this assessment indicates a severe receptive and expressive language delay." She also did an oral motor assessment, noting low tone in Brandt's cheeks, a shortened lingual frenulum (tongue-tied), and a slight, heart-shaped tongue tip. Tongue movement or exploration was not observed.
Darrin came home and I read the report to him, and then I fell into his arms crying....
How could this happen? I know, for the most bit, Brandt has been blessed with good health--but how can he have all of these things? Hypotonia in the trunk, feet, and mouth. Motor and speech delays. Anemia. Enlarged liver. Asthma/allergies. Undescended testes. Chronic sinusitis. Nystagmus. A heart murmur... And whatever else I have forgotten or is still to come...
It is just all so overwhelming. First, I wonder what the hell I did to cause this to happen to him. And then I feel like I am not doing enough for him, like I am failing him. It's hard not knowing what lies ahead and how to best help him. And, yet, I watch the gap continue to widen...
And, so, for today, I believe I am entitled to break down and just cry...
When I got home, I went outside to grab the mail. Great, more medical bills... $100 due to Miami Children's Hospital... What else is new... Another $370 to Martin Memorial... Whatever--I'll call and deal with that later. I then got to a letter from Treasure Coast Early Steps. I sat it aside and then came back to it after I finished with shredding the junk mail and nonsense bills. Finally, I opened it up to find a copy of Brandt's recent speech evaluation, and it shook my foundation to the core. It was all very formal, discussing his expressive and receptive language in terms of mean scores and standard deviations. It was a little overwhelming, and I had to read it through a few times to really grasp what it all meant.
It meant this. The average mean score among his peers was 100 with 85-115 being within normal range. Brandt scored the following:
Auditory comprehension: 69, Age equivalent: 8 months
Expressive Communication: 53, Age equivalent: 4 months
Total language score: 58, Age equivalent: 5 months
Keep in mind, Brandt is 17months old... And scoring as low as a 4 month old infant. It made me so sad. I have never been blind to Brandt's delays, but I never knew it was so bad. Those numbers hit me hard.
Then, the report continues to crumble my foundation. The speech pathologist notated "performance on this assessment indicates a severe receptive and expressive language delay." She also did an oral motor assessment, noting low tone in Brandt's cheeks, a shortened lingual frenulum (tongue-tied), and a slight, heart-shaped tongue tip. Tongue movement or exploration was not observed.
Darrin came home and I read the report to him, and then I fell into his arms crying....
How could this happen? I know, for the most bit, Brandt has been blessed with good health--but how can he have all of these things? Hypotonia in the trunk, feet, and mouth. Motor and speech delays. Anemia. Enlarged liver. Asthma/allergies. Undescended testes. Chronic sinusitis. Nystagmus. A heart murmur... And whatever else I have forgotten or is still to come...
It is just all so overwhelming. First, I wonder what the hell I did to cause this to happen to him. And then I feel like I am not doing enough for him, like I am failing him. It's hard not knowing what lies ahead and how to best help him. And, yet, I watch the gap continue to widen...
And, so, for today, I believe I am entitled to break down and just cry...
Wednesday, October 17, 2012
Brandt's Everything
Some days, I wish with all of my heart that I could stay home and be Brandt's everything-- his OT, his PT, and his speech pathologist. But, I cannot be everything all the time. I have to trust the people left in charge of his care during the day, and be momma-extraordinaire by night!
When I was trying to help Brandt crawl and walk, I bought everything I could. We have an infant exercise ball, scooter board, 3 ride on toys, 2 stand 'n' play toys, 2 push toys, an exersaucer, and a jumparoo. Anything I could think of, I bought! And I'm sure any parent in my position would do the same. The physical therapist tells me I have too many toys, and friends say I have enough to run a daycare!
So, recently, I have taken a particular interest in Brandt's fine motor. I bought a few toys--such as knob puzzles, stacking cups, blocks, stacking rings, legos, a shape sorter, pound a peg, and a latch board. Still, I wanted more so I took some advice from the OT and made it my own.
