Rare Disease Day--Our Blake

Today is Rare Disease Day, and people all over the world with children that have rare diseases are bringing more awareness to their child's diseases or disorders. Until this year, I never considered any of my kids to have a rare disease. I decided to look up "mastocytosis," the disease that my middle child, Blake, was born with, and there it was, on the NORD website (National Organization for Rare Disorders):

Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in the skin, bone marrow, and internal organs (liver, spleen, gastrointestinal tract and lymph nodes). Cases beginning during adulthood tend to be chronic and involve the bone marrow in addition to the skin, whereas, during childhood, the condition is often marked by skin manifestations with minimal to no internal organ involvement and can often resolve during puberty. In most adult patients, mastocytosis tends to be persistent, and may progress into a more advanced category in a minority of patients. Mastocytosis can be classified to a specific type depending on the patient’s symptoms and overall presentation.

Blake when he was around one year old.

Blake presented with two spots on his stomach that looked like birthmarks. The doctors and nurses said nothing was wrong and did not suspect a thing. It wasn't until we took him home from the hospital that things got scary. He would flush, or turn red, over his entire body. I remember holding him and watching as the redness would start just around his nose, and slowly spread until his whole body was red. The next symptom was blisters on the large spots on his stomach, and they looked so painful.

When he was just a week old, I took him into the pediatrician and showed her what was happening. She had no idea what would cause the blistering, and wasn't sure about the flushing, either, but guessed it was impetigo and prescribed some cream. When that didn't work, I came back a week later, more scared than ever. I pleaded with her to tell me what was wrong with my baby. She told me she had no idea, and that I could call the dermatologist, since it seemed to be related to the skin.

I called that day, and of course with most specialists, there was a back up of 4 months just to get an appointment. But when you are a mom, sometimes you can't take no for an answer. In tears, I begged the nurse on the other line to get my child seen right away. I told her that something was really wrong, and I was scared to death. I told her about the symptoms, and how when he flushed he squirmed and seemed so uncomfortable, and that he now seemed itchy. She said the best she could do was put him on a cancelation list. I did everything I could to help him--the only thing left was to pray.

The next day, just before he was 3 weeks old, I got a call from the dermatologist office--they had an opening and wanted me to come the following day. I cried and thanked them. I was so relieved that I would finally get answers for my son's symptoms. Google was no help, and my pediatrician was stunned, so this had to be the place where he would get some kind of diagnosis.

As soon as the dermatologist took one look at Blake, she diagnosed him with "mastocytosis," and said that his condition was most likely uticaria pigmentosa, or related to the skin only. We had to run some blood tests to rule out internal organ or bone marrow involvement (which came back negative.) She was able to explain to me the reason behind the symptoms in a way that made sense. She told me how to care for him. She said by age two, the symptoms would almost disappear, and that he would keep getting new spots all over his body until then. She prescribed medication for him when he was 4 months old to control the histamines in his body, and also prescribed an epi-pen because there was always a risk that when he flushed, he would go into anaphylactic shock.

So until he was two, I watched him like a hawk. I ached for him every time he flushed, and began keeping a count of how many times he did each day. The numbers slowly went down from around 8 flushes a day to once or twice a week by the time he was two. We went to the dermatologist every 4 weeks until he was that age, and when he turned two, and his symptoms all but disappeared, she said we would not need to come back unless something went wrong again. She said his spots would slowly fade until he reached adolescence.

We haven't been back to see her since that time. Though there were a few scares after that in which we simply called her (she gave us her cell phone number) there was nothing to be worried about. He learned to accept his spots and every day I would tell him that the spots made him special. He's 9 years old now and the spots really have been fading. I don't think anyone in our family gives them a second thought--they are just part of his childhood, and in a few years, they will only be a memory.

It's always frightening when your child's pediatrician doesn't know what is going on with your child, and you have to be sent to a specialist. I feel so lucky that the dermatologist knew exactly what it was and could help us. I am positive that many parents don't have that experience and might go years before they know what is causing their child's symptoms.

