There is no one ANYTHING fits all, in parenting a child with special needs.

I have boy/girl twins and that by itself is a challenge, as you can imagine.  Throw in your daughter having special needs, well… that becomes unimaginable for many and quite honestly in the first year of their lives it was for me too.  I am not sure how I survived, quite literally.  Fast forward to today, when they are almost 2 1/2 I know how I did it.  It was with God and my love for these two beings that were created in my body.  It was an honor to be chosen with this difficult task, and having twins in these circumstances I am able to appreciate the differences in having a “healthy child” and a child with special needs.

First, it is times like what I am going through now, when my daughter has had a fever for almost 3 weeks and blood work, a stool sample, and a urine analysis all came back negative, that I feel completely useless.  Not being able to treat your child and not knowing what is going inside their complicated body is enough stress to turn your hair white… Trust me, I know firsthand.  Holding your child when you know they don’t feel well while they are burning up and just thinking is their going to be another surgery?  Another diagnosis to add on to the many already?  Or is it worse?  Your mind goes to worst case scenario because that is what you are now conditioned to think.  It also trickles over to your “healthy child” that when they get a sniffle you over analyze because that is what you are trained to do.

For my son, I know the usual symptoms of a child that is getting sick, and thanks to WebMD I am now my own doctor, but daily I am looking for these things on my daughter, as well as, is she retracting more than usual?, is her edema getting worse?  How is her heart?  Is she getting enough fluids through her g-tube?  Which specialist should I make an appointment with for her and who’s going to watch my son if I have to take her in an emergency and my husband is at work?  Many people will never understand and that is ok.  Not everyone is supposed to, but it is my job to stay on top of their health, even when I am sick myself, which happened last week.

I recognize that while there are some children in the special needs spectrum don’t have as many issues as my daughter, but I also recognize that there are many children that have even more.  I am grateful with what I have and I know these struggles are helping shape both of my children to be warriors that actually care about people other than themselves.  If I could do it all over again, I absolutely would and if I could take on more children with special needs, I would do it in a heartbeat.  I was created for this and I am so glad I finally found my purpose through these two.

So when you see a child with special needs I want you to understand, we know as moms that you see our child through a different lens, you don’t understand off what diagnosis that have, what some of the equipment they are using does, and even why they may look “different” and of course I can only speak for myself here,  but ask a parent of a special needs child in a respectful way if you really want to learn, and just don’t stare.  If you ask me education is key in spreading awareness, and you may not get the same openness by some parents because they may be more reserved and possibly be more sensitive to certain approaches and terms that some people use that can be offensive to some, so just try to be considerate about those things.  You must also understand there is nothing sad about our children, and the only sad about a situation like this is if a parent didn’t care about their child, but that applies to all children.  Another thing, these parent that care for these unique children have more than likely experienced valid fears in loosing their child through sickness, surgery, simply birthing them or they could be told that they are going to outlive their own child so keep these things in mind.

You may not have been chosen to have a child with special needs, or even a family member with special needs but be mindful on your body language and approach (if you so choose to do that).  Show them respect and appreciation, because as it even applies to all parents, it is easy being a parent but it’s really hard being a good one-and throw in all of the extra elements that I mentioned, well that parenting status is the highest of them all, and chosen for just a few.

 

Custom made hearts are more common than you think.

img_2883When I explain to anyone Eva’s medical issues, as soon as I mention heart surgery, the expression on their face seems to get more despondent .  There is so much of  a respect and fear for the heart that people tend to understand immediately how serious your child’s condition is if you mention they have a heart issue.  With that being said, I don’t think people know how common it is for children to be diagnosed with a heart condition.  For example I have 2 childhood friends that both have children who also had complicated heart surgeries (one just a few days ago) at a young age. Because of the complex properties of the heart, all three of our children have had different interventions and thank God all three of them are doing well.

As I was driving today to visit one of those friends (mentioned previously) at the hospital so I could finally meet their little one after he just had open heart surgery, I almost turned around a few times because my anxiety of it all almost took control of me.  The emotions I felt were taking me back to when Eva was having heart surgery herself and my sadness overcame me.  It was overwhelming, but I followed through and I am so glad I did.  It was nice to see how incredible her son was doing and to put a face with the many, many, many prayers I sent up for him.  I was also reminded how much I want to go to nursing school.  I don’t think I ever felt so passionately about a career choice than this.

Watching my friend, a new mom, experience something that most parents will never have to deal with, (i.e. the extended hospital stay, cords tangling, monitors beeping, Doctors and nurses being obnoxiously loud in the room where your baby is trying to nap through the pain, X-rays, echos, sutures from a fresh open wound) makes me realize how truly hand picked we are for these very difficult times.  We have to hand over our child to a surgeon to cut them open and repair a heart you grew yourself, you have to let nurses watch over your child and hope they don’t miss any red flags and we have to trust God that his plan is one that shows mercy to your child.  After an experience like that you learn to appreciate your boring, repetitive life at home, as ridiculous as it sounds.

