Quick note from Miggy here…Hi everyone! I hope you like the new look! Personally I love it. We’re still working out a few kinks, but hopefully everything will be smooth as butta soon enough. Thanks lovely readers for your support.
I am so honored to be a guest on your blog, Miggy. I have been inspired by the special needs spotlights and admire all those who have special children. My name is Kera, and my husband Joel and our three kids live in Southern California. Joel is a high school English teacher and I stay home with my kids, the best job in the world! Julianna is 9, and has varying needs on the autism spectrum, which include sensory processing disorder, anxiety, speech delay, gross and fine motor delay, mild Tourrette’s, stereotypic movement disorder, to name a few. Blake is 6 and was born with mastocytosis, a rare blood disorder. And Nathan is 10 months, born with a bilateral cleft palate and Chromosome 22 microduplication. The best part is they all have red hair, and tempers to match! We certainly get a lot of attention, everywhere we go, for more reasons than one!
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Miggy: Kera, thank
you so much for sharing your family with us today. So wow–you’ve got 3
children who all have varying forms of special needs! Like you said in your
email, you’ve got your hands full. Can
you give us a glimpse of what it has been like to discover each of your child’s
special needs and how you’ve coped with the realization each time?
you so much for sharing your family with us today. So wow–you’ve got 3
children who all have varying forms of special needs! Like you said in your
email, you’ve got your hands full. Can
you give us a glimpse of what it has been like to discover each of your child’s
special needs and how you’ve coped with the realization each time?
Kera:
I’ll start with Julianna, my oldest. She was born on her due date, Dec.
6th. The first words I heard
from the doctor were, “She’s a redhead!” She was beautiful, and was placed on
oxygen for about 9 hours due to meconium at birth. I began to notice little things when she was a
baby—she liked to wiggle her feet and hands a lot, and stiffened her legs
spontaneously. Then she began shaking
her head and flapping her arms. She
didn’t smile as often as she should but started talking at 10 months. I tried not to worry, but when she didn’t
crawl until almost a year old, and wasn’t walking by 18 months, her
pediatrician referred us for physical therapy and early intervention services. Also, a neighbor who was a speech therapist
knocked on my door one day and said, “I think your child has autism.” I had a good cry with her, and then a good cry
as I held my little baby girl, and then did tons of research. In my heart I didn’t think she had autism, and
over the years we have discovered that she just has traits, not full autism. But this was the beginning of trying to find
answers for her. I wouldn’t say there
was one single discovery, but many as I have taken her to different doctors and
had her evaluated by different specialists. It has been a journey, and continues to be
one. I think time has made things
easier, though I still have many moments where I feel like I just can’t cope
with the reality of her needs and wonder how far she will go.
I’ll start with Julianna, my oldest. She was born on her due date, Dec.
6th. The first words I heard
from the doctor were, “She’s a redhead!” She was beautiful, and was placed on
oxygen for about 9 hours due to meconium at birth. I began to notice little things when she was a
baby—she liked to wiggle her feet and hands a lot, and stiffened her legs
spontaneously. Then she began shaking
her head and flapping her arms. She
didn’t smile as often as she should but started talking at 10 months. I tried not to worry, but when she didn’t
crawl until almost a year old, and wasn’t walking by 18 months, her
pediatrician referred us for physical therapy and early intervention services. Also, a neighbor who was a speech therapist
knocked on my door one day and said, “I think your child has autism.” I had a good cry with her, and then a good cry
as I held my little baby girl, and then did tons of research. In my heart I didn’t think she had autism, and
over the years we have discovered that she just has traits, not full autism. But this was the beginning of trying to find
answers for her. I wouldn’t say there
was one single discovery, but many as I have taken her to different doctors and
had her evaluated by different specialists. It has been a journey, and continues to be
one. I think time has made things
easier, though I still have many moments where I feel like I just can’t cope
with the reality of her needs and wonder how far she will go.