I don't talk much about Blake, because his mastocytosis doesn't affect him at all anymore--only the spots remain, for now. I feel blessed to be his mom and to have the chance to learn more about a rare disease like mastocytosis. I've never had a chance to help another parent concerning this disease before, probably because it is so rare, but I have found wonderful Facebook groups in the last few years. Blake has never met another child with the disease. But he knows he is special because he is Blake! The disease does not define him.

If you are writing about a rare disease today, link your blog to this one! Spread more awareness!
http://myunplannedson.com/2016/02/29/world-rare-disease-day-rarewriter-blog-linkup/

Miracles

I hope I don't jinx myself by writing this post, but I really think a miracle is happening in our house, right now. I don't know why it took so long for this miracle to happen, but it finally is. Julianna has not bitten her hands in anger or frustration for 9 days in a row. Nine days where our house has felt a little more normal, peaceful, and enjoyable. Nine days is a miracle, because we've been dealing with this troubling behavior for almost 9 years, pretty much daily. I almost don't want to believe it, but it really is happening, and it's all because of that 1, 2, 3 Magic program we are doing with her.

It's interesting that I've tried literally every method out there to rid her of this behavior. Chewelry (chewable bracelets and necklaces), flavored chew sticks (we got her chocolate), completely avoiding the biting, telling her to count instead of bite, putting gloves on her hands when she bites (which she hates the feeling of), physically holding her hands down and away from her mouth, the list goes on. Nothing has worked. I guess what I am realizing is that sometimes, when you are raising children, things don't always change when you want them to, no matter how hard you pray or try. Sometimes they change because you felt inspired to take them to a new doctor, who introduces you to a method that you think has no possible chance of working. And then you try it, and it does. It's a miracle. After all these years, we are starting to put this one troubling behavior of hers behind us, and that means our family can be happier. But most importantly, she can, too. She will feel better and more at peace with herself because she doesn't have that impulse anymore.

We are hoping to get to 21 days in a row (the time it typically takes to break a habit) and if we get there, she will get her new doll and her psychologist said she will give her a nice certificate and we can have a little party for her. She's just as excited as we are! When we met with her last Saturday, and told her all the progress she's been making, her response was, "Oh, praise the Lord." And she is right. It took a long time to get to this point, but we got there. And I've had to trust in God for all these years, believing that we could conquer this.

I have been studying the topic "Trust in God" in my scriptures this week. I think it was something I needed to really, truly understand in my life right now. On Monday morning, after I had a quick but meaningful study (you never know when your kids will come storming into your bedroom), I came downstairs and remembered Julianna had to do a make-up math test because she got a low score. We sat down to do these problems, and I thought, there is no way I am ever going to help her understand this stuff. How is she ever going to learn this? How am I going to find a way to help her learn? And how will her teachers and aide do the same? I felt very frustrated and defeated, but we got through it the best we could (mostly me doing it) and I let her finish getting ready for school. Just when I started to feel very down and hopeless about the entire school situation, I heard these words come to my mind: "Trust in God." I immediately felt peace and hope again, and tears came to my eyes. She will be able to learn it, just maybe not right now. But I think about how far she's come in school, and again, I think of the miracles we have witnessed. I never thought she could learn to read, and she has. I never thought she could learn simple addition, and she did. I never thought she could learn to spell common words, and she can, all by herself. Each thing we accomplish with her just takes time, much more time that other kids would need. But she will get there.

Other little miracles happening right now...Nathan knows about 4 colors and can identify them. He has been working with an early start teacher once a week for an hour for about 3 months now, and he's already met all his goals twice in that short of a time. He continues to amaze me every day, and is the friendliest little baby around. Everywhere we go, he waves and says hi to people, and brightens up their day with his smile. He tries to count objects, and he sings little songs, and he knows animal sounds, and he just keeps on progressing rapidly. I don't think anything will slow him down at this point.

