I want to write on my blog as much as possible, believe me I
do. I wish I could find the time, but it
is so difficult. I don’t know how the blogs I follow do it,
some of which have more than one child with Fragile X. These moms are truly amazing and I feel like
I truly know them and their families, even though we have never met. I want to
thank all the friends and family who follow and read my blog; I didn't realize how many people enjoy our family stories.
So much as happened since I last wrote I don’t even know
where to start. We had the 6th
annual Fragile, Not Broken Walk for Knowledge in June. Even though the walk fell on the same weekend
as the Komen Race for a Cure, there was still a big turnout. So many of our friends and family came out
with us and walked in support of Jackson.
I feel like I can’t thank those who participated and donated enough, it
means so much to me. I feel bad that I
haven’t had a chance to individually thank everyone. Jackson was all smiles all day, helps that
his nephews were there. I hope that our
team grows every year.
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| Team Jackson 2012 |
Sara and I have been trying to find a house since April in
the Parkway West district. We found a
house that we loved spite the fact it needed a lot of updates and got an
accepted contract, but after the inspection revealed a multitude of problems we
had to walk away. Honestly I am not sure
which was the last straw as the list grew, maybe it was the massive leaking
basement wall after a slight rainfall or the mice family in the attic, but our
inspector found 42 items that needed to be repaired. Some of those items included more than one
item, like the leaking faucets in all 3 bathrooms. The good news is we didn’t buy the money pit;
the bad news is we really wanted the house. Two weeks… We had called Parkway West when had our
initial accepted contract to get the balling rolling before we even moved. I think the icing on the cake of heartbreak
for the horrible inspection was the call we got from Parkway West about adding
services to Jackson’s current IEP. They
were really shocked at the limited services he was receiving at Northwest, they
were specifically floored that Jackson was not receiving any speech at
all. Sara told them we were paying
privately, to which Parkway responded that we shouldn’t have to pay privately,
the school should be providing that. Even
though the house fell through it only reassured us that making the move is in
Jackson’s best interest. So the day we
walked away from the contract on the money pit house, we started looking
again. It is so exhausting going from work
to looking at multiple houses in one night.
We are fortunate to be able to drop Jackson off at Sara’s moms on the
way and pick him up after. Now if we can
just find a house we both like again…we will be set.
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| Catching a wave |
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| Having fun in the ocean |
House hunting set aside we traveled as a family to Miami for
the International Fragile X Conference.
It was our first conference since Jackson’s diagnosis. We also tried to get a little bit of family
vacation while we were there by visiting a beach. The hardest part of the trip for all of us was
the plane ride there and back. Jackson
doesn’t sit still for a long period of time ever, so to have to sit still for 3
hour flights just forget about it. We
tried medicine on the way there, then upping the dosage on the way back. We had his favorite snacks and activities,
but nothing seemed to calm him. We had a
lot of hair pulling, a lot of kicking the seat in front, and a lot slamming
into the back of his seat. Aside from
that, the trip was great. I was warned
about Miami’s humid weather, but coming from St. Louis with 104 temps at 90%
humidity I didn’t even notice. We stayed
at the hotel where the conference was held, it was walking distance from a mall
with a ton of eateries. We got some
great pictures at the Hard Rock Cafe, ate at Bubba Gump Shrimp, and the hotel
food itself was amazing. Jackson was a
flirt everywhere we went and his favorite spot was the hotel pool.
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| Ham'n it for the camera |
The conference itself was amazing. They offered childcare
which was great because there were so many sessions to attend. Sara and I divided and conquered, trying to
go to as many sessions as we could. It
is overwhelming the amount of information they pack into these sessions. I went to a clinical
session where I was so lost from start to finish. Sara and I both attended Hand-On Hyperarousal
Workshop that was led by Mouse and Tracy.
It was by far my favorite session because we got to experience how it
feels to be hyperaroused and we can teach others what it feels like by making
them participate in this small little exercise.
I thought I knew how hard it is for my little man to function in this
world, but I was completely blown away and to be honest had no real clue. The common word used in the majority of the
sessions I attended was “Hyperarousal”. Even
though the information at times felt overwhelming, it was also good to be
reassured that we are on the right path in helping Jackson succeed. Since Jackson is still young we did miss the
big luncheon and dinner banquet which would have given us more opportunity to
talk to other families, but I am glad we chose to have some family time
too. Sara did get to go to the Mission
to Lars viewing while I put Jackson to bed, I was a little bummed that I didn’t
get to see that. We
were able to meet up with Sara’s grandpa and grandma for lunch. The visit seemed too short, but they were
able to see Jackson. Sara’s grandma
brought Jackson a little goodie bag with yummy treats, cute sunglasses, and
bubbles. Jackson literally bounced the
entire time they visited. I can’t
remember if Jackson was walking yet the last time they were able to see
him.
Since we have been home from Miami we have been busy house
hunting. Saturday we had a showing of
our house and went to the Fragile X BBQ at the Howards. They are so nice to open their home to
everyone and the food spread is always amazing.
Even though Jackson takes up the bulk of our time at events, we find
time to take turns and mingle with the other parents. It is nice to be around friends who are or
have been in shoes similar to ours. Plus
there is a pool and Jackson loves pool time.
Jackson pulled on one of the little girls’ hair in the pool and she
handled it so well. I also have a BBF
every time I see her. She loves to ask
many questions and has such a great imagination, I really enjoy our talks. She even lost a tooth which was super
exciting; I hope the tooth fairy visited her.
We wish could have stayed longer and visited more, but we didn’t want to
push Jackson too far. I think he may
have had too much pool water because on the way home he made himself sick. Jackson was getting so much better at not
sticking his fingers down this throat, but this time we couldn’t distract him
away from it at all. Sara believes he
had an upset stomach. When we got home I
pulled the hose around to clean him and his car seat off, he of course loved
it. Then I took him upstairs for a bath
while Sara finished cleaning the car seat.
After his bath, we switched and I finished cleaning out the car. Did I mention that after he got sick he
starting clapping and smearing his stomach contents on the window? I think most parents would be screaming at
the top of their lungs over this, but all I could do is laugh at this point. I will admit I was not laughing when he was
making himself sick on the way home, mostly because it makes me want to get
sick. The finger thing has always got
to me. I sure do miss Billy Mays, but
Oxi-clean is by far a life saver for times like this. Next year we will be living much closer to
everyone so we will be able to stay longer and the drive home won’t be as far,
less time for incidents like this.
