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.

 

 

 

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.