And of course I can't forget Blake. Doing well in school, becoming more independent, writing his own stories just like I did when I was young, and becoming an excellent piano player. He even wants to play the flute and uses my old flute to practice on. Yesterday when I got home from the store, he opened the garage door with the flute in his hand, excited to tell me that he could now make two sounds out of it. I love seeing that he's excited to play instruments and wants to do well. And with all that he has to put up with in this house, he's a great kid. It's easy to neglect your child who doesn't need as much help and attention to do well in life, so I am trying to make sure I don't do this. He is becoming a great little guy and will be baptized in just 2 months.

And as for me, I am taking things one day at a time. I started watching the show "Parenthood" on Netflix because so many people have told me I needed to. Well, it has brought back all sorts of emotions for me, seeing these great parents deal with their child's Asperger's diagnosis and then try to figure out what to do from there. I've definitely been there and felt what they are feeling. And watching them go through this process has made me feel like I really need to work on healing the pain that still hides deep down inside me from all that I have been through. I guess it's easier to just hide those feelings away and hope they can stay hidden. But what I need to do is face all of them, and rid myself of them, and replace them with better feelings and hopes so that I can feel truly at peace. So I, too, will get there, will get where I need to be as a mom, as long as I continue to trust in God.

My Middle Child, and the Time CPS and the Police Came to My Door

Everyone's heard of the middle child syndrome. The child who is forgotten, neglected, not given much attention because he or she happened to be born in the middle. I was the oldest, so I can't really relate. But now that I have my own kids, I am starting to see how the middle child really can be neglected. Especially in my situation, when my oldest is on the autism spectrum, and my youngest has the cleft palate and sees numerous doctors on a regular basis. So for even more reasons, I feel like Blake, my middle child, can suffer from this middle child syndrome, and I am trying hard not to let that happen.

Blake, as I have shared before, was born with mastocytosis, and had a scary first couple of years. But once we got through that, and he no longer had symptoms, he developed normally and even above average, has succeeded in school, and for the most part, I don't have to worry about him, other than the usual stubborn disobedience that most children display. Not having to worry about him though means I might often forget that he has his own concerns and problems, and I have to make time to listen to him so I can help him with those. However, there is one thing that still sets him apart, and that is his spots, that are starting to fade as the years go by. There is one particular instance where these spots got him into trouble.

Before Blake entered kindergarten, I made sure to note on the health forms that he had mastocytosis, and described the spots as best I could. I didn't want teachers to worry about them, because some actually look like bruises, especially the ones on his arms and legs that are often showing. The last thing I would want is for his teacher to think I am physically abusing him! So his first year in school went just fine, until the very last day, when they were having a party, and some moms were volunteering in the classroom. After school, I got a call from his teacher, and she told me that to be on the lookout, that I might have been reported by one of the parents. I immediately thought they must have called because they thought his spots looked like bruises! My worst fears were coming true! His teacher said she tried to convince the moms otherwise, but they didn't seem to care.

Not even 2 hours after school, I get a knock at my door. It's a police officer, with another man who introduced himself as a Child Protective Services agent. They asked to come inside, and of course I did so. Julianna was upstairs working with her ABA therapist. I suddenly felt very vulnerable, and scared. I had no idea what they were going to ask or accuse me of. Luckily I had cleaned up the house that morning, and gotten dressed! The police officer told me that Blake was reported to having been abused in some way. I went into defense mode, explaining everything about the symptoms of mastocytosis, showed him some spots on Blake's arms and legs and stomach, told him I had all of this documented with the school and his teacher was aware.