Blake, my second child, was born at a
healthy 8 pounds 15 ounces, and again the doctor announced another readhead! He was born almost 3 years after Julianna,
November 16th. We noticed at birth that he had two small spots on his abdomen
that looked like birthmarks. The doctors
didn’t think anything of it, so we took him home, happy to have a new baby boy. It
wasn’t a few days before the strange symptoms appeared… his entire body would
flush and turn red as a tomato, and he would scream and wriggle and cry like he
was in pain, a few times a day. He then started to blister on the spots and
some others that we found on his head. We
took him in to the pediatrician right away and they thought it was impetigo,
and prescribed some cream. When that didn’t work, and the symptoms persisted,
they referred us to a dermatologist. Fortunately we were able to get him in the
next day instead of 4 months later, which proved to be a blessing after we
found out his diagnosis. The
dermatologist took one look at him and said, he has mastocytosis,
(http://www.mastokids.org/) a disorder where there are too many mast cells in
the blood which contain histamines that release into the skin and cause spots,
flushing, and blisters. They prescribed
an epi-pen because these flushing episodes can sometimes cause a baby to go
into anaphylactic shock and possibly die! They even said that we were so lucky he was
seen that day, because his particular case was on the extreme side, and there
was a possibility that he could have had serious complications had we waited
just 4 months. He was given an
antihistamine to control his levels. His
symptoms persisted until he was about 2 years old, where he continued to
develop more spots, mostly on his torso, but the spots will fade and disappear
by the time he reaches adolescence, we are told. Needless to say his first two years were
filled with scary moments and lots of doctor visits.
healthy 8 pounds 15 ounces, and again the doctor announced another readhead! He was born almost 3 years after Julianna,
November 16th. We noticed at birth that he had two small spots on his abdomen
that looked like birthmarks. The doctors
didn’t think anything of it, so we took him home, happy to have a new baby boy. It
wasn’t a few days before the strange symptoms appeared… his entire body would
flush and turn red as a tomato, and he would scream and wriggle and cry like he
was in pain, a few times a day. He then started to blister on the spots and
some others that we found on his head. We
took him in to the pediatrician right away and they thought it was impetigo,
and prescribed some cream. When that didn’t work, and the symptoms persisted,
they referred us to a dermatologist. Fortunately we were able to get him in the
next day instead of 4 months later, which proved to be a blessing after we
found out his diagnosis. The
dermatologist took one look at him and said, he has mastocytosis,
(http://www.mastokids.org/) a disorder where there are too many mast cells in
the blood which contain histamines that release into the skin and cause spots,
flushing, and blisters. They prescribed
an epi-pen because these flushing episodes can sometimes cause a baby to go
into anaphylactic shock and possibly die! They even said that we were so lucky he was
seen that day, because his particular case was on the extreme side, and there
was a possibility that he could have had serious complications had we waited
just 4 months. He was given an
antihistamine to control his levels. His
symptoms persisted until he was about 2 years old, where he continued to
develop more spots, mostly on his torso, but the spots will fade and disappear
by the time he reaches adolescence, we are told. Needless to say his first two years were
filled with scary moments and lots of doctor visits.
Nathan, my little baby boy, was born on
December 5th, one day before
his big sister’s 9th birthday, and one ounce heavier than his big
brother, and again, another redhead! When
I tried to nurse him, he didn’t seem to want to latch on and was making a
strange clicking sound. The nurses
noticed he was having a lot of mucus discharge from his nose and mouth, so they
went to suction him, and when our baby didn’t come back after an hour, I began
to get nervous. Soon we saw three nurses
come into the room and tell us that Nathan had a bilateral cleft palate (http://www.cleftline.org/parents-individuals/). My heart sank! We had prayed so hard to have a healthy,
normal baby, and waited a good while before we had another one! We were soon visited by many doctors and
specialists. In the hospital a whole
team worked with me to see if we could get him to nurse, but were unsuccessful.
