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.

 

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.

 

 

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!

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 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.

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.

Eva Kirley Devereux

Eva has had an extremely challenging Journey already in her now, 18 months of living here on this earth.  To best sum up her past and current health issues I will simply type out the list of her most recent clinical summary along with links to help explain what each are… Turners Syndrome,SVT (supraventricular tachycardia), Nissen fundoplication (with gastrostomy tube placement/g-tube), premature infant, PFO (patent foramen ovale), pericardial effusion, mitral valve stenosis, milk protein intolerance, lymphedema, lymphatic malformation (cystic hygroma), IUGR (intrauterine growth restriction), hydronephrosis, esophageal reflux, dysphagia, cystic renal dysplasia, congenital stenosis of aortic valve, coarctation of aorta, bicuspid aortic valve.

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Baby Eva.

Little Eva was in the NICU from the day she was born, September 2, 2014 until January 21, 2015.  Before she left she hospital she had her first heart surgery at 8 days old, she had a fundoplication/g-tube surgery at 4 months old and countless X-rays, scans, IV’s and needles.  Before she left the hospital I am pretty sure she thought many of her nurses were her mom instead of me.  Yes, I went every day (not including the week I was sick and unable to see her) but what I failed to mention was I that I was only able to stay a few hours each day (unless she was having surgery where I never left her side), but my time with her in the hospital was not enough.

Her first Heart Surgery was on September 10, 2014 and it was to repair her aortic coarctation with a subclavian flap.  Her h/r Her surgeon took 8 minutes to do the repair, boy was he fantastic… and a bit strange.  As soon as they put her in a PICU room so she could be monitored closely, her nurse gave me a bumblebee pendant with a poem on it.  That was the first time I allowed myself to cry since the babies were born.  I cried for so long when I was left alone in the room with her as she was fighting so hard.  My emotions were held in for so long I could have cried for a for days, or even years.

Her balloon angioplasty in her heart (because of a recoarctation) was November 18th, 2014. This procedure was not supposed to be a stressful procedure but we are a family that doesn’t play by the rules.  She developed a pseudo aneurism and she needed to be monitored in the PICU for a few days.  Because of her syndrome, it effects her tissue and makes her very unpredictable during certain procedures.  She healed nicely but it was mentioned that this was the first time her doctor had seen an aorta need to be intervened so soon after a surgery.  I believe it was at this point that I realized that when any doctor told me not to worry, maybe I should.

The fundoplication/g-tube surgery was mid December, 2014, and it was the one surgery we hesitated on doing.  Nothing about it felt right and looking back we wished we would have looked at other options.  Her healing for this surgery was a nightmare.  She was in pain much longer than they expected and the primary concern for her having this surgery, was her “reflux”, which was still there even after the surgery.  You can imagine our anger and guilt that followed and we still carry with us after this disaster.  There is a small percentage of people that have had a fundoplication, develop a complication called gas bloat syndrome, that prevents them from burping on their own…. well yes, that also happened.  She still struggles with this currently and we have to vent her g-tube often.   That means we have to allow the gas from her stomach escape so she doesn’t feel uncomfortable and start gagging.

Ironically just like her brother, a few days before she was to go home she apparently stopped breathing.  This traumatizing day was December 23, 2014, two days before Christmas.  Nobody was able to tell us exactly what happened, all we know is her nurse was holding her, she started crying and turned blue.  They had to give her air and she started taking breaths again.  After this ordeal I was in absolutely no rush to get her home, but little did I know almost a month later, she would be home with us trying to adapt to a life outside the hospital.

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Eva leaving the hospital, January 21, 2014.

 

 

 

Introducing…Eidan Knight Devereux

So Eidan was in the NICU for over two weeks and when we originally were planning on taking him home, he had an apnea spell (he stopped breathing for a little while so they had to stimulate him to get him to breath again, which happens sometimes in preemies) so that held him back a few more days.  They reassured me that because it happened only one time, it shouldn’t happen again, but as traumatized as I was I insisted on taking him home on a home apnea monitor for a month.  When they released him to us, I was so scared that I am sure the nurse who discharged him was concerned.  Shit, I was concerned.  He was so tiny and I had no idea what I was doing.

I was scared to change his diaper, bathe him, change his clothes, hold him, and leave him alone in the room, so I never left the room while I was home.  The only time I would leave him was to go see Eva in the hospital and then dad would watch him.  There was a very, very short list of people that were allowed to watch him when dad and I had to go to the hospital together during Eva’s surgeries.  No one was allowed to come over to prevent any of us from getting sick.  I was absolutely terrified of everything at this point of my journey.