After sharing my whole story, he then took out his phone and looked up mastocytosis. He actually wanted to make sure I wasn't lying! Did he really think I could make up a whole medical condition?? Of course he found it to be true. And then he told me why they were really over there: the parent who reporting him said he thought Blake had rope burns on his neck. ROPE BURNS? I then looked at his neck, and realized what they were talking about. Just a few days before this, Blake had fallen down into a rose bush and scraped the side of his neck. It wasn't too bad, but we put some bandaids on it, and it was healed enough to remove the bandaids for the last day of school. Oh how I wish I had not taken off those bandaids. After explaining this to the police officer, he sided with my story, and left the house.

Now it was the CPS officer's turn, and he went through his long list of questions regarding parenting, because he had to make sure I really wasn't abusing my child. And because Julianna was upstairs, he had to go take a look at her as well to make sure she was okay. I told him she was getting therapy, so he asked a little bit more about her diagnosis, and then told me he used to work for the regional center. Long story short, we talked for a good while, and he was able to give me a list of some great resources that usually aren't available to parents. He apologized for having to go to such extreme measures, but they do have to take every call seriously. Because of Blake's health condition, he decided to make a note on his records of the symptoms, just in case anyone ever did call about child abuse in the future. So I guess it was a good thing the police and CPS came, because now all they would do is look at Blake's chart and see that the supposed "abuse" was really from a health condition. And I got some new information to help Julianna.

The funniest part of this whole story is that the entire time I was inside talking to the officers, there were many policemen hiding in the perimeter of our house. My neighbor told me this later that day and were very worried about us. This wasn't the first time the police had come to our home for Blake. When he was 2, he locked himself in my bedroom and I could not get it open. I finally had no choice but to call 911, and they broke down the door to get in.

To say my life is crazy is an understatement. But our crazy has become normal to me, and I wouldn't have it any other way. I love my middle child Blake so much, spots and all. Being a parent is a wonderful thing.

Blake's first visit to the dermatologist, and first two years

I don't specifically remember how I felt as I drove the 30 minutes with my newborn baby, Blake, and my toddler, Julianna, to the dermatologist, though I'm sure I was very hopeful. In just a few weeks I had been through so much uncertainty with him. It's always a little scary when your pediatricians can't solve a medical problem and have done all they can do to help. I just felt grateful that were were able to get in when we did, instead of waiting 4 months. I really don't think I could have gone any longer with his strange symptoms.

Dr. Barrio was our dermatologist, and after taking one look at Blake, she said, "He has mastocytosis."

I had nothing to relate this to, nothing in my Mom-knowledge of medical terms rang any bells for me when she said this word. So all I could do was listen to her describe, in as simple terms as possible, what mastocytosis was. And here is how I describe it to people when they ask:

Everyone has mast cells in their blood, which contain histamines, similar to what cause allergies. Blake has an abundance of mast cells in his blood that have to be released, and the way they do that is through the skin. So when too many mast cells collect in a certain area, it causes him to get a spot, some big, some small, some light or dark. And another way they are released is when he starts to flush, or turn red all over his body. The blisters are another side effect that form on some of the spots as well.

So now I knew why he was turning red--it was called flushing. And now I knew why he kept getting spots and blisters, mostly on the crown of his head, and his torso/abdomen. But I wanted to know if this was a lifelong thing that he would have to deal with! Dr. Barrio assured me that mastocytosis is a childhood disease, and usually the flushing and blistering symptoms go away by age 2, but the spots remain and continue to fade until he reaches adolesence.

I felt very relieved, to finally know what was going on with him, and that it would not affect him during his entire life. I just had to get through two years or so of difficult symptoms...two years...can I do this?

But Dr. Barrio wasn't done yet. She informed me that his case seemed a little on the extreme side, and that while flushing, some babies could go into anaphylactic shock and possible die. So I was prescribed an epi-pen, and educated on the symptoms of shock. And when he reached 4 months old, he would begin taking antihistamines, and a medication to soothe his stomach pain, which would also be a symptom. Blake also had to get some blood tests done to rule out systemic mastocytosis, which would me he would have the disease in other areas of his body, a type of cancer that would have to be treated. And she also stressed to me that it was a very good thing Blake was seen so early on...she wanted to monitor him closely and even gave me her cell phone number to call with any concerns I had. This was getting serious...I had an epi-pen??? He could have a type of cancer?? And my doctor's direct cell phone number? But I did feel a little better knowing she would now be aware of Blake and that she would be there to talk at a moment's notice.

