Sometimes it is OK to cry… in the shower.

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I knew I needed a photo of today of just us, my love.

As I took a shower tonight I had to remind myself that it was ok to cry before I actually did.  I should start by saying it was a long day, and if you want to include from the start of my concern for Eidan, then we can say its been a long month.

To begin, by niece has type 1 diabetes so it has been in my life for 17 years now, so when Eidan started peeing more than usual at night in bed, I started to worry.  He has been waking up in the morning with the front of his shirt, his pants, and his bed soaked with pee.  His tantrums  also seem to come to a complete stop when I give him something to drink, telling me that he is more thirsty than normal so I made an appointment with the doctor a few weeks ago, but then I cancelled it because I thought I may have been reading into it too much.

More recently, my mom and my husband got to see and feel what I was talking about and they concluded that yes, it was a considerable amount.  So today was the actual doctors appointment and as soon as we got into the room he was fighting everyone for the first hour of vitals (including the blood work and placement of the pee bag).  The second hour he would only sit in my lap and watch videos on my phone, while we waited for him to pee in the bag.  The third hour was us walking around in the green grass trying to initiate the pee that we had been waiting for, for three hours already until it finally came.  The whole morning I was nauseous at the thought anything being wrong with my son, and by the end of the appointment, I was hungry and I had to get home to feed Eva through her g-tube, and make something for Eidan.

When we got home I got some confusing results from the nurse… first, his blood sugars from his urine was a bit high, but after I mentioned that he had just ate right before he peed in the bag, so that number was ok, then I got another call telling me that he needed to see a endocrine specialist, on top of the urology doctor because they were just a little concerned with another number (I can’t recall the name because I was in a daze because I though he was just cleared).

I can’t exactly express how I feel because I don’t know how to feel, other than I was prepared for Eva’s issues but I can’t say I am prepared for this… I don’t even know if this is a “this” yet.  But I can tell you that after my shower and my long cry I felt absolutely chosen for these two children.  Despite any more bumps in the road that we may have, no matter how many more shower cries I have from now on (whether this situation is a problem or not), I don’t care how “hard” my life may be, I can say one thing for sure… I can’t do shit without God, period.

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The first 24 hours of being 2×2

Do two year olds know when they turned two and do they know that they are supposed to act entirely different as soon as their birthday hits?  Eidan and Eva apparently got that memo and they are tracking.  Here are the babies newest shenanigans…

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Eva is now more persistent than ever!  The word, “No” is just a sound that comes out of moms mouth but means absolutely nothing.  However, lets brush your teeth sends her running and screaming like a hyena.  Climbing new toys is her new thing, along with falling.  Her favorite thing to do is taking a toy that Eidan is playing with and getting upset when he takes it back from her while I sit on the side lines to see if I need to intercede.  So much fun.

Eidan is talking up a storm.  His favorite word is circles and cake.  Cake is his favorite food and has learned that when you sing them happy birthday, cake follows.  He loves to close the door on you as soon as you walk off for even a second, when you open the door he is standing there just waiting for you with the sneakiest face.  He loves screaming like a pterodactyl if anyone is too close to his toys, especially his sister.  So I hear that dinosaur scream all the time.

Update: Evas ear, nose and throat dr has confirmed she has severe apnea.  We will be seeing her dr. next month to know what his plans are for her.  I will admit, I knew she had it but I did not know how bad.  The news came as a huge surprise and it got me down because it means that inevitably she will be needing another surgery and it breaks my heart.  For the first time I will not obsess about the outcome.  I will simply take it as it comes and pray about it often.  I tend to worry about worst case scenarios and have anxiety every night but I will make a constant effort to give it to God.  This may be the hardest task for me since my imagination is absolutely on another level.

and new news……..*insert drum noises* and we have a new (possibly temporary) family member………… it’s really up to him…

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Lilo

Josh found him injured on the floor during a night run.  I called the wildlife phone number and they said they would just put him down.  I have decided to take care of him until he gets better (God willing).  He seems to be flourishing… probably because he is getting fed around the clock during the day…. literally every 15-30 min in the day.  I am glad Josh found him because having Lilo has made me realize if I have time to feed the bird I DEFINITELY have time to consistently work on feeding Eva by mouth EVERY meal. Whether she takes it or not is up to her but I have faith that she will start taking food by mouth before she is three.  If you are reading this please keep that in your prayers too.  This may be her toughest hurdle yet but I know she can do it!

Been there…done that.