I was told to have Brandt put Cheerios in an empty water bottle--but that seemed to lack stimulation. So, I took it a step further.
With the help of a friend, I took an empty 2 liter and cut out a hole at the bottom (to get the stuff out). I lined the edges with red duck tape so no one would get cut or scraped. Then, to make sure the objects don't go flying out, a piece of blue felt was affixed with brads. I then gave Brandt various-sized glitter pom-poms to drop down the spout.
He absolutely loved it. The good thing about different sizes is that some of the pom-poms went straight down the spout with no problems while he had to use his index finger to push larger ones down. I found that if I just let him grab them, he would shovel them in his hands and rub his hands all over the spout until they eventually fell in. If I used my pincher grasp to give them to him one at a time, he used his pinch grasp and put the Pom-poms in the container with far greater success and precision.
After 20 minutes of putting the glitter Pom-poms in and taking them out, he got upset when I tried to put it away for bedtime. I was so happy, I gave him another ten minutes--and he was mad again when that time was up. I was so happy that he enjoyed it--and it cost me like $3! :)
One suggested--weigh it down. I put a bag of dried beans inside to help with his unsteadiness, but you could use leg weights, bean bags, canned veggies, etc.
When I was trying to help Brandt crawl and walk, I bought everything I could. We have an infant exercise ball, scooter board, 3 ride on toys, 2 stand 'n' play toys, 2 push toys, an exersaucer, and a jumparoo. Anything I could think of, I bought! And I'm sure any parent in my position would do the same. The physical therapist tells me I have too many toys, and friends say I have enough to run a daycare!
So, recently, I have taken a particular interest in Brandt's fine motor. I bought a few toys--such as knob puzzles, stacking cups, blocks, stacking rings, legos, a shape sorter, pound a peg, and a latch board. Still, I wanted more so I took some advice from the OT and made it my own.
I was told to have Brandt put Cheerios in an empty water bottle--but that seemed to lack stimulation. So, I took it a step further.
With the help of a friend, I took an empty 2 liter and cut out a hole at the bottom (to get the stuff out). I lined the edges with red duck tape so no one would get cut or scraped. Then, to make sure the objects don't go flying out, a piece of blue felt was affixed with brads. I then gave Brandt various-sized glitter pom-poms to drop down the spout.
He absolutely loved it. The good thing about different sizes is that some of the pom-poms went straight down the spout with no problems while he had to use his index finger to push larger ones down. I found that if I just let him grab them, he would shovel them in his hands and rub his hands all over the spout until they eventually fell in. If I used my pincher grasp to give them to him one at a time, he used his pinch grasp and put the Pom-poms in the container with far greater success and precision.
After 20 minutes of putting the glitter Pom-poms in and taking them out, he got upset when I tried to put it away for bedtime. I was so happy, I gave him another ten minutes--and he was mad again when that time was up. I was so happy that he enjoyed it--and it cost me like $3! :)
One suggested--weigh it down. I put a bag of dried beans inside to help with his unsteadiness, but you could use leg weights, bean bags, canned veggies, etc.
Wednesday, October 10, 2012
Scary Secrets
Bloggers, forgive me for in advance, but this blog is going to be vague. You must be wondering why I would post an entry so vague after my many tell-all posts...truth be told, this blog is more than just a way of sharing with others, but it is also a way for me to express my feelings and unleash my deepest frustrations. Blogging helps to cope and sort through my feelings, and, so, this blog will be just that.
Let me preface with this. Brandt has been sick with the flu for a week, and since I am going on little sleep, I am getting overly analytical and emotional.
This morning, I was sitting on the couch after I put Brandt down for a nap, and all of the sudden this idea pops into my head--a congenital problem noticed at birth. And, the obsessing began...
