Emotions may vary

As the pre-surgical consultation approaches this Wednesday, I can only imagine how put together I will be. I hope to have all of the questions I have answered and I hope that his plan is the same plan that I have in my head. I want to get this surgery out of the way and behind us so that my children and I can stop living in such a restricted bubble that I’ve created caused by fear of the status of her heart and health. I hope that we are able to wait an extensive amount of time until the next surgery and I hope that I have the right words to explain to the twins when the time comes.

I keep telling myself that I am fine and I keep myself as busy as possible to prevent myself from breaking down, to no avail. The thoughts that I am having are unlike anything I’ve ever had before. I am having overwhelming feelings of guilt that I brought this absolutely fascinating girl into this world and I have to ask her time and time again to go under a knife and correct parts of her body that I made inside mine. I don’t know why I can’t be the one to sacrifice my body for hers.

I understand that God chose us for this incredible and difficult journey for a reason. I believe he chose us because he knew we could go through this with grace and such strength, but I’m at a crossroads at the moment. I am weak and the closer we get to this procedure that I’ve only imagined for years, the weaker I become. I feel such fear this time because I’ve been waiting for this repair since she was born. This one is different. This one is big. This one is disheartening.

So despite the previous ominous words and tremendous circumstances, I am still not defeated. I am weak, but I will gain my strength again. I won’t give up hope for a great ending to our story and I won’t give up hope that God is with us every single step of the way. Having a medically complex child is not for the faint of heart. It requires so much extra tough skin and an unimaginable amount of trust in the medical field. But it also opens your eyes to how delicate this life is, and how many emotions you can have in one sitting… as you can tell from this post.

RESULTS

You know sometimes the unknown can be more frightening and painful than the outcome, even if the results you receive is the worst case scenario.  After tormenting myself with the “what if’s” about Eva’s echo results, I felt a big relief after hearing the unfavorable details of the current state of her heart.  It should be obvious that waiting for this day to come for several years was very difficult for me knowing that her heart was not in the best shape, so the news that she is being referred to surgery was bittersweet.

There were many signs pointing to the fact that it was time for surgery leading up to the appointment and at the actual echo it was clear.  The tech was stressed out doing the measurements of her heart.  When we finally got to speak to the doctor, she told me the sobering news and I cried.  I cried because I was scared, but also cried because I had been planning for that moment for years.  I was told that her numbers had increased to the point of confirming intervention, the left side of her heart was more hypertrophied than it showed before and the sub aortic membrane had enlarged.  One thing that is a good sign is that she is asymptomatic and she was not in an emergent state so we could plan this surgery instead of rushing into it and this way we could get the doctor that we want.

We have been told since she was less than a year old that she will be needing open heart surgery to correct a few things in her heart (she will be 6 on Sept. 2).  It is clear that this type of surgery is one of the most scary things anyone, especially a mother can hear but knowing that her heart will be that much closer to functioning better is priceless.  The cardiologist mentioned a few options for replacing her aortic valve including the ross procedure, which would be ideal but we will know more when we have the pre surgical consultation.  Regardless of what they choose to do I was told that it is a complicated surgery and will take the whole day, including sedation and other tests but the surgical part itself should be 5-6 hrs.  The recovery time mentioned to me was not ideal but her body will ultimately tell us what she needs and I need to respect that.

This will be her third heart surgery, but her first open heart.  She has had two surgeries for a coarctation in her aorta and both times they went through her back.  This will not be her only open heart surgery but I will not focus on that right now because there is no need to stress myself out unnecessarily.  God has been generous in giving me grace recently and I do not want anything to keep me from losing this gift.  I know that when I have the actual surgery date scheduled it will require a lot more of me to hold it together but until then I am ok.

 

 

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

 

Unconditional Love

My God, one second I feel good and hopeful and the next I feel so disconnected to everything.  I can say that the only thing I have any interest in doing is writing which is nice since I’ve neglected this for so long prior to a month ago.  Since I’ve exhausted in writing, my feelings towards the unknown of the appointment this Wednesday I figured I would write about something that I have seen everywhere I turn recently, which is the term “unconditional love”.

