Hello! My name is Kimberly. I’m married to David, my voice of reason. We have 3 children William, 8, Ruth, 6
and Mary, 4. And a dog named
Jefferson. William and Mary, both
have Down syndrome. While it can
and does happen it isn’t very common to have two children with Down syndrome
with no family history of it. More
than one doctor has suggested we play the lottery. I like think we’ve already won. I spend my
days chasing, herding, feeding, wiping, calming, hugging, laughing, and playing
with our children at home. In
other words I’m pretty much making things up as I go.
***************
Miggy:
Kimberly, you are only my second spotlight of a child with Down syndrome,
but you have not one, but two remarkable kiddos affected by Down’s. So
lets start with your son William, the oldest, do you remember the day you found
out William would be born with Down syndrome? Can you compare what you
felt then with how you feel now?
Kimberly, you are only my second spotlight of a child with Down syndrome,
but you have not one, but two remarkable kiddos affected by Down’s. So
lets start with your son William, the oldest, do you remember the day you found
out William would be born with Down syndrome? Can you compare what you
felt then with how you feel now?
Kimberly:
We did not know that William had Down
syndrome until he was born. And
even then it was a little confusing. At the hospital there was a Respiratory Therapist there, who
happened to have a 12 year-old son with Down syndrome, and he knew right away. In the days that followed the doctors
would come to examine him and would list off all these things that would/could
be wrong with them. Then, after
looking him over, he didn’t have much wrong. They kept saying, “he could have Down syndrome,” and
yet they couldn’t seem give us definitive answers. It was, to say the least, emotionally draining. Finally, a week later we received his
test results back. We were
devastated. Which sounds harsh but I think it was also necessary for our
healing. I cried. A lot. All we could think about is all the things he wouldn’t be
able to do. Now,
8 years later, my perspective has changed completely. I’m pretty sure he’s a rock star. He constantly amazes me with what he
learns and retains. He has some wicked monkey bar skills and can put people to
shame with his basketball abilities. It’s not
always easy and it’s hard not to recognize the gap between him and his peers is
growing and yet I know I can’t put limitations on him, or any of my children,
for that matter.
We did not know that William had Down
syndrome until he was born. And
even then it was a little confusing. At the hospital there was a Respiratory Therapist there, who
happened to have a 12 year-old son with Down syndrome, and he knew right away. In the days that followed the doctors
would come to examine him and would list off all these things that would/could
be wrong with them. Then, after
looking him over, he didn’t have much wrong. They kept saying, “he could have Down syndrome,” and
yet they couldn’t seem give us definitive answers. It was, to say the least, emotionally draining. Finally, a week later we received his
test results back. We were
devastated. Which sounds harsh but I think it was also necessary for our
healing. I cried. A lot. All we could think about is all the things he wouldn’t be
able to do. Now,
8 years later, my perspective has changed completely. I’m pretty sure he’s a rock star. He constantly amazes me with what he
learns and retains. He has some wicked monkey bar skills and can put people to
shame with his basketball abilities. It’s not
always easy and it’s hard not to recognize the gap between him and his peers is
growing and yet I know I can’t put limitations on him, or any of my children,
for that matter.
Miggy:
Then 4 years later, you have another child, Mary, born with Down
syndrome, not to mention another daughter in between! In one sense I
would imagine it to be overwhelming to know you now have 2 children with
special needs, but in another sense I would think it’s just another blessed,
amazing soul who gets to be a part of your family and you’ve already
been-there-done-that. So tell me, how did you feel the second time
around?
Then 4 years later, you have another child, Mary, born with Down
syndrome, not to mention another daughter in between! In one sense I
would imagine it to be overwhelming to know you now have 2 children with
special needs, but in another sense I would think it’s just another blessed,
amazing soul who gets to be a part of your family and you’ve already
been-there-done-that. So tell me, how did you feel the second time
around?
Kimberly:
Again with Mary we did not have a
pre-natal diagnosis. The moment
she was born David and I both knew. We looked at each other and had the thought, “really? Oh
well, here we go again.” So many
of the fears we faced with William were not there, having lived through it once
before. Not long after she was
born I began having complications that very much overshadowed her having Down
syndrome. In fact she had to be
released from the hospital before I could be. After that storm passed it was easy to settle into this new
normal, one that I couldn’t have ever imagined belonging to me. She was so much easier than he was. I joke that William is the guinea pig
and we get to do everything right with Mary.
Again with Mary we did not have a
pre-natal diagnosis. The moment
she was born David and I both knew. We looked at each other and had the thought, “really? Oh
well, here we go again.” So many
of the fears we faced with William were not there, having lived through it once
before. Not long after she was
born I began having complications that very much overshadowed her having Down
syndrome. In fact she had to be
released from the hospital before I could be. After that storm passed it was easy to settle into this new
normal, one that I couldn’t have ever imagined belonging to me. She was so much easier than he was. I joke that William is the guinea pig
and we get to do everything right with Mary.
