*this is a blog that has taken me a few months to write so it may seem a little jumbled. men you may not be interested in the aftermath of pregnancy skip the first paragraph.
I
was inspired to write when I woke up in the middle of the night last night with
a major bleeding, I had gone to bed cramping real bad. After being awake for
over an hour trying to contact the nurse to make sure everything was normal I
was informed that I have probably started my period! What?! I am only four
weeks out from having Jude and I am pumping why the heck am I starting my
period already?! Now don’t get me wrong I am pumping because it is good for
Jude but I do have to admit not having a period for a while sounded like a nice
idea too! All I could think was “of course, of course I would be that small percentage
of woman who start their periods back ridiculously early” “of course I would
start my period before I even stopped my bleeding from the delivery.” When I
told my mom she said well nothing else in your pregnancy has been “normal” I
cant help but to think nothing else in my life has been “normal”
I’ve
always wanted to have children. When I was growing up everyone wanted to be a
doctor, ballerina, nurse, businessman or whatever I wanted to get married and
be a stay at home mom. I have always wanted to have children, even though I
want to be a social worker that has always come secondary by far distance from
being a mom. I would have and do anything to be a mom and even more to stay at
home with them. I would read Family Circle when I wasn’t even married while my
friends would sit and read US Weekly (haha becky) I thought about how I would
do all these things in preparation for my baby to come how I would enjoy being
pregnant and proudly show off my belly. Well we know how my pregnancy really went.
The
starting of this blog was back in February, I would like to say I have my heart
in check now everything in God’s plan makes sense and life is great but of
course that is not the case.
Last
year my sister, Cassy, got engaged! Cassy wanted a destination wedding and I
very eagerly encouraged that, an excuse to go to the beach? Yes please! I also
very much supported her asking one of my best friends to go as the photographer(maybe
for my benefit J ). Chris and I knew this would be a crazy trip
for us, pinching pennies to afford to go and having a 3 month old in Mexico, I
even went and picked up passport info to fill out for Jude ahead of time, the
thought of missing my baby sister’s wedding was clearly not an option! I mean
the besides your wedding the most exciting is your sister’s wedding. It’s that
once in a life time moment to share in the celebration. But tonight I sit here
in bed with Jude while my family is in Mexico preparing for my sister’s wedding
tomorrow. It breaks my heart to know that going to my sister’s wedding is no
longer an option, that this will be a time that I will never get to share with
her. But of course it doesn’t stop there, at the end of June my other sister,
Natalie, is getting married in Alaska, this is also not an option for me to go.
My two sisters and I have to miss out on two of the biggest days of their
lives….. Yes, life is not fair!!
I
feel at times my life is a constant battle, today we were at Jude’s doctors
appointment and he was really wanting to be held but if I held him then he
couldn’t eat. This was not a problem for other mom’s in the waiting room. I cant carry Jude around the house with me, he
cant go in the swimming pool, we cant leave the house for more then 4 hours, I
cant just put him to bed when he is tired; his cares take almost an hour at
night, I cant run to the store with him; it takes at least 30min to load him up
w multiple people helping, I cant leave him alone for more than a minute or
two, I cant breast feed him, I cant leave him with just any babysitter(actually
besides Chris & I only my mom can watch him); they must know all trach
cares, I cant hear him talk accept for less then an hour a day when his cuff is
down,
Note
this is now my third time trying to finish this blog and I now have it all
figure out! Ok maybe that last part is not true. Well both of my sister’s are
married and to add to the fun Jude had a shunt placed in his brain on Monday.
He now has four foreign objects in his body and in a few months when he gets
tubes for his ears it will make five! I am afraid to ask what else could he
have placed in him?!
Well
it is August almost September and Jude is still on his vent, he was only supposed
to go home trached. I feel like him and I live in the living room. Although we
are making progress I feel that we/he should be farther along. There are so
many things I want to do with him and place to take him, he’s my little baby I want
to show him off proudly. we have had a
few realization talks of where Jude is at and what that means in our near
future. We had planned (maybe naively) to travel with Jude to the NorthWest,
this wont be happening for the first few years of his life.
OK
this is my fourth and final time writing this blog and as you can tell there
are still many things that I find not to be fair & maybe you agree or maybe
you don’t.
I cant help but to think life isn’t fair, then
my mom’s voice in the back of my head says, “life will never be fair!” ughhh I
hated hearing that growing up! Who knew it would be preparing me for my adult
life. I find myself often trying to make things fair for people or what I assume
to be fair. I don’t want people to miss their chance or not have every opportunity.
