Don’t let go of me, momma!!

Don’t let go of me, momma!! Those were the words that Mighty Z kept saying to me today during her CAT scan. How many times this little girl has told me not to let go of her? 1,000? 10,000? More?  Every time she has ever had to go through something that frightened her she has echoed those words, over and over and over “Don’t let go of me”. I think that her telling me not to let go of her when she is frighten is because I am her anchor, her safe harbor. She knows that no matter what happens I won’t let go. Yet those words haunt me and I try my hardest to never let go of her no matter how slippery or how hard it gets.  What is difficult is trying to wrap my head around is what if? What if our hands get too slippery and I can’t grab back on? What if I mess up and somehow lose my grip?  That can never happen, I have to stay steadfast and cement my hand to hers I can ever let go!!! I don’t know why today these words scared me a bit, but they did. Sometimes the magnitude of what we go through on this journey is realized and I have to face the facts, and sometimes I walk through this journey like it is a walk in the park. I think this is how I cope, but I know one thing for sure I will never let go until she tells me too.

01 02 12

There is no post in my trauma

When you have a child who is medically fragile and have gone through stuff that no mother should ever have to see; you are often told that your panic attacks are due to PTSD (post-traumatic stress disorder) from doctors, therapists, family members, and friends.

Recently I started seeing a therapist and once again I was told that I have PTSD. As I sat there listening to him tell me what he thought I was going through; I stopped him and told him something that rocked my on world “there is no post in my trauma.”

This is truer then I like to admit. Yes there horrors from the past with Mighty Z that wake me up in the middle of the night in cold sweats feeling shaky as my heart pounds in my chest, yes there are noises and smells that bring me back to a traumatic time where I almost lost her.

 However, what is harder to deal with is not really the past trauma but the current any moment trauma that has yet to happen, but surely will happen any given moment. It is hard to stay in the present and to not give into the trauma that is lurking around the next corner waiting to pop out at you any moment.

I will say that I have done a pretty good job in masking my fears of not really what the future holds but more what is about to come. I think we as mothers of medically fragile children actually have chronic-traumatic stress disorder (CTSD) and not PTSD. Like our children who live with chronic disorders and illnesses it is all the time, no break, no days off, follows you around ready to pounce on you trauma.

So what do you do with CTSD? I am certainly not the one to tell you the best way to handle it, however we can look at our children who deal with being chronically ill and see how they deal with it. Mighty Z just pushes on through although I am not as brave, tough, or as resilient I can take my cues from her. Mighty Z looks at everything with laughter and humor so I need to do the same. I need to make time for myself so that my whole world isn’t centered on her disease and what is around the corner. I have spent 15 years trying to keep her alive and trying to give her a life worth living when I should have carved out a time for myself as well.

I bought into the lie that having a child who is medically fragile is “a life for a life”, but I am starting to see it doesn’t have to be. I think what we really need is caregiver fatigue management and I am trying to figure out what that is and how I can carve that into my day. I am sure I will always have CTSD, but I don’t think that CTSD will have me much longer.

01 02 12

The secret heart of a parent with a medically fragile child

The secret heart of a parent with a medically fragile child feels, like being lost at sea with the rain pouring down, there is no one around to help put your feet on solid ground. Your world overwhelms you and you don't know if you can walk or if you will drown.

Feeling safe and secure is no longer a viable option.  Tossed to and fro from Doctors, Therapies, and Hospitals. Never really trusting what you are told or what you have read. Life lines are not there to catch you.  The future is too awful to look towards.

The days of feeling like you can't bail one more pail of water, you can only paddle your ship so fast, yet you know if you don't bail that water, paddle as fast as you can, you will have to face the future sooner than you think. 

The lies you tell your family, your friends, yourself that all will be ok, all will work out.

 The wind that blows you once again off course lead to the  biggest storm, the end of the story, yet you beg for it not to be over, you pled to be able to bail one more pail of water, you vow to paddle harder, still your voice falls on deaf ears.

 Just when you think that the ship is lost the journey is at an end, for no reason the rain dissipates, the water stops pouring in, your ship has righted itself. You feel elated that you have dodged deaths door once more.

You begin to bail the water with abonnement, paddle at full tilt all the while knowing that you cannot keep this pace, you cannot keep the ship afloat indefinitely and someday the reality of the future is achieved and you have to watch the ship sink.