I also began to keep track of how many times he flushed during the day, and when he got blisters. And every time he flushed, I knew it, because he would wiggle his little body and cry and seem so uncomfortable. I felt so bad for him, that he had this going on inside his body and all I could do was watch it happen, and hold him and soothe him as best I could. Not to mention, when he got a little bigger, those spots that continued to develop began to itch him as well.

You'll be happy to know that his mastocytosis is not systemic, it only affects his skin. And I never had to use the epi-pen or see him go into shock, but I sure did watch him every time he flushed to make sure. He was my baby that I carried everywhere--he never wanted me to put him down, even when he napped. And to this day, he's still my biggest cuddler.

And I did survive the first two years, taking him in to the dermatologist multiple times a month to be checked by Dr. Barrio. By the time he was two, I was told that he wouldn't need to be seen anymore, because his flushing and blistering disappeared. I definitely had divine help during those two years, because Blake's condition wasn't the only thing affecting our family. His first year of life I was trying to figure out what was going on with my girl, Julianna, who I will begin to write about next...I think I'm ready to dive into that now.

 

 

Blake's Birth Story

Now that you know all about Nathan and his cleft palate, I am going to move on to Blake, my second child, who is currently 7 years old.

Blake was born on November 16 2006, three days early. I was 24 years old, we had just moved into a brand new townhome a few weeks prior, and I was starting to have my suspicions about Julianna, though I couldn't put my finger on it yet. My husband was in the middle of his first year teaching high school English. Julianna was almost 3 years old. I remember laying on the bed with Julianna, just half an hour after Joel left for work. We were enjoying our cuddling, and then it happened--my water broke. Such a strange sensation. So I called Joel, told him to come back home, my mom, who was then living only 1 hour away, arrived to stay with Julianna, and off we went to the hospital.

The labor and delivery went beautifully--no complications at all. They tried to give me pitocin to induce labor more in the beginning, because as it turned out, my water didn't completely break, just part of it, somehow. But the pitocin was causing Blake to have an irregular heartbeat, so that was stopped. Instead they broke my water completely, and within a few hours, he was born. Another beautiful redhead. And a big one--8 lbs 14 oz. He looked SOLID. Like a little body builder with broad shoulders and a big torso--just a solid little boy, especially when we looked at him next to the other babies in the hospital. He nursed very well (something I will never take for granted after having a cleft palate baby) and everything looked great!

Except for those two little spots on his abdomen...what were those, we wondered? They looked like birthmarks, but were a little big, we thought. We weren't that concerned, but just in case, we asked the doctor what he thought. After taking a look, he said, it could just be a mark from the trauma of delivery, or maybe the cord was wrapped around him at one point, or maybe they were just birthmarks. He wasn't worried at all, so we didn't worry, either. We went home from the hospital with our newest addition to the family, excited for Julianna to have a brother.

It wasn't long before we actually began to worry. Within the first few days of being home, we began to notice strange symptoms. First, it was how red and splotchy he looked, most of the time, almost like he had a sunburn in different places. I remember nursing him one morning, and just looking at his sweet face, and seeing the skin right around his nose and under his eyes slowly turn red, and little by little, it would spread over his entire face, and pretty soon, his entire body was red. And while this was happening, he was squirming, and uncomfortable. I called the doctor, and they brushed it off as a newborn thing and said not to worry. But it kept happening, a few times a day, and I could tell he didn't like it.