Truth: I feel bad for the mop that has to stand in the rain because the person
has found their new Swiffer (ridiculous I know). My econ professor would always
talk about how people being born into certain wealth or life style doesn’t matter
because if everyone when born was given the exact same amount of money and
aloud to pay whatever to whoever and however much there would still be rich and
poor people. He’d always ask the class who would actually willing pay the same
amount to a random officer out of their own paycheck as they would to go see a
football game. We want fairness but really what we want is a life of no pain. We
want our cake and eat it too. I think I have spoken about this before, but I don’t
believe God is punishing me or trying to teach me a lesson. I think God cries
with us, he felt the pain and cried the day we found out about Jude’s tumor, he
cried with each painful moment Jude had. Satan wants us to believe that God did
this to us and now we have to face this horrible life but God did not do this
to Jude he knew this was going to happen and so he began to set life emotion to
help guide Chris and I to be the right parents for Jude. Chris and I always
talked about his decision to work as a special Ed teach and mine to be a Social
Worker was no coincidence we knew God must be preparing us for something (&
not the being poor part). How can I say life is not fair and pout when I clearly
can see God preparing so many things and people to help us in this journey with
Jude. It’s so easy to be tempted to look at the other side and only see the
negative in our lives but the truth is without all this “bad” stuff I wouldn’t have
the Jude I have now I would have another baby and all though I am sure I would
love them they wouldn’t be my Jude and I cant imagine not having him tubes and
all.
I
know I don’t have it all figured out and I can say that Satan is constantly
tempting me with what I “deserve.” He plays into my shame when I want to scream making me think I dont need to be a whiner but then when I try to be "strong" then I am not fully honest. so maybe this blog is my way of saying life is not fair but that's ok because God is my strength and he will pull us through and has given us all the blessings. We all have hard things in life I am not
saying we just act like they are not there but I have made the decision not to
dwell on the bad. We all have three different ways we can see our own lives
either written only with the bad and missing what blessings we have, being
written only with the good and not really honestly seeing our life, or being
able to accept the bad and know the good is a great blessing. I could probably
share for pages the things I have learned in regards to what is fair, being truly
grateful for what we have, and ultimately trust but I think it can be best
summed up in this scripture:
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every
situation, by prayer and petition, with thanksgiving, present your requests to
God. And the peace of God, which transcends all
understanding, will guard your hearts and your minds in Christ Jesus.
Finally,
brothers and sisters, whatever is true, whatever is noble, whatever is right,
whatever is pure, whatever is lovely, whatever is admirable—if anything is
excellent or praiseworthy—think about such things. Whatever
you have learned or received or heard from me, or seen in me—put it into
practice. And the God of peace will be with you.
I rejoiced greatly in the Lord that at last
you renewed your concern for me. Indeed,
you were concerned, but you had no opportunity to show it. I am
not saying this because I am in need, for I have learned to be content whatever
the circumstances. I know what it is to be in need, and I know what it is to
have plenty. I have learned the secret of being content in any and every
situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.
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Over the last month Jude
has really made huge strides in his independence, especially in his therapies. Every week we go to “school” twice a
week. Jude walks into that place like he
owns it. First is Physical therapy, he has gone from having to real coach, redirect,
encourage him that its safe to Jude confidently doing things without been
asked. After he “completes” his first task he will move himself onto his second
thing. After we are finished he says “bye” and “thank you” then we walk over to
his Occupational therapist. Jude loves
her, I think it’s because she sings to him all the time and lets him play with
puzzles! He loves learning. She works a lot with stretching his upper torso and
neck. She also works with different textures, Jude has grown leaps and bounds
with what textures he will touch or allow to be on him. Next we head to Speech,
Jude has had to speech therapist there and he likes both. He goes into the room
with a toy in mind that he already wants to play with. His speech therapist are
working towards helping him communicate. We are learning signs, how to use a
communication devise, and verbal speech (maybe he’ll show us all and talk
non-stop) Trying to learn 1 language is tough, try learning 3 ways to
communicate!.jpg)
On Fridays we go for group therapy.
He is in class with 5 other kids his age. Throughout the class period we cover
all the therapies. He loves class! On the way there I will go down the list of
people we will see and confidently says, “uh” (the sound he makes when he is “talking”
agreeing with you) then he’ll “sign” their name (whatever sign he has chosen to
give them that day) Jude always wants everyone to go before him in
his class. When the teach ask who should go first it never fails Jude will
always point to one of his classmates for them to go first, he points to each
child till everyone has a turn. I hope this sweet manner stays with him always J Jude has started blossoming
in class he no longer has to have me right next to him the whole time and will
actually walk away from me at times (not a lot yet but we are working on it). I
say he loves his class but really we both love it! 
Lastly is his aquatic therapy! Jude
has been with this Physical therapist for over a year and a half, we started
out on land not water ;) but in January we transitioned him into the pool. Jude
loves taking a bath but his first day in the pool was him crying the whole time
and clenching to the sides trying to
grab me. Now he gets in with hardly any hesitation and cant wait to walk to the
middle of the pool. The pool has a raising bottom so they raise it so the water
goes no higher than his chest. Right now he does aquatics to help strengthen
his core and work on his balance; he does not go under water or float on his
back. Now when we pass the pool area on our way to another appointment he signs
his therapist name, swim, and hippo (we don’t know why he signs hippo). Yesterday
we saw his therapist at his vent appointment and we asked if he was going to go
swimming with her next week started crying when we didn’t go swimming right
then. She has helped him so much and has taught us a lot! 
Jude the Ad”vent”urer