When Brandt was born and examined, a congenital abnormality was indicated. We were told it was no big deal, and it should correct itself within the first six months of birth. We didn't think anything of it, because is was a common occurrence in babies. And, to be honest, we never really took notice of it. Months pressed on, and we sort of forgot about it.
Then, light was brought back to the matter when we went to the pediatrician for a pre-op physical and health history report. I briefly mentioned it in a past blog but I wasn't comfortable with sharing the intimate details--just a brief reference that "other problems" were indicated. On the report, the doctor had notated this abnormality, without even mentioning it to us during the examination. I didn't even know what it meant--if it was a problem or just a fact--so I mentioned it a couple weeks later when Brandt was back at the pediatrician. The doctor indicated that they like to give the problem time to self-resolve, as it would in most cases. He was so matter-of-a-fact and casual about it that I was not alarmed at all. He stated that if the problem didn't correct by 18 months, it might need to be surgically corrected--but he was confident that would not be the case. He shrugged it off and moved on, and so did we. Once again, we blew it off and forgot about it.
It has been about four months since we spoke to the pediatrician in those regards, so I am not exactly sure why this incredible fear just overtook my body. All of the sudden, I found myself freaking out. Panicking. Heart racing. One hand on my forehead and the other on my keyboard, I combed through page after page, reviewing articles from some of the top children's hospitals in the country. The word was the same--This problem must be corrected by age two or there will be long term effects. Long term effects--he is only 17 months and I have to worry about 20-30 years down the road.
I absolutely cannot believe that I forgot to monitor this issue. How could I forgot to monitor something so important--something that could carry lifetime effects? How could I have been that consumed with all the developmental deficits that I neglected his physical health concerns? Am I that out of touch with reality and my role as a mother? It is shameful.
And it is all just a bit too overwhelming for me. I'm already 10 steps ahead of where I should be. I'm thinking about what if he does have to have surgery? I don't know that I have the strength to see another specialist and do another surgery, and all the appointments that go with it. And how invasive would the procedure be, and what is the recovery like? Would I need to take time off work--my thoughts are just all over the place. And I'm thinking I'm just too drained, exhausted, damaged to go down another dark road. I'm running low on gas--I just can't go down anymore winding roads. I'm too broken for all of this. I'm already overwhelmed, and my fears haven't even been confirmed yet. It's all just too much for me.
And, then, as I continue to comb through the webpages, I wonder, does this somehow tie to everything else? Is this an important detail that I too quickly dismissed and neglected to tell all of his doctors? It this the missing piece that would give way to the picture?
And, once again, I am getting too far ahead of myself. Definitely need to rest and regroup. But, just for the record, he has a well-baby appointment at the end of the month so this problem will have to be addressed head-on then. I just hope I can hold it all together until then.
Let me preface with this. Brandt has been sick with the flu for a week, and since I am going on little sleep, I am getting overly analytical and emotional.
This morning, I was sitting on the couch after I put Brandt down for a nap, and all of the sudden this idea pops into my head--a congenital problem noticed at birth. And, the obsessing began...
When Brandt was born and examined, a congenital abnormality was indicated. We were told it was no big deal, and it should correct itself within the first six months of birth. We didn't think anything of it, because is was a common occurrence in babies. And, to be honest, we never really took notice of it. Months pressed on, and we sort of forgot about it.
Then, light was brought back to the matter when we went to the pediatrician for a pre-op physical and health history report. I briefly mentioned it in a past blog but I wasn't comfortable with sharing the intimate details--just a brief reference that "other problems" were indicated. On the report, the doctor had notated this abnormality, without even mentioning it to us during the examination. I didn't even know what it meant--if it was a problem or just a fact--so I mentioned it a couple weeks later when Brandt was back at the pediatrician. The doctor indicated that they like to give the problem time to self-resolve, as it would in most cases. He was so matter-of-a-fact and casual about it that I was not alarmed at all. He stated that if the problem didn't correct by 18 months, it might need to be surgically corrected--but he was confident that would not be the case. He shrugged it off and moved on, and so did we. Once again, we blew it off and forgot about it.