So they sent me home with a hospital
grade pump, special Mead Johnson bottles, and syringes, tubes, and pacifiers. My number one concern was: how is my baby
going to eat and gain weight? His first few
months proved very challenging as I learned how to feed him and decided to pump
exclusively as well, and took him to see many doctors and specialists. He may need speech therapy, special
dental/orthodontic care, and continues to be seen by many specialists each
month. He had surgery to repair the palate almost two months ago (which I will
talk more about) and is improving.
December 5th, one day before
his big sister’s 9th birthday, and one ounce heavier than his big
brother, and again, another redhead! When
I tried to nurse him, he didn’t seem to want to latch on and was making a
strange clicking sound. The nurses
noticed he was having a lot of mucus discharge from his nose and mouth, so they
went to suction him, and when our baby didn’t come back after an hour, I began
to get nervous. Soon we saw three nurses
come into the room and tell us that Nathan had a bilateral cleft palate (http://www.cleftline.org/parents-individuals/). My heart sank! We had prayed so hard to have a healthy,
normal baby, and waited a good while before we had another one! We were soon visited by many doctors and
specialists. In the hospital a whole
team worked with me to see if we could get him to nurse, but were unsuccessful.
So they sent me home with a hospital
grade pump, special Mead Johnson bottles, and syringes, tubes, and pacifiers. My number one concern was: how is my baby
going to eat and gain weight? His first few
months proved very challenging as I learned how to feed him and decided to pump
exclusively as well, and took him to see many doctors and specialists. He may need speech therapy, special
dental/orthodontic care, and continues to be seen by many specialists each
month. He had surgery to repair the palate almost two months ago (which I will
talk more about) and is improving.
Miggy: I’ve had
to admit that from time to time I’ve worried about having additional children
with different special needs. Of course
I know that in the long run everything would be fine and love would prevail,
but it’s still a worry. What would you
say to a mother who discovers she too will have more than one child with
special needs?
to admit that from time to time I’ve worried about having additional children
with different special needs. Of course
I know that in the long run everything would be fine and love would prevail,
but it’s still a worry. What would you
say to a mother who discovers she too will have more than one child with
special needs?
Kera:
To be honest, it is
really, really hard! I don’t think
anyone can understand how hard it is and this causes me to feel alone quite
often, but thanks to a wonderful husband, family, and friends, I always have a
listening ear when I am struggling. With
my oldest, I went through a denial period when she was 2-3 years old. I didn’t want to think anything was wrong with
her. I even terminated services that I
already secured through the local regional center because I wanted to believe
she was fine. A year later, when I
realized she really wasn’t okay, I wanted that help back. (It took me 4 years to get it. Every
service I had tried to get for her has been a battle to the end, but she’s my
daughter, and I will do anything to help her.) I was in the end of that denial period with
Julianna when Blake was born, dealing with his flushing and blistering which
was very challenging and draining. Once
Blake’s symptoms improved two years later, I was worn out! So we waited a while to discover if/when we
were supposed to have another child. We
wanted to be at the right place. Exactly
9 years to the day after I found out I was expecting Julianna, I discovered I
was pregnant with Nathan. We prayed and prayed that this baby would be okay. So when Nathan was born, I was floored to find
out he had something, too. I thought
there was no way we would be given another special child. What really helped me cope was that Julianna’s
services through the regional center and school were all in place. I didn’t have to worry much about her
anymore—I had finally gotten her everything she needed, literally weeks before
I gave birth to Nathan, and Blake was in school all day. So when Nathan’s doctor visits piled up, and I
had to figure out how to feed him, I wasn’t as stressed, because my kids were
older and in a better place. I knew I
could handle this new little baby and give him the care he needed. I truly feel like we have been guided in every
decision and challenge we have had with our kids because we have been prayerful
and faithful. And interestingly, Nathan
is almost an answer to prayer concerning Julianna, because of his Chromosome 22
duplication. We have been told that this duplication can cause different
symptoms in another sibling of the same family, and we are in the process of
having Julianna tested for the same duplication. Nathan could be our answer to where Julianna’s
issues come from! If this is true, any
more children we conceive would have a 50% chance of inheriting the same
duplication, though it does not always cause any symptoms. We will find out
soon. Geneticists are fascinated by our family.