As I left the hospital I went into an elevator with a kid (maybe in his 20’s) that had a artificial heart in a backpack.  Want to talk about putting things into perspective.  I wanted so badly to talk to him because I am 100% sure most people are intimidated by his situation but all I got out of my mouth was, “have a good day”.  I was so disappointed in myself because I wanted to tell him how amazing and special he is because he lives in an time where his unusual circumstances allows him to walk, talk and live!  All I can think is God has such a purpose for him and all of our children.  Especially our children that require medical attention who also live in a time where these medical advances have allowed them to live a longer life, and they wouldn’t necessarily have had that option, just 50 years ago.

I am so grateful for Eva and her experiences, because while she went through them physically, I went through the same experiences but on an emotional level and I wouldn’t trade that for the world.  I have become stronger, more aggressive (especially in situations where I need to be for my children) and at the same time softer.  I have adapted to situations where some people think is impossible to overcome.  You never know what you can survive from until after the dust settles.

NEW YEAR- Brand new goals.

My oh my.

I will have to start off by saying 2016 was uneventful in comparison to our past two previous years, and it was great.  So while most people hated last year, I will have to be completely honest and say, I loved it.   Eva only had one surgery, that was to correct her fundoplication and repair her hernia, other than that she has been out of the hospital, praise God!  Eidan did have a scare that we are unsure of, but we are still following up on it and he seems to be fine, God willing.  My husband is safe, and unfortunately nowadays police officers safety is non exsistent.  Last but not least I am working on my business, peculiarly perfect,  which should be launching this month and I am thrilled!

GOAL 1– Get the company up and running by January 15.  Peculiarly Perfect is a clothing line, for children with special needs and all children alike.  The purpose is to bridge the gap (that us parents that have children with extraordinary needs knows all too well) between our children and other curious minds.  There will be two collections launching, one collection will target children’s specific needs, and the other  will be for children to support anyone that is different.  We are all so very wonderfully uniquely made so the faster our kids know that, the better.  I am excited to have a section on the website that features a spotlight child monthly to educate people about our children that have these differences and also to remind everyone that what they have does not define them, it is simply a part of them.

The babies toddlers are taking so many new turns that it has inspired me to also start an instagram account for them (GOAL 2), where I can post daily updates and possibly reclaim my own personal account for myself.

GOAL 3– Be a better wife, mother and build a better relationship with the Lord because Lord knows I need it.  I am doing this with the help of a therapist and this is something that should have been done a lot earlier.  I have allowed a lingering of bad thoughts consume every part of me for a few years now, and I am so ready to throw that shit out of the door.

GOAL 4– Attempt to do a weekly blog…. I said attempt.

I am so excited about this new year, but as that excitement wears off in a few weeks I have chosen to be more excited about every day I have.

Less phone-more attention to everyone especially the kids.  Less talking- more listening.  Less fighting-more loving.  Less “the office”-more “the office”, who am I kidding, I love Dwight K. Schrute.

 

 

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.

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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Hello blissful, naive me… from only a day ago.

Oh boy… After enrolling in a 5 week math class I couldn’t help but realize that I bit off more than I could chew.  I thought that since I was smart and charming I would be able to make it through with an easy A, but I was wrong… way wrong… too wrong.  I am not sure why I didn’t think back to my past and remember that I didn’t make it past 10th grade…. so past that grade level, I never learned.

So here into my 3rd week of class I am struggling and using every moment of down time, i.e. when the babies sit down to eat, “nap” and sleep at night, to study and do my homework that consists of about 2500 questions, roughly.  Yes, you read that right… 2500 math problems that are due on the last day of class, along with the extra credits, which of course I am doing. So I’ve been forced to say goodbye to my non existent social life… my social media social life of stalking cute babies and watching the world fall apart.

Oh no… it gets better, to make matters worse…. the babies are officially in their terrible twos.  I thought, up until yesterday, that babies were already there but oh no….  Today Eva learned how to take off her diaper and Eidan has figured out how to get out of his crib.  They both have increased tantrums from a few a day to a billion a day, the works, the screaming, kicking, and crying… on command.  The experimenting phase has also begun… Eva with the, I can get on the couch without your help but I refuse to learn to get down and hope mom can get to me before I get down head first… and Eidan with the I am going to get on the slide however I want and let me jump off from every part, because I want to… and I am going to look at you and laugh at your fear face mom.

Oh a happier note, they are communicating more and they both know every letter of the alphabet.  We are now leaning numbers and colors.  I am extremely proud of them because I’ve read that kids don’t learn the alphabet until 3-4, and they are a month shy of 2.  I am working with Eva again on her eating, and Eidan is getting really good at the potty thing.  Man, they are amazing and I wouldn’t change my life for all of the money in the world.  THANK YOU GOD!

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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