Then in the first week or so, those two spots on his abdomen began to form blisters. Raised blisters that did not look good at all. And it seemed like there were other little spots, near the crown of his head, and on his back near his shoulder, that began to surface. So we took him right in to the pediatrician. They looked at the blisters and thought it must be impetigo, and prescribed some cream. Well, we tried that for a week, and that didn't work at all. He continued to blister, and to turn red all over his body. When we took him back to the pediatrician, they didn't know what to tell us, other than to send Blake to a dermatologist. We were finally going to get some answers.

After we got authorization for the dermatologist, we called to make an appointment. Unfortunately, they were booked for the next 4 months. We pleaded with them to see our baby--something was really wrong. We described the symptoms and how scared we were, but the best they could do was put us on a cancellation list. Luckily, the very next day, we got a call, and they asked if we could come in tomorrow. Of course we could! So we were on our way to get the answers we had been looking for. Blake was just 3 weeks old...

Typical conversations in our family, maybe not typical for you

*For future reference, I will be using just my kids' first names on my blog. I had planned to use nicknames to protect their privacy, but I think first names will be easier.

Today on the way to school, Blake asked:

"Mom, you know how Julianna has to say 'I love you' all the time, and has to get an answer or she will keep saying it and then get mad?"

Me, smiling to myself, thinking about how many times she says 'I love you' to each of us every single day. Well, not Nathan, yet, but I'm sure once he starts talking he'll get the same thing.

"Yes," I replied. "Did she just do it again?" Looking at Julianna in the rearview mirror, "Julianna, you can't say 'I love you' to Blake anymore today, okay?" Julianna quietly responded yes, but doesn't sound very convincing. She has to say 'I love you' all day...it's her thing right now. It's been her thing for a quite a while. Those of you with special needs kids might understand this a little better.

Blake continued, "Well, how come when I don't answer, after she says it over and over waiting for an answer, she hits me? But when you don't answer, she doesn't hit you? It's not FAIR!"

He made a good point. "Well, because I'm her mom, and she can't hit her mom!" Looking at Julianna in the rearview mirror again, "Julianna, don't hit Blake when he doesn't answer you, okay? Be nice to your brother. And don't say 'I love you' so much!" Again, Julianna quietly responded yes, not sounding very convincing at all. Then Blake chimes in, "Yeah, Julianna, I'm exhausted!" First time he'd ever used that word. And he used it in response to his sister's words of love. Only in my house, I tell you.

The irony in this situation is hilarious. Here's a sister, telling a brother, that she loves him. What a kind thing to say, right? Well, imagine being that brother, who hears his sister say this to her, on average, about every 5 minutes. Saying "I love you" would get old pretty fast. But to make it worse, if he doesn't reply with an "I love you, too" or "thank you" back, she will keep saying she loves him, over and over, until she's so mad that she hits him. She hits him because she wants to make sure, every five minutes, that he still loves her, too.

We've explained the silliness of this scenario many times to Julianna. "Why do you say 'I love you' over and over, until the 'I love you' sounds like an angry one, and then you hit him?" Really, you'd have to hear me saying this to hear the humor. Her "I love yous" go from happy to angry to aggressive. The great thing is, she understands this is funny. She knows that it doesn't make sense to hit someone after you tell that person you love him. When I imitate her, she laughs, and says, "I don't know why I do that, Mommy."

Welcome to my life. Trying to decipher why my daughter does certain things. Why she has to repeat specific phrases, over and over again, and why it makes her mad when it doesn't always go the same way. Trying to discover a way to help her overcome those things. Failing miserably, over and over again. But never giving up. And sometimes, accepting those things as just part of who she is. If she wants to say "I love you" all day, then I'll take it. At least it's not something horrible that she's repeating. We know she loves us, a lot. What could be better than that.

"Behind My Smile"

In most every conversation, with a stranger or a friend,
I am asked the same old question, time and time again:
"How are you doing?"; as commonplace as simply saying "hi"
But the answer doesn't always speak the truth, rather a lie.
Instead of sharing how I feel, and talking for a while,
I hide my feelings, worries, fears, deep down behind my smile.

