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.

 

Can I have more hours in a day?

 

I wear many hats in this life, I always have.  I am a wife to an awesome man, a mother to two sassy twin toddlers, a cook, or shall a say a slow cooker specialist, a house cleaner (debatable), a student (right now I am on a break until next semester to continue my prerequisites so I can work towards my nursing degree), an actress to my children that sometimes need a bit of extra in their lives… and more. For some reason that just wasn’t enough so I most recently started a small business, so add business owner to that list.

I never understood how people at a young age know exactly what to study, what career to follow, or just know what their purpose in life is.  How is it possible that at 33 years old I just found it and how exactly am I going to juggle all of these roles at the same time, without loosing the importance of being a good wife and mother, getting good grades at school and creating a successful business?  Naturally when I sit down to think about it I get upset that I wasted so much time, but only one thing gives me peace, and that is knowing how could I have started all of this before when my purpose wasn’t revealed to me until after having my kids.

So why start a business?  I’ll tell you… After having the twins and with all of Eva’s medical issues, I realized that people were first intimidated by her, and it makes sense because so was I!  As she got older and around more people, I started to notice an unusual look people would give her and I didn’t understand.  But one day a very young girl, at a Barnes and Nobles came up to Eva and myself and asked, “whats wrong with her?”  That comment confirmed my suspicion that people see her differently.  ***Sidenote, to us she looks “normal” and beautiful obviously because she is our baby grrr.**  The only thing I could think of that may get peoples attention would be her webbed neck, which is part of her syndrome.  Well, I was so livid that the little girls mom said nothing so I went off to cry with her in my arms in between an empty rows of books.  I was sad and confused not understanding how a parent could not correct their child.  I now know that people don’t always know what to say, or do and I get it.  Especially because you will get different answers from many parents that have children with special needs, but if you ask me I would say, just ask in a polite manner because staring is not appropriate in any situation.  I must admit, I am now grateful to have that experience because I knew something had to change.  It made me realize that I  will not always be able to protect my daughter, but I can raise her to be a strong woman and help many people understand that everyone is different, some just don’t hide it and to me, that is enchanting.

My business, peculiarly perfect, is a clothing line with a purpose.  It was created to bridge the gap between children with special needs and curious minds.  I started with just two shirts, one for all kids and another is for kids that have a g-tube.  I have two more designs coming out next month and much more to follow.  I will have shirts for kids that have special needs with a clever design proclaiming their differences, instead of hiding what unique qualities they have.  There will also be shirts for all kids to show support.  More importantly I will be educating the public with a tab on my website called, spotlight child!  This is where there will be a child’s story featured quarterly, along with information  on their condition so kids and adults can become educated and eventually get more comfortable with people who are different than they are.



Will I be busier than before?  Yes.  Do I think its worth it?  ABSOLUTELY!  I thank God I have some direction….. if only there were 48 hr days, instead of 24.

 

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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Many firsts for our first year together.

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Bonding through biting.
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Bonding with kisses and playing.

 

 

 

 

 

 

 

 

I forgot to mention in my previous posts that everything we went through from July 2014 (two months before I gave birth) until May 2015 (when the twins were 8 months old) we lived at my husbands grandmothers home (his grandmother was awesome to us, she helped us out when we were at our lowest and we are truly indebted to her).  We lived in a small room where I did everything in, and I mean everything in there.  I made it my own home.  If I left the room, I literally ran to the kitchen when the twins were taking a nap.  The first time I actually decided to leave them for more than two minutes, I went for a walk  around the neighborhood while Josh watched them, and that is when Eva decided to do her first roll over.  I think at that moment I realized she was totally daddy’s girl, and still is.

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Our room/home/living room/bedrooms/dining room at grandma’s.
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In our own home… the living room.