Miggy:
One thing I know I worry about is not letting our daughters special
needs over-shadow our other daughter. Is this a big concern for your
middle daughter? If so, how do you manage this?
One thing I know I worry about is not letting our daughters special
needs over-shadow our other daughter. Is this a big concern for your
middle daughter? If so, how do you manage this?
Kimberly:
This is such a good question! I am so very much aware of the fact that
she deals with so much more than I had to when I was her age. And because of our family dynamic she is
very different from her peers and friends. Not only that but she’ll have many things placed on her the
older she gets. It’s over whelming
for me just to think about it. As she’s gotten older she has become more and more
aware that her brother and sister are different. Although in our house she’s the odd man out. I try to be honest with her when she
asks questions and give her age appropriate answers. We are very
careful not to refer to William and Mary as being special because I don’t want
her to think that she, and her needs for that matter, are not special. In my opinion she is just as special as
they are. Having children with
Down syndrome we’ve learned to celebrate all the little things and we do the
same things with her. Something as
small as when she started coloring in the lines we made a huge deal out of it. I also try to give her one-on-one time
so she doesn’t feel left out. For now I’m just grateful that
the biggest thing she’s miffed about is that she doesn’t get to ride the bus to
school like they have.
This is such a good question! I am so very much aware of the fact that
she deals with so much more than I had to when I was her age. And because of our family dynamic she is
very different from her peers and friends. Not only that but she’ll have many things placed on her the
older she gets. It’s over whelming
for me just to think about it. As she’s gotten older she has become more and more
aware that her brother and sister are different. Although in our house she’s the odd man out. I try to be honest with her when she
asks questions and give her age appropriate answers. We are very
careful not to refer to William and Mary as being special because I don’t want
her to think that she, and her needs for that matter, are not special. In my opinion she is just as special as
they are. Having children with
Down syndrome we’ve learned to celebrate all the little things and we do the
same things with her. Something as
small as when she started coloring in the lines we made a huge deal out of it. I also try to give her one-on-one time
so she doesn’t feel left out. For now I’m just grateful that
the biggest thing she’s miffed about is that she doesn’t get to ride the bus to
school like they have.
Miggy:
Explain how your children’s special needs affect your day-to-day
life?
Explain how your children’s special needs affect your day-to-day
life?
Kimberly:
One of our biggest issues with both of
them has been hearing. William has
had a total of 6 sets of ear tubes and Mary 2. They have both been diagnosed with mild to moderate hearing
loss which requires hearing aids. Keeping those, plus their glasses, on their person
is no easy task. When we’re home I’ll often skip one or the other since I would
have to follow them around every waking moment to make sure they don’t get
ripped out and torn apart. They’ve also been found under couches, thrown down
stairs, in my purse. I think I
even found a hearing aid in a shoe once.
One of our biggest issues with both of
them has been hearing. William has
had a total of 6 sets of ear tubes and Mary 2. They have both been diagnosed with mild to moderate hearing
loss which requires hearing aids. Keeping those, plus their glasses, on their person
is no easy task. When we’re home I’ll often skip one or the other since I would
have to follow them around every waking moment to make sure they don’t get
ripped out and torn apart. They’ve also been found under couches, thrown down
stairs, in my purse. I think I
even found a hearing aid in a shoe once.
Along the lines of hearing loss is
communication. That is probably our greatest struggle on a day-to-day basis.
They both are verbal but very hard to understand, although Mary has more sounds
and is much easier to understand than her brother. They get just as frustrated as I do when they’re trying to
tell me something and I can’t figure out what they need or want. It requires
lots of trial and error and lots of patience from them and me.
communication. That is probably our greatest struggle on a day-to-day basis.
They both are verbal but very hard to understand, although Mary has more sounds
and is much easier to understand than her brother. They get just as frustrated as I do when they’re trying to
tell me something and I can’t figure out what they need or want. It requires
lots of trial and error and lots of patience from them and me.
Those with Down syndrome are prone to
wander and we have lost William more than once because of his wanderings. Now that he’s older he’s included Mary
in his wanderings, too. It can be
so scary at times. I truly believe
that it is more that they are extremely curious and extremely bent on doing
their own thing than it being aimless wandering. We have to constantly be on our toes and constantly know
where they are. Since Mary can’t yet unlock and open doors it is a little
easier with her, sometimes. William, though, has been known to get up and leave
the house before 7. Also
with William, I have to be one step ahead of him and see what he is about to do
so I can either stop him or redirect him. When we’re out in public he has gotten a lot better and knows
to stay were we can see him. Not that he always does it but I know he knows it.