"I'm fine," I say, not really thinking what is going on.
The reply, so automatic, just rolls right off the tongue.
And just as quickly, my next thought, is always, "How are you?"
And the other person quickly states that, "I am just fine, too."
Who are we kidding? We both know that today we've walked a mile.
Why can't I just share honestly what is behind my smile?

Well, here it is, here's what I'd say, if we both had the time:
My day began with hopes, with goals, with reason and with rhyme.
But then my daughter, on the spectrum, threw a major fit
About her clothes to wear to school; she said they "didn't fit."
And after solving that one, I prepared myself once more
To brush her tangly, redheaded mane, like many times before.

But then my son, intent on interrupting, came to say
He didn't want to make his lunch for school, nope, not today.
And so I told him firmly, YOU WILL MAKE YOUR LUNCH, that's right
Or you will be too hungry in your class, DON'T PICK A FIGHT!
Instead of kind obedience, I hear him angrily
Throw his shoes, his backpack, and then an evil glance at me.

Well, that would be enough to wipe a smile off my face,
But that does not include my little baby's cries and rage.
You see, every morning, this poor babe is placed inside
His playpen, screaming desperately, for someone to confide.
His cries are like the background noise that linger through the air
As I get my children off to school and FINALLY out of my hair.

Some might say this sounds just like an ordinary start
To any young mom's day; so why pick it all apart?
But trust me, I'm not finished yet, I've only just begun
To tell you why I'm not just "fine," there's really more than one;
One answer, yes, but not one feeling, or frustration, fear, or worry
If you can listen a little longer, I will try to hurry.

With my daughter on the spectrum, every day is up and down.
Every feeling that surrounds her makes her feel like she will drown.
Every new experience can send her into a panicked state
Every change or cancellation can make her most irate
But every challenge conquered gives her confidence and glee
And shows me that autism spectrum is not a disability.

With my oldest son, his challenges are of a different kind
His are upon his body and do not affect his mind.
Mastocytosis took its toll on him in infancy
And caused him to have spots upon his body, most you can't see.
But though most people do not know, he knows, and he believes
That his spots make him special; this is what I have perceived.

And my baby boy, he had my heart just hours after his birth
When I discovered that his trials would be many on this earth.
A bilateral cleft palate, bringing surgery and more
Trouble gaining weight, and feeding, and doctor visits galore.
Then came news of the duplication of Chromosome 22
But this just proved I've only seen a small part of what he can do.

And so you see, three children that I'm proud to call my own
Have challenges to face, which often make me feel alone.
Alone because no one can understand just what I face;
Alone because I often feel that I don't have a place.
So next time, when you ask me how I'm doing, you will know
That this is what's behind my smile that always seems to show.

I smile because I'm happy, yes, I'm trying hard to be.
I smile because I'm strong despite all the adversity.
I smile because though things are hard, I'm really not alone.
I smile because I know that in the end, my heavenly home
Will know my story, know my worries, and take them all from me
If I can just endure, and help my children be the best that they can be.

When a sibling notices differences

This is something that has been on my mind a lot lately. J-babe, who is 10, is on the autism spectrum, and displays behaviors (mostly at home only) that are not normal, but allow her to release her pent-up frustration and sensory overload, especially from a long day at school. Big B, who is 7, is not only noticing the differences, but now asking why she does certain things. And even asking about other kids or adults he sees that are different. He's connecting the dots now. I knew he would soon enough, but I never felt like it was important to outright explain anything to him. I never thought I had to sit him down and say, "Let me tell you about your sister." I wanted him to figure it out on his own, mostly because I didn't want him to view his older sister any differently than any other kid.

But now that he is asking more questions, I find myself not always prepared to answer them. For example, he noticed that a child with Down Syndrome looked different and couldn't talk normally. So he asked why this child could not talk like the other kids. I told him, in the simplest terms possible, about DNA, and chromosomes, and how kids with Down Syndrome have an extra chromosome, and how this affects their ability to talk and learn, and that they were born this way. He must have understood this, and then said something too smart for a 7-year-old: "Oh, so is that what J-babe has, too?"