 

 

 

 

 

 

 

 

 

By the time we left to our own home we were able to stretch our legs and Eidan finally got to perfect his crawling.  Eventually Eva figured it out too and this is when things began to get REAL!  They were tag teaming me every chance they had, and they still do.  After a few months of living in our own home Eva’s most amazing nurse moved away.  She was with us for a few months and I trusted her with all my heart.  We tried another nurse but it didn’t work out and something told me I could do it on my own and I have never looked back since.  I get to watch them grow before my very eyes and see them process and learn something new everyday.  Eva does however still have physical therapy and occupational therapy that comes twice a week, and thank God for their help.  I think the gap between Eidan and Eva’s physical achievements would be much bigger if we didn’t have therapists for her.  You need to know the edema she has on her feet is substantial and she’s figuring out how to walk on rounded, instead of flat feet.  It will get better as she grows but until then she has her own way and it is absolutely impressive to watch.  She is unbelievable.  Eidan also it truly something to watch as well.  His strength is remarkable, like a little ant. Im pretty sure by next year he will be able to lift me up with no problem at all.

 

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Eva learning how to crawl.     
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Eidan perfecting his crawl.

 

 

 

 

 

 

 

 

 

Honestly, I always worried about the babies loosing their twin bond because of how long they were separated but after Eva returning home after her second heart surgery, the look they gave each other eased my worries.  Since then their twin bond has grown exponentially.  For example they both move at the same time, multiple times throughout the night… and they sleep in separate rooms with their own sound machine.  They also have developed their own language that is still growing everyday, leaving me out of the loop.  I sometimes wonder if I had had them separately would they have been better off because I would have been able to give them more one on one attention.  After months of really reflecting on it, I know their bond is more important.  I think Eidan pushes Eva more than I ever could so I set time apart when one is asleep and the other is up to give them the special love and attention I think they need on an individual level.  Thank God for His wonderful plan and intricate tests for us all.  Not only am I thankful for our twins, I also know I could not have gone through this experience with my sanity intact with anyone other than my husband.

 

 

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Our first Christmas together.
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Our first Halloween together.

 

 

 

September 2, 2014

On September 2, 2014, I was 34 weeks and 5 days pregnant, going in for my weekly doctors appointment when she told me that not only is baby girl still not growing and having unusual heart issues but baby boys heart is doing something unusual so today is the day were taking them out.  The only thing going through my mind at that point was after today I will officially be a mother.  A mother to possible twins, assuming baby girl does well and at this point also baby boy.

After a few hours of being monitored it was time for the whole sha-bang.  They took me into the white room, where I got my epidural and soon after where there was a white sheet covering my belly and below.  As soon as the doctor came in, I knew it was time.  Dad was able to come in and there they go cutting away.  I remember I was freezing to the point that it distracted my mind from everything that was going on and thats probably a great thing.

They were born 10:23 pm and 10:24 pm.  Our son Eidan came out first weighing 4.5 lbs and oh my goodness he was a dream come true.  He was having heart issues because he was wrapped around his umbilical cord four times.  Thank God the doctor took him out that day.  Our daughter, Eva weighed 3.5 lbs and was hauled away and I didn’t get to see her until I was in recovery where they brought her to me and informed me they would be sending her to another hospital the same night.  Comes to find out on the Apgar score she rated between a 2-3.  She wasn’t doing the best but she was alive and she literally came out fighting like a champ.

When I first saw Eva, she was in a incubator and it was very difficult to see her without wondering what her future was going to look like.  She was very puffy all over with severed edema  on her hands and feet.  Under her head there was a pillow of skin (called a cystic hygroma) that sat under her head.  We knew these things were there because it is part of turners syndrome and thanks to the ultrasounds it gave us an idea of how large it these things were, but nothing could prepare us for how it looked like in person.

When I went into my room after recovery I was left exhausted, physically, mentally and emotionally.  As I look back I realized something special…  I feel like if Eva wouldn’t have survived the pregnancy Eidan would have either, and, if Eidan wasn’t having trouble with his umbilical cord and forced us to have the c-section that day, then I believe Eva wouldn’t have been able to survive much longer.  So in a way they both saved each other.

 

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Eidan Knight Devereux
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Eva Kirley Devereux

 

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.