To be honest, it is
really, really hard! I don’t think
anyone can understand how hard it is and this causes me to feel alone quite
often, but thanks to a wonderful husband, family, and friends, I always have a
listening ear when I am struggling. With
my oldest, I went through a denial period when she was 2-3 years old. I didn’t want to think anything was wrong with
her. I even terminated services that I
already secured through the local regional center because I wanted to believe
she was fine. A year later, when I
realized she really wasn’t okay, I wanted that help back. (It took me 4 years to get it. Every
service I had tried to get for her has been a battle to the end, but she’s my
daughter, and I will do anything to help her.) I was in the end of that denial period with
Julianna when Blake was born, dealing with his flushing and blistering which
was very challenging and draining. Once
Blake’s symptoms improved two years later, I was worn out! So we waited a while to discover if/when we
were supposed to have another child. We
wanted to be at the right place. Exactly
9 years to the day after I found out I was expecting Julianna, I discovered I
was pregnant with Nathan. We prayed and prayed that this baby would be okay. So when Nathan was born, I was floored to find
out he had something, too. I thought
there was no way we would be given another special child. What really helped me cope was that Julianna’s
services through the regional center and school were all in place. I didn’t have to worry much about her
anymore—I had finally gotten her everything she needed, literally weeks before
I gave birth to Nathan, and Blake was in school all day. So when Nathan’s doctor visits piled up, and I
had to figure out how to feed him, I wasn’t as stressed, because my kids were
older and in a better place. I knew I
could handle this new little baby and give him the care he needed. I truly feel like we have been guided in every
decision and challenge we have had with our kids because we have been prayerful
and faithful. And interestingly, Nathan
is almost an answer to prayer concerning Julianna, because of his Chromosome 22
duplication. We have been told that this duplication can cause different
symptoms in another sibling of the same family, and we are in the process of
having Julianna tested for the same duplication. Nathan could be our answer to where Julianna’s
issues come from! If this is true, any
more children we conceive would have a 50% chance of inheriting the same
duplication, though it does not always cause any symptoms. We will find out
soon. Geneticists are fascinated by our family.
Miggy: How do
your children’s needs affect your day-to-day life?
your children’s needs affect your day-to-day life?
Kera:
With Julianna, she
needs help dressing, bathing, and grooming, and little things can set her off
into a major tantrum. She hates change
and still struggles socially. But I
treat her just like any other child—she is in a regular classroom with a 1:1 aide
and doing great. I have the same
expectations for her as I do with her brother. She just needs a little extra help in some
areas, and I am always working on improving those areas for her. Blake’s needs are not as extreme as they were
when he was a baby. His spots are still
there, but I don’t even notice it anymore! Nathan’s needs were challenging as a younger
baby, as I learned to feed him using a special bottle and have been monitored
closely by doctors on his weight and development. Sometimes I am gone the entire school day to
take him to specialists. It’s amazing
how many doctors work with this little guy! And I thought my daughter had a lot! Like all mothers, my children seem to run my
life, but that’s the sacrifice we make to care for them. It’s draining and
frustrating at times, but I don’t give up!
With Julianna, she
needs help dressing, bathing, and grooming, and little things can set her off
into a major tantrum. She hates change
and still struggles socially. But I
treat her just like any other child—she is in a regular classroom with a 1:1 aide
and doing great. I have the same
expectations for her as I do with her brother. She just needs a little extra help in some
areas, and I am always working on improving those areas for her. Blake’s needs are not as extreme as they were
when he was a baby. His spots are still
there, but I don’t even notice it anymore! Nathan’s needs were challenging as a younger
baby, as I learned to feed him using a special bottle and have been monitored
closely by doctors on his weight and development. Sometimes I am gone the entire school day to
take him to specialists. It’s amazing
how many doctors work with this little guy! And I thought my daughter had a lot! Like all mothers, my children seem to run my
life, but that’s the sacrifice we make to care for them. It’s draining and
frustrating at times, but I don’t give up!
