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.

 

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While y’all were getting ready for the Super Bowl LI, I was collecting samples of my daughters stool.

It all started Wednesday, when my daughter had a slight fever and because of her past medical issues I was already on alert.  Friday her stools looked a bit different, kind of a maroon color and since I am in control with what she eats through her g-tube and there would be no reason for it to be that color, I called the Dr.  We were able to get her in that same day and the doctor confirmed that there was in fact blood in her stool.  Eva had to get her blood taken, and the doctor requested that I bring in a fresh sample of her stool for testing, so that is what I did this Saturday morning.

Per usual Eidan and I got up first, I made breakfast, Eva woke up, I fed her while Eidan ate, and as soon as I get to take a bite of my food Eva poops!!! I was on it… I changed her diaper, took the 7 bottles that was given to me to scoop poop into (and did that task like a pro).  Put socks and shoes on the kids and didn’t even bother changing their clothes, I just put a robe on them and ran out the door and drop off the samples.  From the time that Eva did her business, I got the sample to the lap within 30 minutes!

Now you may think, “what’s the big deal?” Let me just inform you that I just started taking the kids out alone two weeks ago.  We’ve been to my moms twice and today for the first time the kids went to my sisters.  Every time I get them dressed, down the stairs, into the car, to our destination and back, it is a victory!  This year I promised myself that I would get them out more and because dad works a lot, I had to figure this out on my own.

As I was driving back home from my sisters, I realized that I am so glad I got all of my partying days out of my system at a young age.  The fact that the Super Bowl is here in Houston this year you can’t help but think of the famous people in town and the crazy people running around the city trying to stalk them.  Not me… I enjoy being at home with my babes and going to bed at a reasonable hour.  I am more interested in staying on top of my daughters health, than the makeup trends I used to care about.  I am more excited watching my son sing songs that he memorizes, than being distracted with things that really don’t matter in life.  If you are about that life, you go girl (or guy)!  I have been there, done that and did it again.  I just never though I would ever get to a place where I don’t even have an itch to go out at all.  I enjoy a simple life and if I could do it all over again, I would… I totally would if it got me to exact place where I am at today.

So while we won’t know more until next week, I can only pray that it isn’t a big issue and won’t require surgery.  Since she is still retching more than 2 years after her fundoplication and almost 1 year after her hernia repair (probably caused from the retching) and fundo redo, I can only hope this current issue helps us also find a way to correct this issue.  I will leave one hint of advice to any parent…  if something doesn’t feel right about your child go with your instinct.  The fundoplication is the one surgery my husband and I did not feel right about and ultimately it had become our worst nightmare for our daughter.  It is always better to be safe than sorry, especially for our children.

 

 

 

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.

 

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.