What is unconditional love other than what us believers know is true about Gods love for us.  It is such a foreign concept because usually that kind of love is something most people don’t see or do unless you are a parent.  I wanted some clarity on what it looked like to others so I searched the term and one website listed 12 signs of unconditional love, which are listed here 1) they bring soup for you, 2) they support you in your dreams, 3) they handle your vulnerable side, 4) they put your needs above theirs, 5) they are proud of your success, 6) they respect you, 7) they let their guard down in front of you, 8) they see your full potential, 9) they are selfless, 10) they don’t expect anything in return, 11) they forgive you if you screw up, 12) they’ve always got your back.  As simple as the list is, it seems to be very difficult for people to give freely with no strings attached.  Personally, if you ask me my thoughts on it, I believe it is something you will rarely see outside of a parent/child relationship or in new love.  Beyond that it is very difficult to attain, much less keep.

The more I read about this, the more I thought about the gift of being a parent of a special needs child.  It goes way beyond what unconditional love is, if that is even possible. It is everything listed and more to the twentieth power.  It is exhausting, frustrating, and the stress surrounding some circumstances is easy enough to make you question your sanity but you do it gladly.  At the same time it is empowering, it makes you evolve and you are able to understand how truly delicate life is.  I can say with confidence I am no where near the person who I was before my experiences of being a mother with a medically complex child.  I sometimes step back and realize how thankful I am for all of the trials because it has made me appreciate life, love and the people I care about more than I think I would ever have been able to without these experiences.

98465EF9-D9B0-4727-A354-20A1FB5D5041_1_201_a

My Unchecked Mind

I have been so distracted lately and I can say its been really wonderful.  I have had moments where I count down the days to the appointment with my fingers and move onto what I was doing to keep myself from breaking down.  Today though, today marks 5 days until Eva’s cardiology appointment and I can count that with one hand.  That changed something for me psychologically.

I also got the kids back from their dads today so I’ve been sitting back watching them interact and play.  I can’t help but have to turn my head away from their direction over and over to wipe tears from my eyes because I still can’t shake this fear.  I can’t help but analyze every future moment in hopes of trying to mentally prepare myself for every scenario.  If it’s not time, I imagine that I will express to the doctor how for over 6 years I have been waiting for this surgery and how damaging this is for me and hope that she can look into the future so I can have an estimated date, which she obviously can’t do.

The second scenario is more complex in my mind.  If it is time, then what?  Will I excuse myself and breakdown?  Will I be in shock unable to process anything until I drop her off at her dads and be flooded with emotion?  Will I run away?  At this point I am not so sure how I will react.  I have no idea what is going to happen and there is no reason for me to even think about it because there is literally no point.  I understand this.  So the verse that has been helping me out is, “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself.  Sufficient for the day is its own trouble.”  I mean that verse is literally exactly what I need to concentrate on, but my mind still travels to dark places if I don’t take back control which I feel may be harder the next few days.

It’s truly amazing how much power the mind has.  If left undisciplined it can and will take you down the blackest hole by keeping you from peace and happiness while killing you spiritually as well as physically.  It is taking more and more of an effort for me right now.  

I had a dream

As I continue the countdown until Eva’s heart appointment, my subconscious decided I needed to have that event in the forefront of my mind.  I had a dream last night that we were at the cardiologist and the doctor told me everything with her heart was fine for now.  My reaction was a surprise because instead of being relieved, I was upset and told her I couldn’t continue to do this every few months.  When I woke up, I was confused on how I handled the news but after reflecting on it, I came to realization that in fact it may not be time.  What if all of the signs that are pointing to her needing an intervention now  is in fact inaccurate?

I am not sure what would be best, but I can confidently say that either way, I must give all of this to God because this is not a cup I can carry alone.  I have tried many times to take matters into my own hands but I’ve learned the hard way that God has given me so many trials in my life so that I could constantly lean on him.  I understand now that because I am a control freak, I am being tested often so I don’t forget who is actually in charge, and that has freed me in a way.

One thing about having a child with a heart condition is that there is always a lingering thought in the back of your mind reminding you that the one of the most important organs in your child’s body is imperfect.  The one organ that shouldn’t be compromised is and at every cardiology appointment, whether it be every 3 months, every year or several years… at anytime, they could say we need to go in and correct this.  The one thing I can say is that we are blessed to live in this age, in this city, with Texas Childrens Hospital being so close.  So while there are many things to be upset about, the circumstances surrounding us are pretty great.