Miggy: What are
the biggest worries you face for your children?
the biggest worries you face for your children?
Kera:
Oh, you had to go and
ask that, did you?? Well, who doesn’t
worry about their kids, special needs or not? With Julianna, of course I worry what her
potential is, and am I doing enough to help her reach her potential? Or, am I doing too much? Will she ever
marry and have children, and be able to live on her own (she already talks
about this and believes she will). But
will she actually do this? This is the
biggest thing I worry about, because in her little heart, she thinks she can
and will do everything like a normal child and someday adult, but when I watch
her, I know that there’s just something missing that makes me wonder if she
really can achieve those things. So then
I go back to the, am I doing enough? It’s
a vicious cycle. All I can do is take
one day at a time, teach her one new skill at a time, and continue checking off
that list until I am confident she can. And
of course I worry about what the middle/high school years will be like for her.
Will she have friends who will watch out
for her and really show they care, because she
cares so much for others? I just want
people to treat her like everyone else and for her to feel loved and accepted.
Oh, you had to go and
ask that, did you?? Well, who doesn’t
worry about their kids, special needs or not? With Julianna, of course I worry what her
potential is, and am I doing enough to help her reach her potential? Or, am I doing too much? Will she ever
marry and have children, and be able to live on her own (she already talks
about this and believes she will). But
will she actually do this? This is the
biggest thing I worry about, because in her little heart, she thinks she can
and will do everything like a normal child and someday adult, but when I watch
her, I know that there’s just something missing that makes me wonder if she
really can achieve those things. So then
I go back to the, am I doing enough? It’s
a vicious cycle. All I can do is take
one day at a time, teach her one new skill at a time, and continue checking off
that list until I am confident she can. And
of course I worry about what the middle/high school years will be like for her.
Will she have friends who will watch out
for her and really show they care, because she
cares so much for others? I just want
people to treat her like everyone else and for her to feel loved and accepted.
With Blake, my only worry is that he will
be made fun of because of his “spots.” You really can’t see them unless he’s
swimming, and even then he wears a shirt to protect him from the sun. Because
they don’t fade until adolescence, there could be some challenging situations
ahead for him. But since he was little,
and started asking what the spots were, I always told him, those spots make you
special. And to this day, he still believes that. I even caught him telling Julianna this a few
months ago when she asked him why he had spots. Otherwise he is a great kid, and a little too
smart for his own good.
be made fun of because of his “spots.” You really can’t see them unless he’s
swimming, and even then he wears a shirt to protect him from the sun. Because
they don’t fade until adolescence, there could be some challenging situations
ahead for him. But since he was little,
and started asking what the spots were, I always told him, those spots make you
special. And to this day, he still believes that. I even caught him telling Julianna this a few
months ago when she asked him why he had spots. Otherwise he is a great kid, and a little too
smart for his own good.
And with Nathan, my current worry is over
a fistula, or small hole that formed after his surgery because the palate did
not heal properly. His surgeon has never
seen it after one of his surgeries, but often corrects them after other kids
develop one from a different surgeon. So
my little Nathan broke his surgeon’s perfect surgery record! They do think the hole will close up on its
own, so we are just hoping and praying it will; otherwise he will have another
surgery. His surgery was VERY difficult because
he had a wide cleft, and the recovery was horrible. I almost took him back to the hospital a few
times because I worried he wasn’t eating enough, but we got through it and he
is doing much better. Because he has the
microduplication of chromosome 22, doctors are watching him closely to make
sure he develops normally. So far he is
ahead on all his milestones, is very social, and starting to say some words,
but this duplication can cause delays in many areas, and also heart and kidney
problems, so he will need an echocardiogram and ultrasound very soon to rule
out any problems there. And of course I
worry that his speech will be affected by the cleft palate. It is just a wait and see right now for him. He is very tiny, in the 1st
percentile for his weight, so I am trying to fatten him up now that he can eat
like a normal baby!