 Living, breathing, existing in that state of knowing where you are, where someday you will be and yet pretending all the while that it is fine you are strong enough to steer the ship and not drown.

That is the secret heart of a parent with a child who is medically fragile.

01 02 12

I have issues

Walking this road of special needs and adjusting to this “New Normal” world is difficult no matter the diagnosis, simply because even though you are living in this New Normal world everyone else (so it seems) is living in “the regular normal world.”

Besides keeping your special needs child alive, going to doctor appointments, therapies, and trying to make sure that they have a childhood full of childhood things that don’t include anything medical, one of the biggest issues of this New Normal is explaining to your child why they are different.  And yes, even though you want to tell the world when they make faces at your child to “Mind your own business and learn some manners!” you will at some juncture have to explain to the world why your child is different.

I have always been honest with Mighty Z and her sister Lala (without going into the scary details) of why Mighty Z was born with special needs.  It seems that not just have both my girls accepted my reasoning's, the world also has accepted my explanations of why Mighty Z has special needs.

Honestly the explanations started with Lala.  She is 29 months older then Mighty Z. I had to explain to a 3 year old why her sister was coming home at 6 months old on a ton of machines.  

I started with “Everyone has issues.  Some people can’t see very well and need glasses, some people can’t hear and need hearing aids so they can hear, some people can’t eat so they have a tube that feeds them, some people are sad inside and need help to feel happy, some people have a hard time reading , doing math, etc.. Everyone has issues. Some issues you can see and some issues you can’t, but the fact remains that everyone has issues.  Mighty Z’s issue is that she doesn’t breathe on her own all the time. So just like a person who  wears glasses, Z’s life support machines help her when she needs the help, and the monitors help mommy know when Mighty Z needs a little more help. Let’s think about what is hard for you that you need help with some times.”

It is interesting that this simple explanation was all that Lala needed to understand her sister’s needs. As Mighty Z has grown I have told her the exact same thing, and Mighty Z accepts that she, like everyone in this world, has some issues.

I have been asked by several teachers and parents throughout the years to help them to understand Mighty Z’s special needs, and yes, whether the asker is young or old, I always start with everyone has issues.   And you know what?   99.9% of the time that is all people need to understand why Z needs what she needs.

Yes, some issues are bigger issues than others but in the end that’s all they are, just issues.   It’s important to remember, though, that your issues doesn't define you and Mighty Z’s issues definitely don’t define her.

So if you ever see Mighty Z out and about and ask her what is different about her, she will just tell you that she’s got some issues.

edited by Emily Minich

01 02 12

Go to Bed Momma

What nights consist of at the house of Mighty Z :

 

What Momma lays and bed and thinks about:

 

Is Z breathing weird? I think she is defiantly breathing weird, I should go check.. (I go and check on Z everything looks good)

 

I can’t hear Z breathing, I should go and check … (I go and check everything looks good)

 

Ugh why is her heart rate sounds so high, I should go and check... (I go and check everything looks good)

 

Oh my!! Her heart rate sounds so low; I should go and check….. (I go and check everything looks good)

 

I just heard her oxygen level drop; I should go and check... (Her oxygen is 99%)

 

I just heard her oxygen level drop again; I should go and check... (Her oxygen is 98%)

 

I just heard her oxygen level drop again; I should go and check... (Her oxygen is 97%)

 

You know her alarms will go off at 94% oxygen 60% low heart rate and 160% high heart rate, you don’t need to keep getting up, momma tells                                                                                              herself.

 

I just heard her oxygen level drop again; I should go and check... (Her oxygen is 96%)  crap I need to sit here and watch her oxygen level it might drop to 95% and then I need to start figuring out what’s going on ……. 30 min later momma again tells herself “ you know she has alarms that will go off when she needs you ? Right?  Momma tells herself... “Sigh, yes I know and so momma goes back to bed”  

 

Seconds later Z’s alarms go off and up I go  to check on Z, breathing treatment, position change make sure all machines are on correctly,   okay looks like Z needs some oxygen.

 

Oxygen is on Z, I stumble to bed exhausted.. Slowly fading into slumber ….

 

 

Daddy starts to snore loudly … I am up again.

 

 

Yes, I know I don't need to get up every time, however I lays there and can’t sleep because of it, I need to make sure all is well with Z.