It has been about four months since we spoke to the pediatrician in those regards, so I am not exactly sure why this incredible fear just overtook my body. All of the sudden, I found myself freaking out. Panicking. Heart racing. One hand on my forehead and the other on my keyboard, I combed through page after page, reviewing articles from some of the top children's hospitals in the country. The word was the same--This problem must be corrected by age two or there will be long term effects. Long term effects--he is only 17 months and I have to worry about 20-30 years down the road.
I absolutely cannot believe that I forgot to monitor this issue. How could I forgot to monitor something so important--something that could carry lifetime effects? How could I have been that consumed with all the developmental deficits that I neglected his physical health concerns? Am I that out of touch with reality and my role as a mother? It is shameful.
And it is all just a bit too overwhelming for me. I'm already 10 steps ahead of where I should be. I'm thinking about what if he does have to have surgery? I don't know that I have the strength to see another specialist and do another surgery, and all the appointments that go with it. And how invasive would the procedure be, and what is the recovery like? Would I need to take time off work--my thoughts are just all over the place. And I'm thinking I'm just too drained, exhausted, damaged to go down another dark road. I'm running low on gas--I just can't go down anymore winding roads. I'm too broken for all of this. I'm already overwhelmed, and my fears haven't even been confirmed yet. It's all just too much for me.
And, then, as I continue to comb through the webpages, I wonder, does this somehow tie to everything else? Is this an important detail that I too quickly dismissed and neglected to tell all of his doctors? It this the missing piece that would give way to the picture?
And, once again, I am getting too far ahead of myself. Definitely need to rest and regroup. But, just for the record, he has a well-baby appointment at the end of the month so this problem will have to be addressed head-on then. I just hope I can hold it all together until then.
Tuesday, October 9, 2012
Exploring New Lands
In light of recent circumstances, I did a little sole-searching in regards to Brandt's care. I talked it over with friends and finally decided to look at my options. My thought was that if nothing else, I would at least feel more confidence with where he is at now.
So I toured Woodlands Montessori School today. It was a very eye-opening experience for me. As I entered the facility, my first thoughts were that it was so inviting and quaint. They had a beautiful display of fall decor that set a warm feeling.
I was immediately greeted by an administrative assistant as I entered the office, and then I watched a short video about the Montessori method, which I was already familiar with from college practicum courses. Following the video, the Director came took me on a tour of the classrooms. I found the classrooms to be very clean, large, and spacious. There was all sorts of room for the children to roam and explore, and there were tons of learning labs to facilitate these endeavors. It was so incredible to see such young children with such independence. The toddlers were doing learning labs (or whatever Montessori calls them) without being directed. And, they were enjoying the learning process. The rooms had 10-15 kids in each, but they were so calm and quiet. The classroom climate was so amazing. Each classroom led to a common courtyard where the children were able to learn and explore at the same time. The children swept a mini bridge and the side walk. They watered the flowers and grew vegetables! It was just so incredible.
Finally we made it into the classroom where Brandt would be. The director told me to put Brandt down so he could explore his new surroudings. Immediately, she picked up on what was my fear--his developmental delay. She asked if he was a new walker, and I told her he had only been walking for a couple weeks and was in physical therapy. I knew I would need to be forth-coming about this because he would need to be at a facility that would allow his physical and speech therapists to come. As I was telling her about this, my heart was racing. This was the one thing that worried me about sending him to another facility. And, as quick as I told her, she replied by telling me she had three other students who were getting specialized services. It was such a huge relief to hear. We watched Brandt explore, which really was him destroying others' work. The Director then gave him a puzzle. Again, I shrieked. Brandt took all the pieces out and threw them across the table. I tried to give them back to him to put them back in, but he was unable. I wasn't surprised that he was unable to do puzzles because I try to work with him on that on the weekends and evenings--with little success. Brandt then left the table and started to walk around the room. And-BAM- his wobbly hips and jello legs lost control, and he tumbled backwards. We both shrieked, and I knew it was going to be a problem. She looked horrified, although I tried to blow it off.