a fistula, or small hole that formed after his surgery because the palate did
not heal properly. His surgeon has never
seen it after one of his surgeries, but often corrects them after other kids
develop one from a different surgeon. So
my little Nathan broke his surgeon’s perfect surgery record! They do think the hole will close up on its
own, so we are just hoping and praying it will; otherwise he will have another
surgery. His surgery was VERY difficult because
he had a wide cleft, and the recovery was horrible. I almost took him back to the hospital a few
times because I worried he wasn’t eating enough, but we got through it and he
is doing much better. Because he has the
microduplication of chromosome 22, doctors are watching him closely to make
sure he develops normally. So far he is
ahead on all his milestones, is very social, and starting to say some words,
but this duplication can cause delays in many areas, and also heart and kidney
problems, so he will need an echocardiogram and ultrasound very soon to rule
out any problems there. And of course I
worry that his speech will be affected by the cleft palate. It is just a wait and see right now for him. He is very tiny, in the 1st
percentile for his weight, so I am trying to fatten him up now that he can eat
like a normal baby!
Miggy: Now for a
lighter question, I’m a big believer in seeing the humor in life and learning
to laugh, so have you ever had any funny conversations/moments you never
imagined due to your special needs situations?
lighter question, I’m a big believer in seeing the humor in life and learning
to laugh, so have you ever had any funny conversations/moments you never
imagined due to your special needs situations?
Kera:
I wish I could be
more like you, Miggy! I need to be
better at seeing the humor in things. But
of course there have been some instances… one that stands out is Julianna’s
current “phrase” she repeats. Not sure
if her repetitive phrases come from the Tourrette’s or autism traits, but she
usually has certain phrases she repeats when she is mad, sad, frustrated, etc. But right now she says, “I love you!” What a nice thing to hear from your special
daughter, right? Well, try hearing it
every single time she is done telling you something. For example, “Mommy, can I have some yogurt?” Me, “Yes.” Julianna, “I love you.” She inserts those three words after everything
she says to every person in the house. And
most of the time she even says it just because! And if you don’t answer her, she will keep
saying it until you do. Talk about
annoying to her little brother! I never
thought I would have to tell my child to STOP saying, “I love you.” It has
become so frequent that my husband has even started saying she needs to stop! I
just have to laugh about this one.
I wish I could be
more like you, Miggy! I need to be
better at seeing the humor in things. But
of course there have been some instances… one that stands out is Julianna’s
current “phrase” she repeats. Not sure
if her repetitive phrases come from the Tourrette’s or autism traits, but she
usually has certain phrases she repeats when she is mad, sad, frustrated, etc. But right now she says, “I love you!” What a nice thing to hear from your special
daughter, right? Well, try hearing it
every single time she is done telling you something. For example, “Mommy, can I have some yogurt?” Me, “Yes.” Julianna, “I love you.” She inserts those three words after everything
she says to every person in the house. And
most of the time she even says it just because! And if you don’t answer her, she will keep
saying it until you do. Talk about
annoying to her little brother! I never
thought I would have to tell my child to STOP saying, “I love you.” It has
become so frequent that my husband has even started saying she needs to stop! I
just have to laugh about this one.
Miggy: How can people best approach or respond to your
children or your family as a whole? Is there something you wish other people
knew so as to avoid awkward or hurtful situations?
children or your family as a whole? Is there something you wish other people
knew so as to avoid awkward or hurtful situations?
Kera:
On the outside, my children look very normal, and for the most part,
they are well behaved in public. But of
course there are times when they are not, especially Julianna, and I have
gotten stares and eyes rolled in my direction, and audible gasps, and even one
time in Wal-Mart after an episode by my daughter while standing in line, I
looked right at the people in front of me and said, “She has autism, OKAY???” I was stressed and embarrassed, but mostly
hurt because people need to be more understanding. My daughter looks normal but then behaves like
a much younger child sometimes and people assume I am a bad parent, when this
is entirely not true. I don’t want my
kids to go around with a big label to explain their needs, because really, what
I want is for them to be treated just like anyone else in the world, with
respect and understanding. This is a big
reason why I keep my daughter in a regular classroom with an aide—I want her to
learn from regular kids and model their behaviors, dreams, and goals. She is making so much progress this way. And for the most part, people don’t treat her
any differently at school. Having
special children has made me much more understanding of other families in the
same situation—if I ever observe a scene while I am in public, I just smile to
myself because I know what they are going through!