I have been there, I have done that and then I more than likely did it again.  I have experimented with many hair colors, styles and cuts.  I have experimented with many piercings and I have many tattoos and I also have plans for many more.  I have done drugs, I have partied all night, and I have lived like a rockstar. I have been a wife to a man who was an infantryman who jumped out of planes and I am still married to the same man who is now a police officer. I am a mother of g/b twins whose first few months were the roughest months of my life.  I have done some pretty terrible things when I was younger and I have said some unforgivable words, but I have been forgiven and I have also forgiven myself (somethings I have to constantly forgive myself for).  I have done so much that my life should have been on a TV show.  I guarantee it would have been very exciting.

Today I was thinking about how low-key my life has been since having the babies and I truly couldn’t be anymore happier.  I don’t have an itch to go out to drink or party anymore and to be honest I haven’t in a long time and it is absolutely wonderful.  On the flip side of that I understand how parents who have children young, and who weren’t able to have a “fun phase” in life tend to do so after their kids get older.  Im glad I got that out of my system when I did.

It’s so interesting that every time I planned on getting pregnant I would obsess about being a mom. Then every time I found out I was in fact pregnant (when I say, “every time”, this includes the pregnancies that resulted in miscarriages) I would immediately freakout about how many things I still wanted to do with my life.  I can honestly tell you after having the twins that thought hasn’t crossed my mind at all.  My selfish thoughts have gone out the window entirely and everything I think of from now on is how to better my family and how can I help other kids.  There is so much I want to do now but it is the totally opposite of the plans I had before becoming a mother.

Its so funny though, before I would drink and I was able to go to work the next morning… a few days ago for my 33rd birthday I had a few sips of wine, the next morning I felt hungover.  Its also so funny that how before, when I used to color my hair for fun, I now how to color my roots around the clock so people still think I’m 25, when I am already in my 30’s.  As much as I want to still get more piercings I don’t want people to think I am trying to hard to look young so I just settle for getting ink…. Im not really settling, I truly love it.

My advice to people who worry about the same things that I did before having the babies is, enjoy yourself and your husband.  Enjoy your sleep, enjoy your vacations, your hobbies, and your freedom.  When you have your baby know that your priority will be that child for the rest of your life.  Your sleep will be nonexistent in the beginning, your time will not be to do what you want, it will be to do what you need to do, and most importantly your heart will no longer be yours.  Just know that it is the hardest job in the world if your doing it right.  Just know that that person needs to depend on your for everything for a long time and it is the most special feeling in the world.  Heck yes it’s hard but it is unbelievably rewarding and you have a chance to raise your child in YOUR own way.  Just make sure your  being responsible and realizing your child has so much potential that can change the world for the better… or the exact opposite.  Choose wisely and more importantly love that little human with all of the love you are able to conjure each and every day.  Thank you God!

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Sometimes I just need to vent.

I can’t believe things are happening so fast with the babies!  Literally every day things are changing and it makes this job by far the best job I have had in my life.  And that actually means a lot because my work history varies from, working at an ice-cream company, to a go go dancer,  a legal assistant to a makeup artist, and this is just to mention a few.  Originally, these kids were the reason for my premature grey hair they are now the reason for my daily smiles and laughs that I have all day

Eidan is such a big boy!  He is repeating words on a regular basis.  His favorite words as of today are, circle, sit down, sissy, daddy, mama, and Shana.  His communication is incredible and his tantrums can be either prevented altogether or resolved with a reach out for him to hug me, I console him and I say, “all done?” and he then repeats, “all done” and walks off.  He really loves his sissy and that makes me the happiest mom in the world.  I especially appreciate that when Eva comes and destroys anything Eidan makes, he just continues on without a hesitation. Oh my heart!

Now Eva has truly come a long way.  I have started experimenting for a few days now, gravity feeding her instead of using the pump and I am amazed.  She is now being fed for only 20 minutes instead of a miserable hour and a half, not to mention having to vent her is little to none now.  I ACTUALLY PUT HER TO BED WITHOUT HAVING TO VENT HER TONIGHT FOR THE FIRST TIME IN EVA HISTORY!!!!!  I truly could not see our lives without having to vent her until she was completely off of the tube but I now feel the day is just a few away.  This is kind of a big deal, simply because we have avoided taking the babies many places because it is very difficult taking everything, and having to prepare for venting her in public (which is alot harder than anyone can imagine).  When we did take them out we had an hour of a window to do something with them then we had to bring them home ASAP to keep them on their feeding schedule.  Now we can actually go out and let them enjoy this beautiful world!  Oh my, the possibilities!   For anyone who doesn’t know what venting is, it is when you have to lay the child on the floor and open(release) the gtube extension into a tube to release any built up air in the belly because she is unable to burp by mouth, so essentially it is like burping her just through her g-tube.  It needs to be done because the air will build up and cause her to wretch, which is uncomfortable for anyone, especially a baby.  