You know, they did a study on parents with children with CHD and it was found that 30% of them had PTSD.  I certainly believe it!  The surgeries, medications, the strain on relationships, the feeling of not being able to take those traumatic moments away from them, the fear of them not waking up, and the list goes on can really do a number on you.  I think it teaches you, or it has taught me, that no matter how tired I am, no matter how much I think I can’t handle anymore, I can and I will.  Not for me but for her because while I think I am doing the heavy lifting, it is in fact her that will physically have to carry this burden, I mean how crazy is that?  My child is the one who will literally have to fight time and time again to recover from surgeries intended to keep her alive.  Sometimes I can’t even wrap my mind around is.  Probably because this isn’t supposed to be how it is, but it is.

Unfortunately, I handle difficult times like these by mourning something I haven’t even lost yet.  I mean how absolutely sick is that? I prepare myself for the absolute worst in order to deal with the most difficult times of my life.  It’s definitely my defense mechanism, which I’m sure I can’t be the only person who does that, but after everything is ok, the guilt of my defense tactic is another thing I have to overcome.  So that’s it.  13 days left to know what’s going on with her little/huge heart.

Here I am again

You know, I’ve thought about writing again for sometime but I finally prioritized some time for this.  I have been needing to express what’s in my soul to help me release the stuff that has made me feel like I am drowning above water.

To start, life has always kept me on my toes.  I don’t say this as a negative, in fact I am grateful that I have never been able to get to comfortable because I don’t feel like we grow unless we are in uncomfortable situations.  I am proud of being able to get up time and time again, against all odds, in order to do more for me and my kids.  I am proud that I have been able to grow on a personal level so much so that I do not even recognize myself anymore.  I suppose that happens as you get older, and to be able to grow is something that many people were simply never given the opportunity to experience.

After having some brutal moments in life surrounding the “what’s to come” of the health of my daughter, I find myself once again being dragged down by this overwhelming feeling of what if its time.  What if it’s time to have to once again hand my very vibrant and overwhelmingly charming daughter to surgeons that will have to cut open her chest in order to help her live longer.  The irony in that is just insane.  What if it’s time to sit in a room with her and advocate against the people who know what’s best, medically speaking, when I know what’s best for her from previous experiences in a hospital setting.  That is a balancing act in itself.  I know she is full of surprises in a healthy setting, and she is no different in the hospital setting.  Her body  knows how to throw in a wrench to complicate and perplex the hospital staff, but perhaps that’s what just makes the recovery that much sweeter.

You know I can always see the glass half full in every situation, and that is something I think God has truly gifted me with, but one thing I can’t seem to see the positive in, is the fact that I am tired.  I am so tired of realizing that He chose me to be the one to hold people up against others and even themselves but I have been left alone through this process for years.  It could be that it is because I push people away, it could be that I have gotten so comfortable with fighting alone that the thought of leaning on someone else is too risky.  But regardless, I will press on, and I will continue to fight for us because that is what I am called to do.

Whether it is time for surgery or not, I find myself processing the things that are to come if it is time.  The only catch is that the twins are older and there are more things to consider.  There are the thoughts of having a hospital bag and what I always need for our stay there for an unknown amount of time, there are the mental preparations I have to prepare for the release of her physical body into their God willing sturdy hands, there is the thoughts of the how she will look like after and the medications, central lines and such.  There is the careful, close eye on the 24, 48, 72 hr mark that haunts me.  There are the things I have to push for to prevent complications that she’s already experienced, including DVT’s, issues with sedation and c-diff.  There will be the preparation of keeping Eidan in the loop of why his sister/best friend and mom isn’t home with him for sometime but helping him understand that he is still important and not abandoned.  There is the inevitable fighting and arguing with others who will never be able to process things appropriately and trying to keep God in the forefront of my mind through it all.

SO what now?  The countdown of three weeks until her next cardiology appointment starts today and the anxiety has already resided so comfortably in my chest that I suppose that’s where it will stay until… until, I am not really sure.  So I put on my big girl panties and press forward because not only are there people always watching, and hoping you break, but your kids will learn many valuable skills by watching how we deal with trials.  If they can learn to always fight, even if that means alone but with God, then I think that is one of the best things I can teach them because it is not an ability that everyone cares to possess.

E8CB78A5-C2FE-4B00-B288-CD749E88164C_1_201_a

Things have changed

You know, its been over a year since I’ve written on here and my life is nothing like it was and I’ve grown numb to all of the hits I have taken, but the good news is I am still able to appreciate the good.  My light is not gone and for that I am grateful.