On the outside, my children look very normal, and for the most part,
they are well behaved in public. But of
course there are times when they are not, especially Julianna, and I have
gotten stares and eyes rolled in my direction, and audible gasps, and even one
time in Wal-Mart after an episode by my daughter while standing in line, I
looked right at the people in front of me and said, “She has autism, OKAY???” I was stressed and embarrassed, but mostly
hurt because people need to be more understanding. My daughter looks normal but then behaves like
a much younger child sometimes and people assume I am a bad parent, when this
is entirely not true. I don’t want my
kids to go around with a big label to explain their needs, because really, what
I want is for them to be treated just like anyone else in the world, with
respect and understanding. This is a big
reason why I keep my daughter in a regular classroom with an aide—I want her to
learn from regular kids and model their behaviors, dreams, and goals. She is making so much progress this way. And for the most part, people don’t treat her
any differently at school. Having
special children has made me much more understanding of other families in the
same situation—if I ever observe a scene while I am in public, I just smile to
myself because I know what they are going through!
Miggy: Some
people might feel singled out or ‘why me?’ about having 3 children who all have
special needs, yet one thing that impressed me in your email was when you said,
“…the best part is they all have red hair. We are so blessed!” I
would love to hear why you feel so blessed and what you want others to know who
may wonder why you feel that way.
people might feel singled out or ‘why me?’ about having 3 children who all have
special needs, yet one thing that impressed me in your email was when you said,
“…the best part is they all have red hair. We are so blessed!” I
would love to hear why you feel so blessed and what you want others to know who
may wonder why you feel that way.
Kera:
When my baby was
born, I definitely felt the “why me” come crashing down for a little while. But
then I started to think how honored I was to have such unique children who are
each teaching me about tolerance, acceptance, and patience. I have been to almost every specialist out
there, and a person on the new team of doctors for Nathan even remarked, “You
could almost have a medical degree by now with what you have been through with
your kids!” I was chosen to be their
mom, not anyone else, which means I have the capability to care for them in the
way they need to be cared for. And these
three kids are strikingly beautiful! Almost every day I ask myself how I got such
beautiful redheaded children. They are
special because they are mine, and I don’t even see their needs anymore. I see them for who they really are.
When my baby was
born, I definitely felt the “why me” come crashing down for a little while. But
then I started to think how honored I was to have such unique children who are
each teaching me about tolerance, acceptance, and patience. I have been to almost every specialist out
there, and a person on the new team of doctors for Nathan even remarked, “You
could almost have a medical degree by now with what you have been through with
your kids!” I was chosen to be their
mom, not anyone else, which means I have the capability to care for them in the
way they need to be cared for. And these
three kids are strikingly beautiful! Almost every day I ask myself how I got such
beautiful redheaded children. They are
special because they are mine, and I don’t even see their needs anymore. I see them for who they really are.
Miggy: What’s
the biggest lesson you’ve learned since becoming a special needs mom?
the biggest lesson you’ve learned since becoming a special needs mom?
Kera:
This has to be the
hardest question of all. Wow. Maybe that many things are out of my control,
and that’s okay. In my own personal
life, I like things to be controlled, planned out, and predictable. But with my kids, everything is up in the air,
unpredictable. I can’t control my
daughter when she’s having a major tantrum, but I can control how I react. This is something I am still struggling with. I get angry and frustrated, often, when she
has these episodes and there is nothing I can to do help her! I don’t know when
Blake’s spots will disappear. I don’t
know how my baby’s speech will develop, or if he has any other delays that I
don’t about yet. So what I need to do is
just let all these unknowns go and focus on one day at a time, being a better
mom each day. That’s about all I can control, is what kind of mom I am to my
kids. So I will continue to learn this
lesson throughout my life!