Tomorrow Eva and I will be having a girls night… just kidding, she has a sleep study at the hospital from 7pm until 7am.  The study will determine if she has sleep apnea. If she does, the study will determine how bad it is, and the ENT will either suggest surgery now, later or never.  I am hoping we will be able to sleep with no problem and we will be home in time for breakfast.  Daddy will be having a boys night and party all night! JK, until 7:30 then lights out.

I am so proud of our little family.  Especially my husband.  He has been working really hard for us.  He has been working extra jobs galore and I rarely see him throughout the week.  I always knew how blessed I was to have him but the fact that he picked me has always made me question his sanity.  He’s such a badass, even though he gets on my nerves and vice versa.  I must have done something really awesome to have ended up with him.  Thank you Lord!

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My “summer”.

My 5 week math class finished yesterday and I am proud to say I got an A.  I was sure that I would end up with a B, but apparently I got a 100 on my final, so that bumped my grade up tremendously.  I had a love hate relationship with with that class.  I met some really great people who all thought I was in my mid 20’s which was awesome, and my teacher was amazing, but my nights and “down time” was filled with non stop homework and studying.  I didn’t just want to pass, I needed to pass with an A and more importantly I desperately wanted to understand it.  For the most part I feel like I learned a ton, but the best lesson learned is to NEVER take another math class in the summer.

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Me and my new “bestie” Jaret.  We were basically the original cool kids before we allowed a few more in our club.

I’ve started celebrating my “summer” with a doctors appointment for Eva at the turners syndrome clinic.  She won’t be needing growth hormones yet because she is growing well so thats amazing news!  Next week will be my only week of summer, before my philosophy class starts.   Bet your behind that my week is already booked with doctors appointments and a sleep study for Eva to determine whether or not she has sleep apnea.

On a lighter note, it is absolutely an honor to watch my little ones grow and show me something new that the’ve learned everyday.  Both Eidan and Eva are starting to go pee pee in their potty regularly now, and Eva has taken it a step further going poo poos in the potty twice already!  Eidan is taking up a storm and Eva is not needing to be vented nearly as often as before.  More importantly they are playing with each other more and more everyday,  and they also sneak hand holding once in a while.  They make each other laugh just by a look and they chase each other almost non stop.

The fact that Eidan and Eva have each other is probably the biggest blessing they each have.  To be honest in the beginning I selfishly though to myself how I wish I had them separately so I could give each of them more attention but I can’t help but realize now that what they have is much more than what I could have given to them.  Its times like this when I see how perfect Gods plan is ALL THE TIME.  Its funny how we see things in perspective after the fact, yet when times get tough again (because they always do) we will once again forget that God has everything set up perfectly (just like before).

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Does it ever get easier?

As a mother with a child with special needs, I have to know now, does it ever get easier?  I can handle the medications, I can handle the therapies that come six times a week, I can handle the spoiled behavior that she learned being in the NICU for the first five months of her life, and the same spoiled behavior fifteen months after being discharged… shoot, I can handle both babies having a breakdown at the same time now.  The one thing that I can’t handle is the surgeries… I can’t handle the weeks prior, I can’t handle the week before, I can’t handle the day before, let alone the day of surgery.

I think I’m always fine but my anxiety manifests in ways my mind can’t control.  Physically the stress takes over my body.  All of a sudden theres something sitting on my chest, preventing me from taking a complete breath.  Just as abruptly my eyes fill with tears, I start making an ugly cry face and I can’t stop from sobbing, not to mention to hide that from the twins is a challenge, God forbid they see my ugly cry face.  Thats something you can’t forget.

I try to keep busy to prevent myself from imagining the “what ifs”.  Leaving me in a state of panic every time I think of it because every surgery comes with complications… of course it does, why wouldn’t it?  Your going under anesthesia, your getting cut open, in this case theres going to be a foreign object put inside, theres the hope that the surgery fixed the problem, theres the pain, and the recovery which is the hardest part.  Theres also the fact that all this stress is put on my 20 month old daughter.