She then took me back to the office and went over some of the procedures and registration. She explained that if we should choose for Brandt to attend there, Brandt would need to be walking more stable and controlled. And, when he was good with that, he could come in for a two-day trial. Based upon how he does with trial would determine if they would allow him admittance into their facility. Woodlands does not accept just anybody, and my gut sort of tells me that Brandt just might be te type of child they try to filter out.
I have a lot of mixed feelings that I am trying to sort through. On one hand, if I had a "normal" child, I would switch to Woodlands in a heartbeat. Without even a second thought. But, I don't. Clearly Brandt is going to need a couple more months of walking before he is steady. And even if he gets steady with his walking, I am then worried that his fine motor delays will be a problem. All those little learning labs that they do are far above him. Even cognitively, I am not sure that he is where they are. In fact, I know he is not. It makes me sad. It truly sucks because no matter how much he is advancing, he is always still behind.
Immediately after leaving there, I thought maybe I would try to transition him at Christmas break. But, then, I know that they do not accept just anyone. Who else would they try to filter out besides special needs kids--I just know that is who they are trying to filter out. And, I am not sure that I am ready to watch his delays hold him back; I am not sure that I am ready to cope with rejection.
But, for now, Brandt's current daycare offers him the freedom to be a baby and just play. It is not targetted towards independence and learning, but it might be a more relaxed environment for him. His current daycare gets a little chaotic but that's just kids being kids. It is much more colorful than a Montessori school, and I see a lot more kids smiling!
But, in any event, today was an interesting day. It was very "interesting" to tour some new lands that is Woodlands.
So I toured Woodlands Montessori School today. It was a very eye-opening experience for me. As I entered the facility, my first thoughts were that it was so inviting and quaint. They had a beautiful display of fall decor that set a warm feeling.
I was immediately greeted by an administrative assistant as I entered the office, and then I watched a short video about the Montessori method, which I was already familiar with from college practicum courses. Following the video, the Director came took me on a tour of the classrooms. I found the classrooms to be very clean, large, and spacious. There was all sorts of room for the children to roam and explore, and there were tons of learning labs to facilitate these endeavors. It was so incredible to see such young children with such independence. The toddlers were doing learning labs (or whatever Montessori calls them) without being directed. And, they were enjoying the learning process. The rooms had 10-15 kids in each, but they were so calm and quiet. The classroom climate was so amazing. Each classroom led to a common courtyard where the children were able to learn and explore at the same time. The children swept a mini bridge and the side walk. They watered the flowers and grew vegetables! It was just so incredible.
Finally we made it into the classroom where Brandt would be. The director told me to put Brandt down so he could explore his new surroudings. Immediately, she picked up on what was my fear--his developmental delay. She asked if he was a new walker, and I told her he had only been walking for a couple weeks and was in physical therapy. I knew I would need to be forth-coming about this because he would need to be at a facility that would allow his physical and speech therapists to come. As I was telling her about this, my heart was racing. This was the one thing that worried me about sending him to another facility. And, as quick as I told her, she replied by telling me she had three other students who were getting specialized services. It was such a huge relief to hear. We watched Brandt explore, which really was him destroying others' work. The Director then gave him a puzzle. Again, I shrieked. Brandt took all the pieces out and threw them across the table. I tried to give them back to him to put them back in, but he was unable. I wasn't surprised that he was unable to do puzzles because I try to work with him on that on the weekends and evenings--with little success. Brandt then left the table and started to walk around the room. And-BAM- his wobbly hips and jello legs lost control, and he tumbled backwards. We both shrieked, and I knew it was going to be a problem. She looked horrified, although I tried to blow it off.