Mary is just starting to test and
see how far she can push us.
wander and we have lost William more than once because of his wanderings. Now that he’s older he’s included Mary
in his wanderings, too. It can be
so scary at times. I truly believe
that it is more that they are extremely curious and extremely bent on doing
their own thing than it being aimless wandering. We have to constantly be on our toes and constantly know
where they are. Since Mary can’t yet unlock and open doors it is a little
easier with her, sometimes. William, though, has been known to get up and leave
the house before 7. Also
with William, I have to be one step ahead of him and see what he is about to do
so I can either stop him or redirect him. When we’re out in public he has gotten a lot better and knows
to stay were we can see him. Not that he always does it but I know he knows it.
Mary is just starting to test and
see how far she can push us.
Needless to say by the end of the day
I’m exhausted!
I’m exhausted!
Miggy:
What are the biggest worries you face for your kiddos?
What are the biggest worries you face for your kiddos?
Kimberly:
I try not to worry too much, or I think
I’d go crazy! Having said that we
do worry about what health challenges they’ll face as they grow. When we look at them we don’t see Down
syndrome, we see William and Mary. We hope that they will always have people in their lives, as
they do now, that see them that way. We hope that they can contribute to the world around him, no
matter how small a way.
I try not to worry too much, or I think
I’d go crazy! Having said that we
do worry about what health challenges they’ll face as they grow. When we look at them we don’t see Down
syndrome, we see William and Mary. We hope that they will always have people in their lives, as
they do now, that see them that way. We hope that they can contribute to the world around him, no
matter how small a way.
Miggy:
Now for a lighter question, have you ever had any funny
conversations/moments you never imagined due to your special needs
situations?
Now for a lighter question, have you ever had any funny
conversations/moments you never imagined due to your special needs
situations?
Kimberly:
I usually feel like we’re a traveling
circus. So I think just about
everything they do is hilarious. I
have never been one to embarrass easily. And since becoming their mother it’s
very rare that I am embarrassed. This
came in handy a couple of months ago when the school called to tell me that
William wasn’t wearing any undies and so I trucked it there to give him some. I feel like such a super mom when he
does stuff like that for his teachers, aides, and various school staff, to
witness.
I usually feel like we’re a traveling
circus. So I think just about
everything they do is hilarious. I
have never been one to embarrass easily. And since becoming their mother it’s
very rare that I am embarrassed. This
came in handy a couple of months ago when the school called to tell me that
William wasn’t wearing any undies and so I trucked it there to give him some. I feel like such a super mom when he
does stuff like that for his teachers, aides, and various school staff, to
witness.
Miggy:
What is the biggest lesson you’ve learned since becoming a special needs
mom?
What is the biggest lesson you’ve learned since becoming a special needs
mom?
Kimberly:
Often people say things to me like, “I
don’t know how you do it!” There are many days that I don’t know how I do it
either. I just try to do what
needs to be done. When I was first pregnant with William I could have never
imagined living through what I have. We don’t know how strong we are until we’re faced with these
kinds of life changing experiences. I’ve learned that I don’t have to look beyond my children to
see some amazing things. They’re
constantly teaching me about patience, forgiveness and that laughter really is
the best medicine.
Often people say things to me like, “I
don’t know how you do it!” There are many days that I don’t know how I do it
either. I just try to do what
needs to be done. When I was first pregnant with William I could have never
imagined living through what I have. We don’t know how strong we are until we’re faced with these
kinds of life changing experiences. I’ve learned that I don’t have to look beyond my children to
see some amazing things. They’re
constantly teaching me about patience, forgiveness and that laughter really is
the best medicine.
***************
Hi friends! I know I said I was taking a blogging break, and I am, but I had this amazing spotlight already lined up. I want to thank Kimberly for sharing her amazing family with us. I particularly love what she said at the end about how she doesn’t know how she does it somedays either, but “we don’t know how strong we are until we’re faced with these kinds of life changing experiences.” So true. SO SO true. I know we can all related on one level or another. Thanks again Kimberly!
I’m going to be taking a little break from blogging (well, mostly) the next few weeks while I soak up these last days with my oldest at home. But PLEASE if you’d like to be spotlighted email me at thislittlemiggy at gmail dot com. Sometimes people send me contact info for other people who would make a great spotlight, but I just don’t have the time to chase ’em down anymore! So please, if you know someone who would make a great spotlight, please have them email me directly. Thanks you guys.
Have a great weekend!
Miggy
I am the sister/aunt to all of the above awesomeness. She truly is Superwoman!
A very beautiful family. You are all so lucky to have each other.
What a sweet family!! 🙂
beautiful family. beautiful story. beautiful perspective. thank you for highlighting this family and their journey.