This has to be the
hardest question of all. Wow. Maybe that many things are out of my control,
and that’s okay. In my own personal
life, I like things to be controlled, planned out, and predictable. But with my kids, everything is up in the air,
unpredictable. I can’t control my
daughter when she’s having a major tantrum, but I can control how I react. This is something I am still struggling with. I get angry and frustrated, often, when she
has these episodes and there is nothing I can to do help her! I don’t know when
Blake’s spots will disappear. I don’t
know how my baby’s speech will develop, or if he has any other delays that I
don’t about yet. So what I need to do is
just let all these unknowns go and focus on one day at a time, being a better
mom each day. That’s about all I can control, is what kind of mom I am to my
kids. So I will continue to learn this
lesson throughout my life!
***************
Yes Kera, I do think you’ve earned an honorary medical degree! Thank you so much for sharing your beautiful children with us today. First, I’m glad you said that honestly, it’s been really hard. I’m sure it has been hard and for other families who may find themselves in a similar situation, it doesn’t really help to sugar coat. That being said, I’m also glad to hear about the positive things you’ve been able to focus on, because that’s true too! And I love when you said, “I was chosen to be their mom…which means I have the capability to care for them in the way they need to be cared for.” So, so true and I’m glad you remind yourself of that. Thanks again and please give those adorable kiddos squeezes from me.
If you or anyone you know would like to participate in the special needs spotlight please email me, or have your friend/family member email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend!
Hi Miggy! I love your blog and the new format looks awesome. One thing though- the font on this post is super difficult to read. Do you think you could change it to something else? Thanks!
Robin–Yes! Totally agree…have already talked to my designer about it. I'm glad I'm not the only one…thanks for the feedback.
Hi Miggy, I ditto Robin's comment, the main body text font is really hard to read. But the redesign is beautiful!!!
Miggy, the post looks great! I hope it wasn't too long. I tried to keep it short talking about 3 kids! Thanks again for the opportunity! I have lots of friends with special needs kids, too. I'll have to spread the word.
Thank you for sharing the story of your children. I love all of these spotlights but yours has got to be one of my very favorites! I appreciate your honesty about how it can be really hard sometimes but what a great perspective you have about it all. Here's a virtual ((hug)) from one special-needs mama to another.
Thanks so much, Heidi! I really appreciate your kind words. It's interesting hearing from people I don't know, because it makes me realize that maybe I am doing something right!
Kera–it was great–in length and content. I really loved hearing your perspective, the good and the bad…and it seems like a lot of other people did as well. Thanks again!
Gosh I love these interviews. About this one in particular, I noticed the honesty. Kera was so honest about the tough- it makes it so you really believe her when she says she feels blessed and that she sees her children without their needs. It's strikingly brave, I think. And I'm glad she says she has a good husband and family and support system because I'm sure it can be so hard sometimes!
Thanks Kera- hang in there- you are inspiring (and I don't say that lightly).
Thanks so much, Kayli! I appreciate your thoughtful words. I never really thought of myself as inspiring, thank you! Just doing what I need to do for my kids.
Love the site, think it looks great! But just chiming in, it's super hard to read with that font.
Agreed! Will fix that soon. Thanks for the feedback.
Hi! I just wanted to say that I love reading your blog. The new font hurts my eyes though.
As a friend of Kera's, I just want to say how proud I am of the wife, mother, and woman she is. She has always been a strong and capable person. Her children and husband are so lucky to have her. Her honest spirit comes across in her great writing. I'm planning to share it with others who can benefit. Thanks for interviewing her.
Love you, Cassie!
Wow! She is amazing. Having one special needs kiddo is exhausting for me at times, and she does it with 3! And she has a super cute family picture…..I can't seem to keep my buns in gear and get one of our family! Keep up the good work with those cute kids.