Is she used to it by now?  This is her fifth surgery, her fifth in her 20 months here on earth.  Her two heart surgeries, the fundoplication/g-tube surgery, the surgery to remove her cystic hygroma and now the surgery to fix her fundoplication and repair her hiatal hernia.  Every one just as stressful as the last because her syndrome makes things a bit more complicated for the doctor.  Every one leaves me just as brokenhearted as the last because I can’t do anything to take her pain away.  Every single one leaving me more distressed than the last because as I get to know her better and as I watch her grow and learn and persevere despite the odds it gets harder to know life isn’t promised for anyone of us, including my children.

So should I be used to it now?  Could I ever get used to it?  Will we be able to go for longer than a year with out a surgery?  How about five years? ten? twenty?  Will she be able to live a “normal” life with out having another surgery right around the corner?  We won’t ever know ahead of time, but I can say it is an honor to be the mom of a very special set of twins.  I pray that they always strive to give glory to God and are able to see the positive of everything that happens in their lives, despite how difficult it may seem at the time.  I pray they always take care of one another and love each other unconditionally, and I hope with all my heart that they learn to show their affection more kindly.  For example, I hope Eidan learns to hug his sister more gently, instead of pinning her down on the ground and I hope Eva learns to use a softer hand and touch her brothers head, instead of hitting it with all she’s got.  Theres no doubt they are fighters, in every sense of the word.  Amen.

 

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The hardest job in the world.

WHEN PEOPLE SAY IT’S HARD BEING A MOM, THEY AREN’T BEING ENTIRELY TRUTHFUL.  What they should really say is that it’s trying, demanding and lonely.  The “age of the toddler” are always trying you, but it’s what they do, it’s what they are supposed to do.  It is demanding not only on your time, but on your mind and body, so you feel like your going crazy repeating yourself over and over, as well as your whole anatomy is falling apart.  It is lonely because I think after you have kids you realize the number of your friends dwindles down to a surprising number.  Things just change, you change, your friends may change, or they may not and therein lies the problem.  After I had the babies, my everything changed, including my manners, my attention span, and my tolerance for bullshit.

THE HARDEST PART I think is feeling like I am alone even though am married and I have two little ones with me at all times.  I mean at all times… to get a glass of water, to go to the bathroom, I look over and my two little trolls are always there.  My husband on the other hand works really hard, sacrificing his passions at the moment, and that just that fills my heart with love and sadness.  I am grateful I am on this journey with him because I can’t imagine doing it without him, and even though we don’t see each other much he still makes me laugh and angry within a minute of conversation.  Now thats special!

WHEN YOU BECOME A MOM you become invisible to the outside world, unless your blessed enough to have someone who calls YOU a friend and keeps YOU in the front of their mind even though you have nothing to offer at the moment.  Because when your a mom everything you have to give is to your children who gave you the most important gift, your purpose.  If you have a friend that is able to know their place in your new life and still want you around… well, those are the friends you know you will keep in the front of YOUR mind when you are able to offer more.  Thank you God for this eye opener.

 

My sweet Eva.

My sweet Eva.

I can’t promise that this surgery will be your last, as a matter of fact I know it won’t be.  You will need to have another one on your heart sometime when you are a young woman, that is if your heart doesn’t tell us that it needs to be intervened sooner.  Until then we will be focused on staying on top of every doctor/specialist appointments.  Yes my love, other girls that have turners syndrome have no signs or symptoms of it, but don’t forget that some girls won’t be able to take their first breath and you did, but it came with a price.  Some girls fight to have a better body, you fight to keep yours.  Some girls fight to not have their hearts broken, you fight to keep yours beating.  You have had to fight harder than most to live so don’t ever take that for granted.  After this surgery you will have another battle scar so wear it with pride because some girls care more about not having an imperfection but your “imperfections” perfect you.

Don’t loose that fire in your spirit that drives your mommy, daddy and brother crazy.  We know that same fire is the reason we have you today.  Don’t loose that funny laugh that forces you to tuck your chin in because we know you deserve to laugh after everything you have gone through.  Don’t loose that sweet smile because you light up our days knowing you are with us and you didn’t have to be.  God put us all together because He knew we needed each other, and we go through all these hardships because He knows we need Him, we always will.  You are never alone my love.

My sweet love, you were born with turners syndrome, but that is not who you are.  You are not a syndrome, you are not fragile, you are not a sad story.  What you are my sweet love, is a Devereux.  You are a warrior.  You are unbreakable.  You are solid and you are made with the unyielding love of our Father Lord Jesus.