She then took me back to the office and went over some of the procedures and registration. She explained that if we should choose for Brandt to attend there, Brandt would need to be walking more stable and controlled. And, when he was good with that, he could come in for a two-day trial. Based upon how he does with trial would determine if they would allow him admittance into their facility. Woodlands does not accept just anybody, and my gut sort of tells me that Brandt just might be te type of child they try to filter out.
I have a lot of mixed feelings that I am trying to sort through. On one hand, if I had a "normal" child, I would switch to Woodlands in a heartbeat. Without even a second thought. But, I don't. Clearly Brandt is going to need a couple more months of walking before he is steady. And even if he gets steady with his walking, I am then worried that his fine motor delays will be a problem. All those little learning labs that they do are far above him. Even cognitively, I am not sure that he is where they are. In fact, I know he is not. It makes me sad. It truly sucks because no matter how much he is advancing, he is always still behind.
Immediately after leaving there, I thought maybe I would try to transition him at Christmas break. But, then, I know that they do not accept just anyone. Who else would they try to filter out besides special needs kids--I just know that is who they are trying to filter out. And, I am not sure that I am ready to watch his delays hold him back; I am not sure that I am ready to cope with rejection.
But, for now, Brandt's current daycare offers him the freedom to be a baby and just play. It is not targetted towards independence and learning, but it might be a more relaxed environment for him. His current daycare gets a little chaotic but that's just kids being kids. It is much more colorful than a Montessori school, and I see a lot more kids smiling!
But, in any event, today was an interesting day. It was very "interesting" to tour some new lands that is Woodlands.
Tuesday, October 2, 2012
Words Can't Describe
Today has been an exhausting and draining day. Words can only begin to describe my day, but words cannot hit the deep depths of numbness I am feeling.
This morning while I was busy reading and teaching, I missed a very important phone call--Brandt's daycare. Because my phone is always on silent at work, they called Darrin. Darrin texted me "Brandt got hurt. Going to ER." Reading these terrifying words immediately sent my heart racing and my head spinning. I immediately tried to call him back but no answer. Panic swept over me. Not knowing what to do or what had happened, I then called the director of Brandt's daycare, who informed me that Brandt was trying to walk and fell back in a shelf and bumped his head. She said he had some swelling and a bruise on the back of his head and neck, and she had advised Darrin to have him looked at.
Other colleagues offer to take my class, but with Darrin not answering there was nothing I could do. I did not know what hospital he was at, or the severity of what was going on. And, I was in shock and unsure of how to react, or if there was a reaction warranted.
All I knew was that one of my biggest fears was realized--I always fear Brandt getting hurt at school. At home, I am constantly next to him. I know he is bold, and he often tries to do more than he is able, so I stay within close proximity and block off potential hazards. And, not meaning to offend anyone, I really do not trust anyone with Brandt--mommy knows and takes car of him best.
As I had a scheduled meeting with the "big dogs" to attend right after I got off the phone with the daycare, an hour had past before I heard from Darrin. Finally Darrin called me back with an update. He reported a minor contusion to the back of the head, but said Brandt should be okay-- just needed to watch him extra closely. The nurse iced Brandt's head and sent him on his way. Disaster averted, this time.
But my day did not end there, oh no...
The one thing that scares me the most with Brandt (other than him getting seriously injured at school) is the uncertainty of the future. I often wonder if Brandt will just eventually catch up, or if he'll always be about 6 months behind his peers. Or, will the gap continue to widen? Will he need continued services once he's in school, and if he does, will those services be available to him? It is a dark road of uncertainty ahead, so I try to not look too far ahead. Still, there are times when I can't help but wonder.
There are times when family, friends, and associates with special needs children--who are much older than Brandt--go through the day to day struggles. And, when I see their struggles, I feel their struggles. I see the road they are traveking down, and I see our pathway ahead. Their heart aches for their child, and my heart aches. They cry out of fear, and I cry alongside them. And, somewhere in the midst of emotions, we feel it all together and try to help each other through.