 

Maybe tonight I will tell myself not to get up unless I hear alarms… (but momma won’t listen to herself)

01 02 12

That First Night

The first night of Mighty Z’s life was heartbreaking.  There were no
well-wishers, no flowers, and no congratulations; people just didn’t
know what to say. My mom stayed with me that first night on the labor
and delivery floor. I was all right-- as all right as I could be
having my baby in the ICU.  I was holding it together until the nurse
knocked on my door and told me that is was time for me to feed my
baby.


I quickly sat up thinking that maybe it all was just a bad dream and
maybe my baby was fine.  Just as I thought that silly thought I heard
another nurse say, "No, that is the wrong room.  This mother's baby is
dying."

How could my baby be dying when just hours before she had been
pronounced perfect??? Tears flowed down my cheeks as I felt a wave of
grief and anxiety wash over me. I felt helpless, weak, and hopeless.


Thankfully the nurses were wrong, but that night was one of the worst
nights of my life.


That was the night that I really knew my world had changed and that
St. John's Medical Center would be my home for the next six months. 01 02 12

The begining

The month of January is always a time of reflection for me. Not just because it is the start of a new year, but also because it is Mighty Z’s birthday month. I remember like it was yesterday how I was so ready for her to be born, not a thought of ‘would she be alright?’ even entered my head. I had done all the prenatal tests and they had all come back perfectly, so what was there to fear? I remember getting up early on January 22 and heading to the hospital excited to meet Miss Z.

 

Everything went beautifully; the only hiccup was that my blood pressure was a bit high and they gave me some medication that made me kind of loopy. When Z finally arrived, the nurses gave her to me and pronounced her perfect. 

You know hindsight is 20/20, and I remember Z kept wanting to fall asleep when I was holding her. Her nurse kept saying ‘wake her up; she needs to be awake.’  Yet that was easier said than done--  Z kept nodding off no matter what I did. The nurses, still unworried, took her to the nursery and they sent me up to my room where I waited and waited and waited for someone, anyone, to come to my room and tell me something.

 My husband, my mom, everyone had forgotten about me and I had no idea why. Finally my husband came into my room and fell on top of me in a puddle of tears and said they have taken our sweet Z to the intensive care unit because she wouldn’t breathe on her own.

I have always been one to take charge and this time was no different. I demanded that I go and see our Z. The nurses said I could only go if I could walk around my room three times without throwing up. I remember I started walking and immediately threw up. Yet I tried again I walked around twice more and told my husband not to tell them I didn’t do the final third walk. They placed me in a wheelchair and up to the NICU (Neonatal Intensive Care Unit) we went.

The NICU is a dark and sad looking place, and there in the corner was my sweet Z in an isolette with tubes in her mouth and nose, and wires, wires everywhere. How could this be? The nurses not just a couple hours ago said she was perfect; how did we get from perfection to this place?

I remember touching Z and trying to sing to her. She flinched from my touch and started screaming. My heart broke into a tiny pieces in that moment. Little did I know that I was about to embark on a journey that no mother ever wants to travel.

Throughout this month I will walk you down the beginning of this journey as much as I can remember. There are times of great success and yet times of greater defeat and pain as the realization of why my baby wouldn’t breathe on her own finally started to dawn on me.

01 02 12

Flu vaccine, friend or foe

 

 

 

As a parent of a chronically ill and medically fragile child, I am always making sure that Mighty Z’s health is top priority. When it comes to vaccines, I am almost always pro -vaccine simply because with Mighty Z’s syndrome, CCHS (Congenital Central Hypoventilation Syndrome), anything can pop up randomly resulting in an unplanned ICU stay or an emergency surgery.  Also, I know I need to do my best to prevent the other issues that may occur if I don’t vaccinate, so I always make sure we are always up to date with vaccines.

 

Last year according to the Center for Disease Control, only 50% of children who are medically fragile had the flu vaccine, and although that might be shocking to some, it was not at all shocking to me. One has to remember that even though in a controlled environment the flu vaccine has been proven safe and effective, life is not a controlled environment. Even as a mom who is pro-vaccination, I have chosen for Mighty Z not to have the flu vaccine, and many other moms who also have children who are medically fragile have chosen the same. It’s not because we feel there is something wrong with the vaccine; it is mostly because through trial and error we have found that a flu vaccine for our kids has sent us to the PICU more than once.  