Where did the time go?

As I get older I start to understand that my parents weren’t perfect, aren’t perfect nor will they ever be perfect.  I have accepted that they weren’t perfect already, my childhood and attitude could have told you that.  But I wasn’t prepared to realize that they still aren’t perfect and the mistakes they made when I was a child are still mistakes they continue because this is who they are.  So that leaves me with the question, will they ever be perfect or will they ever try to make right all of their wrongs?  Is it too late?  Probably, but now that I have my own family I want to learn from their wrongdoings and give my children much more than I ever had.

All of these thoughts have come to me now that I am 32 trying to play catch up with school and trying to give my children an example of how important it is to have an education.  I left school in the 10th grade because I had no direction or desire to complete it.   I had no idea that I was able to make only A’s (and one damn B) in college, but this is because the D’s and F’s would follow me through high school because you have to be in class, and study to make anything more.  My kids have to know that if they don’t go to college after high school, life will grab hold of them and make it that much harder to go back.  I will remind them that going to school now as a wife, and a mother is no luxury.  They will know I studied while they napped, and slept at night.  I will let them know that I never studied while they were awake because I enjoyed every single waking second with them.

What do I do now?  Nursing school was my dream but now I feel like my body is falling apart and I question if this is still the path for me?  Now that I have finally found my calling I am having back issues, wrist issues and anxiety.  Who knows what God will put in my life but I do know one thing.  I will not stay stagnate and conform to a life that does not sit well with me.  I will live up to my potential… Yes, I am a decade behind, but better late than never right?

I feel like I have already made so many mistakes.

The babies are 18 months old and I can’t help to feel like I have already let them down, despite my effort to never do so.  This week Eva had to go by ambulance to the ER because of a high fever and because she was so inconsolable her lips were turning blue.  While we were waiting for the ambulance I had both babies in my arms and I started to cry exactly like them.  Eva was in pain, Eidan was scared and I am their mom and it is my job to help them and I couldn’t.

Through an X-ray a hiatal hernia was officially confirmed and now she needs another surgery to correct that as well as to fix the fundoplication that she already has.  The same fundoplication that and has given us problems since day one.  Even though its been rough we have finally found a system that works for us and were going to back to square one right after this next surgery.  We don’t know if this time things will be better, or worse.  I can’t help but feel right back in that dark room I was in months following the birth of the babies.

I am tired of seeing her through pain, I am tired of being away from my son, and I am tired of only seeing my husband when we switch out from the hospital.  I don’t want my daughter to have yet another battle scar, I don’t want to miss out on my nightly rituals with my son, I don’t want to have to update my husband or get updates of our daughter, depending on who’s with her that day/night at the hospital when she has to go in again.

I don’t know how I am going to tell her how incredibly strong and how fucking unbelievable she is despite every one of her imperfections when she becomes a teenager and she starts to notice.  I don’t know how I will tell her that God made her heart the way he made it in perfect timing and for perfect reasons.  That she was born at a time that it could be repaired because he knew the love in her heart was too much a regular heart could handle.  I will tell her that scar on her side from that procedure is beautiful.  The g-tube and fundoplication scar was put there because she had to learn to eat by mouth later in life, because during the crucial period that babies learn to drink out of the bottle, she was too weak and needed to focus on healing and growing to get out of the hospital to be back with her brother.   I will tell her as soon as the g-tube is taken out and after a scar forms that it is beautiful and I couldn’t wait until I saw that one created.  The cystic hygroma was the first thing the doctors saw when they realized there was an issue when she was still in my belly, and it was a reminder of the long hard road for all of us.  When it was removed that reminder that every doctor said she was not going to survive was gone with it.  That scar is my favorite and I will tell her its beautiful.

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I will always tell my son that he is just as special as his sister.  I will tell him she is no more important than him because I know he will feel like that.  I will tell him I recognized at a very early age that he is very perceptive and extraordinary.  I will let him know I tried very hard to give him extra time after Eva goes to bed so he knows he’s important too.  I know he will feel like she gets more attention sometimes because of her health but I will remind him that she is alive because of him and he is alive because of her and that is a bond that is more precious than any person can describe.  I will remind him that he is always her protector and God planned this perfectly for His purpose.  I will forever thank him for his patience, love and sensitivity that reminds me so much of his father, and is reason why I fell in love with his father in the first place.

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Thank you God for every day and every battle.  Don’t let me forget any of it.