On December 22nd Eidan had to have his own surgery on a very large inguinal hernia.  This hernia was the largest hernia many doctors said they had seen, (you can imagine our horror when they told us).  The only good thing about that surgery was he was one floor away from Eva’s in the same hospital.  That was the closest they had been since they were born, so for 3 days dad and mom finally caught a break… we only had to hop onto an elevator to visit each of them instead of me having to leave Eidan at home with dad to see Eva in the hospital, and then leave Eva at the hospital to go back home to Eidan.

Not to mention, Eidan had also developed hemangiomas  a few weeks after he was born. During one of his his doctors appointments they were concerned that he has a total of 11 which any more than 4 is cause to be concern for possible issues on a number of organs. At that point they also heard a heart murmur but praise God after having an echocardiogram it turned out to be something called an innocent murmur and the hemangiomas have gone away completely.  Despite all of the health concerns we had for Eidan it was nothing compared to everything his twin sister, Eva had to go through.

TWINS?

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This picture was taken a day before the pregnancy tests confirmed what I already knew.

When we got pregnant with the babies I knew the day after that I was pregnant.  I have not a clue how but I did, and I told my husband immediately.  Then when it was time for me to take the test we were snowed in.  So after two days of being stuck inside our house, and after the commissary was FINALLY opened, I scrapped the snow off of my car and rushed to buy the tests before I had to go to work.  When I got back I took a test and it was negative… I took the second test and it was negative and then I took a third test and it was POSITIVE!  I was excited/scared and in shock.  This was January of 2014 and the first pregnancy after my corrective surgery on my uterus.  I knew this could be the one… or  in this case the two.

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Because one is never enough.

After finding out about the pregnancy I ended up putting my two weeks at MAC on February 20.  I knew this pregnancy I had to take it easy this time.  Despite how much I tried to be relaxed I had some scares so I became that paranoid patient that called the doctor for every unusual thing.  And then March came along and we went for our ultrasound and as I looked at the monitor I saw two somethings, but I didn’t have the training to know exactly what I was looking at.  Then the doctor said it….. “Looks like were making up for lost time.”  I looked at my husband and his eyes looked full of fear and excitement.  The doctor confirmed, TWINS!  I gathered up my words and the only thing that could come out of my mouth was, a lot of eff words.  I mean a lot of EFF words.  I cried, I laughed so hard I sounded like a maniac.

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“Looks like were making up for lost time.”

The news came as a shock because neither one of us have twins in the family.  You can imagine as we called our family members to inform them of the unusual news, we had very interesting reactions.  We also celebrated with my first craving… Popeyes.  It took us a while to accept that we were pregnant with twins, I even found out that women over 30 and that are taller than average have higher chances of having twins.  Well in my case I fit that profile and God had big plans for us.  We even took advantage that on April 1st (April Fools Day) was our last day of our first trimester so we shared only the above picture on Facebook and the reactions were priceless.

 

Abortion, Miscarriages to Pro-life

ABORTION

I had an abortion.  That never gets easier to say and it never will.  I had an abortion long before finding out that I had a uterus that would not allow me to carry any child over the first trimester.  I found out this somber news in North Carolina after having a total of 3 miscarriages.  I made a choice to terminate a pregnancy that would have ultimately terminated itself.  That is a hard pill to swallow.

MISSCARRIAGES

Was God angry at me?  Was this punishment for my abortion?  Those were the thoughts I had after every miscarriage.  Every time we told people we were pregnant, we soon after had to tell them that we had a miscarriage.  Holy crap, the look of pity from the army wives that heard from the grapevine was just terrible.  It was almost embarrassing for me sometimes because I felt like I am a woman, I should be able to do this but I couldn’t do the one thing women are supposed to do.

I still don’t think I am completely over it.  The last miscarriage I had was right before Josh deployed and I suffered in silence.  I was so far away from my family and friends, but because of the distance I felt like they didn’t know me anymore, hell I didn’t know myself.  The one person I wanted or could talk to was on a dangerous deployment and I was so scared that I prepared myself (as much as I could) for him not coming home.  I was in a miserable place that a piece of me still lives in.

SURGERY

The surgery (uterine septum removal) that was September 2013 (one year exactly before the babies were born) allowed me to get pregnant after all of these heart breaking miscarriages. It basically removed a large septum in my uterus that did not allow the babies to grow and receive the nutrients they needed to survive.  The doctor mentioned that it was one of the largest he had ever seen (of course it was).  When I got out of anesthesia I told the doctor he was my best friend and when he told me my husband was there and that my husband was my best friend, I cried.  I also woke up in the middle of the procedure and told the nurse that I would do her makeup.  Anesthesia is such a strange medication.

PROLIFE

It is still very hard to accept that blood on my hands but it is there no matter how many times I wash it.  After having my babies I make it a point to inform women that it is a decision that will more than likely follow you for the rest of your life.  It is something that can’t be taken back and that child cannot be replaced.  I realized after having my babies that my babies were my babies from time of conception until the day I die.