Let me catch you up to speed strangers…

My soon to be ex husband, the good and decent man that he was is gone.  I take part of the responsibility for why we didn’t work out.  I needed help throughout the marriage because of all the trauma in my life.  I needed a therapist and instead of working on my issues, I didn’t, so I became hard.  He took the brunt of it and for that I am responsible, but the rest is out of my hands.

He wanted things to end when things were getting better and he got himself a girlfriend.  I didn’t care, and I still don’t care that he has a different one today.  He deserves to be happy, but his responsibilities as a father have gone out the window.  For what used to be a man so dedicated to his family is no more and the kids now have 3 hours a week on average with their father.

It says a lot about this man that when our daughter was in the hospital fighting for her life (from January to March of this year), he decided to leave her in the hospital and accidentally got an old fling pregnant. For that I am not angry but in which the manner it happened repulses me.  I am supportive and often check on the status of her and the baby, and I am excited that my kids will have a sibling especially since I will not be having any more kids.

As for our original plan was that we would always be friends and that he would continue to support us until I am done with school. That is out the window and he told me a few days before a very important cardiology appointment for my daughter (that determines if its time for her first actual open heart surgery) that he is no longer going to do that.  

I have learned a lot about my personal experience as well as my own moms.  I have learned that if you are married don’t EVER stop moving yourself forward.  If you ever have to get a divorce, the law is the law and fair or not it doesn’t matter.  It doesn’t matter how much time you have dedicated to your husband in making sure he reaches his goals.  It doesn’t matter how much time you have spent making sure your kids are properly taken care of.  It doesn’t matter if you always put yourself last, everything is written in black and white in divorce law.

In summation, not even this can hold me back from reaching my goal to one day become a nurse.  I have gone through so much with my children that this person will never get the best of me.  As for you, if you are married, don’t forget your responsibilities as a wife/mother and be the best you can, but set a goal for yourself and never lose sight of it.  One day this personal goal may be one of the reasons why you didn’t break when maybe you should have.

 

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.

 

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.

 

 

 

February 1- Turner Syndrome Awareness Month

img_1850

Nothing is more appropriate for this post than having my daughter, who has Turner Syndrome in a picture wearing a butterfly costume to celebrate Turner Syndrome awareness month!  I am beyond thrilled to have a month where I can educate anyone interested in learning about TS.  Let me tell you about Eva’s journey, in a different way than I have shared it in previous posts

Eva shouldn’t be here in a number of doctors eyes.  We were told to plan for the worst the whole pregnancy, when it came to our daughters survival and so we did. When she survived we were introduced to a 3.5 lb little girl who had an extremely large cystic hygroma that resembled a pillow attached to the back of her neck. It’s safe to say her weight was much less than that was given. Nurses remembered her not by her name, not by her face but the hygroma. As mom and dad we didn’t know how to feel. We felt confused because we didn’t understand how she survived her medical complications, we were sad thinking we may not get to know who this little girl would be, but of course Eva had different plans than anyone who doubted her. Till this day she still proves to be a rebel.

Eva has not had the easiest life and she has faced more life changing events than most adults.  People tell me that it’s good that she’s going through this as a baby because she won’t remember, but I think they are wrong.  I don’t think it’s a coincidence that for over a year she cried the hardest if you sang two specific songs (played In the NICU) in a slow melodic tune.  I also don’t think it’s a coincidence that when she parties around 2 in the morning in her crib alone, clapping and laughing, just like she used to in the NICU with her favorite nurse.  Everything she has been though remains with her. It is a part of her and it shows.

I only hope the first repair done to her heart at 8 days old helps her endure how rough this life is. I hope the second repair to her heart done at 6 months old gives her the strength to look past how ugly some people can be and still be able to love everyone who deserves it, even those who don’t.  When she finally needs her third repair, I pray it helps her realize how strong she is and how many lives she can change, just by her story.

Her life already has changed her brothers life because I don’t think they both would be here without each other.  Her life has changed her dad’s life because he knows having a daughter is the hardest job any father can have and she’s changed my life because I sincerely never knew I could do all of this.  All of the heartstopping, breath holding, tear jerking moments I have had in these 2 ½ years has been the most character strengthening moments of my life.  I am proud to say that while not everyone is chosen for this kind of parenting, I thank God I was.