Well, I had to think about how to respond to that one. "No, she doesn't have Down Syndrome. She has...other things that make her do what she does." But really, how do you explain autistic traits or sensory processing to a 7-year-old? He wants to understand his older sister, his sister that he loves to play with, most of the time, until she starts tantruming, or perseverating on a question with him, or pestering and poking him for no reason at all. "She's just different than you, that's all. Her body doesn't work the same as yours. So she has to do things to make her body feel better." It was a good enough answer for now.

But what breaks my heart is hearing HIM ask her the questions, which is a new thing. Just yesterday, after a recent playdate with friends, he asked her, "J-babe, how come you don't talk to your friends when they're here?" J-babe was quick to retort, "I talk to my friends!" But Big B persisted, "No, you don't talk very much." J-babe didn't know how to answer this one. I was overhearing, and actually wondering the answer to that one, too. If Big B had asked me, I wouldn't know what to say. I don't know why, when there are more than 3 kids at our house, she becomes almost silent, and likes to follow the kids around. But you let her play, one on one, with a friend, in a closed room, and I can hear her talking away.

Or another one that Big B has asked many times over the years: "Why does J-babe have so many people to help her? Like at school, why does she have her aide, and I don't?" Again, the same answer, she's just different than you. And she needs a little more help than you do. This usually leads to him boasting, "Well, I don't need extra help! I can do things by myself!"

The best thing about these two is that they are BOTH different, in their own ways. Big B has mastocytocis, a blood disorder that caused him to have spots on his body, mostly his torso, which will fade until adolescence. These make him very different as well, but only on the outside. J-babe's differences make her behave and experience things differently. She's even asked him why he has those spots, and his answer always is, "Because they make me special!" Maybe Big B has to learn why J-babe's differences make her special, too, and I'm sure he will.

As the years go on, and my little boy learns more about the world around him, and about people surrounding him, he will continue ask more questions, more in-depth ones, that will allow me to share more with him about what makes his big sister different. I just hope that I can continue to answer in a way that will not take away from the view he holds of his big sister. I want him to see her as an equal, as someone who can do anything he can, and if not, can at least learn how to. And as long as J-babe has a brother like Big B, I'm sure she can do anything. He helps her reach new heights and will take her places that I probably never could, because no matter what kind of children you have, the bond between siblings is still the strongest bond.

Big B: my middle red

Big B, my middle red, was born on November 16, 2006, at a very healthy 8 lbs 14 oz. He looked gigantic next to the other babies in the nursery, and was a handsome little redhead. We noticed right away that he had two small spots on his stomach. When we mentioned it to the doctors and nurses, they thought the spots were birthmarks. So we took him home, excited to have a new baby boy.

The first few days proved to be very scary, as we watched our baby boy develop strange symptoms. He began to flush, out of nowhere, on his entire body. It would start right around his nose, and spread slowly until his whole body was red as a tomato, and when he did this, he would squirm and cry and seem like he was in lots of pain. Soon after that we noticed blisters on the spots. This was in just the first 3 days after bringing him home. We brought him in to the pediatrician, and they thought it was inpetigo. When the cream didn't work, they gave us a referal for the dermatologist.

When we called the dermatologist, they said B couldn't be seen for 4 months. We described his symptoms and how worried we were, and the best they could do was put him on the cancellation list. So we prayed, and our prayers were answered because the next day, they called back and asked if we could come the next day. And when we brought him in, the dermatologist knew right away what he had: mastocytosis, a rare blood disorder where the mast cells contain too many histamines that have to be released into the skin and cause spots, flushing, and blistering. We were reassured that his spots, thought they would continue to spread over his body, would slowly fade until he reaches adolescence.

We love having Big B in our family and hope to touch the lives of others who have children with mastocytosis as we share our stories about him.