And, with all that was going on in my personal life today, today was just not the day for me to feel for others. Not emotionally. My already-aching heart was so full of personal angst that I was too vulnerable. and, yet, life is not about a perfectly planned emotional pitfall. So, as I sat alongside a crying mother discussing her fears for her child, I found tears slowly slipping away, too. It was a whirlwind of indescribable emotions and feelings. I felt for her and her son, me and my son, and all parents going through the process. I wanted to jump up and hug her; I wanted to run away and cry. I wanted to tell her the untold secrets and answers, but there are no answers--or, of there are, I am still looking for them myself.
And, so, internal strength took over. My emotionless body let the puppet strings lead the way and somehow God helped me to finish the day with a smile on my face. But, now that the day is all said and done, I retire back to the emotionless state that started my day. I hang my head and say a prayer for a long night of good rest.
This morning while I was busy reading and teaching, I missed a very important phone call--Brandt's daycare. Because my phone is always on silent at work, they called Darrin. Darrin texted me "Brandt got hurt. Going to ER." Reading these terrifying words immediately sent my heart racing and my head spinning. I immediately tried to call him back but no answer. Panic swept over me. Not knowing what to do or what had happened, I then called the director of Brandt's daycare, who informed me that Brandt was trying to walk and fell back in a shelf and bumped his head. She said he had some swelling and a bruise on the back of his head and neck, and she had advised Darrin to have him looked at.
Other colleagues offer to take my class, but with Darrin not answering there was nothing I could do. I did not know what hospital he was at, or the severity of what was going on. And, I was in shock and unsure of how to react, or if there was a reaction warranted.
All I knew was that one of my biggest fears was realized--I always fear Brandt getting hurt at school. At home, I am constantly next to him. I know he is bold, and he often tries to do more than he is able, so I stay within close proximity and block off potential hazards. And, not meaning to offend anyone, I really do not trust anyone with Brandt--mommy knows and takes car of him best.
As I had a scheduled meeting with the "big dogs" to attend right after I got off the phone with the daycare, an hour had past before I heard from Darrin. Finally Darrin called me back with an update. He reported a minor contusion to the back of the head, but said Brandt should be okay-- just needed to watch him extra closely. The nurse iced Brandt's head and sent him on his way. Disaster averted, this time.
But my day did not end there, oh no...
The one thing that scares me the most with Brandt (other than him getting seriously injured at school) is the uncertainty of the future. I often wonder if Brandt will just eventually catch up, or if he'll always be about 6 months behind his peers. Or, will the gap continue to widen? Will he need continued services once he's in school, and if he does, will those services be available to him? It is a dark road of uncertainty ahead, so I try to not look too far ahead. Still, there are times when I can't help but wonder.
There are times when family, friends, and associates with special needs children--who are much older than Brandt--go through the day to day struggles. And, when I see their struggles, I feel their struggles. I see the road they are traveking down, and I see our pathway ahead. Their heart aches for their child, and my heart aches. They cry out of fear, and I cry alongside them. And, somewhere in the midst of emotions, we feel it all together and try to help each other through.
And, with all that was going on in my personal life today, today was just not the day for me to feel for others. Not emotionally. My already-aching heart was so full of personal angst that I was too vulnerable. and, yet, life is not about a perfectly planned emotional pitfall. So, as I sat alongside a crying mother discussing her fears for her child, I found tears slowly slipping away, too. It was a whirlwind of indescribable emotions and feelings. I felt for her and her son, me and my son, and all parents going through the process. I wanted to jump up and hug her; I wanted to run away and cry. I wanted to tell her the untold secrets and answers, but there are no answers--or, of there are, I am still looking for them myself.
And, so, internal strength took over. My emotionless body let the puppet strings lead the way and somehow God helped me to finish the day with a smile on my face. But, now that the day is all said and done, I retire back to the emotionless state that started my day. I hang my head and say a prayer for a long night of good rest.
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