 

Whether or not to give your chronically ill, medically fragile child the flu vaccine is just as hot a topic as the 2012 election was. When you deal with a child that has a rare disease or really any disease, being pro vaccine for all vaccines can be tricky. As a mom with a child like Mighty Z, it is up to me to make sure that it is safe for my child to have all vaccines, through research and trial and error. What might be good for some can be deadly for others, and sometimes you have to weigh the “is the risk of having a vaccination worth a trip to the ER” question. You have to know your own child and with the help of your doctor make the right choice when it comes to giving or not giving the flu vaccine.

If you choose not to give your medically fragile child the flu vaccine, it is imperative that you help protect your child from being exposed to the flu as much as possible, and also look for signs that your medically fragile child might have the flu.

Some great ways to limit exposure according to Flu.Gov are to wash your hands often with soap and water or an alcohol-based hand rub. Avoid touching your eyes, nose, or mouth. Germs spread this way. Try to avoid close contact with sick people. Practice good health habits. Get plenty of sleep and exercise, manage your stress, drink plenty of fluids, and eat healthy food. Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.

The signs that your child might have the flu are:

A 100^oF or higher fever or feeling feverish (not everyone with the flu has a fever)

A cough and/or sore throat

A runny or stuffy nose

Headaches and/or body aches, chills, Fatigue

Nausea, vomiting, and/or diarrhea (most common in children)

So weather or not you vaccinate for the Flu make sure you take preventions against it and watch for signs for it.



edited by Emily Joy Minich
01 02 12

Doctor Stalking

When your child gets a new doctor, it is usually through the doctor lotto. You know what I mean: your child winds up in the ER with a seizure and then is admitted, and wham bam, the next morning you have a new doctor who you have never met. It happens all the time, whether your child has been given a new party favor (such as having a seizure for the first time) or your primary doctor tells you need to see nephrology, endocrinology, etc.; the doctor gods spin the Wheel o’ Doctor Wheel (much like the Wheel of Fortune) and you get whatever doctor the arrow points to.

 

This new doctor can be good, okay, bad, or downright horrible, yet you are “supposed” to make do with this new doctor and trust everything he says, right? Absolutely NOT!!! Every time Mighty Z gets a new doctor I begin to doctor stalk.  I ask all my friends with miracle babies if they know the new doctor; I ask my other doctors about him, and yes, I even Google him. I want to know all I can about this new doctor before I see him in clinic.

 

During my first visit I assess the new doctor:  has he read Mighty Z’s medical records?  Has he looked up Mighty Z’s syndrome?  If so, does he understand it?  And above all, does this new doctor listen to me?

 

I totally understand that trust and respect must be earned.  The doctor has to earn my trust and respect, but I also must earn the doctor’s trust and respect. I think of this as a new relationship in which the doctor and I are just starting a relationship and we both are very wary of each other.  There is no trust and no respect, and we tip toe around each other until we have established trust and respect. The level of trust and respect varies from doctor to doctor. I have found out the hard way that just having an M.D. at the end of one’s name doesn’t mean he knows how to care for Mighty Z.

Mighty Z feels the same way.  I know when Z trusts a doctor and when she doesn’t, and when she doesn’t is when we start looking for another doctor. Yes, you can fire one doctor and hire another if you do not trust the one you were given by the Wheel o’ Doctor Wheel. The best way to go about finding a new doctor is the same way you stalked your old doctor: asking other mommies of miracles, asking the doctors that you trust, and Googling.

 

Doctor stalking is a must for mommies who have been given miracles; your doctors must be worthy of your trust and respect because only then can you be a team.

Edited by Emily Joy Minich

 

01 02 12

My Dream of Hope's Seed

“You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness.”  Psalm 30:11

When Mighty Z was born, I mourned not just that fact that my child had a horrible disease and that I was told she wouldn’t make it to her first birthday, but I also mourned the friends and family I lost. Frankly, nobody knew what to say to me and at times people still don’t, and so many times they just stay away from me in hopes that they can avoid any awkward situation with me. I remember sitting up in the NICU (Neonatal Intensive Care Unit) and feeling completely and devastatingly alone.

The Devastating Silence

Of course I had my mother, father and one of my aunts who came up to show support, but even they didn’t know what to say. What do you say to a new mother who has been told there is no hope and all she can do is trach her beautiful baby, place her on life support machines, and pray, always pray, that she would survive?  I remember that traching Z was the hardest choice I had ever made in my 25 years of life and I was devastated, and nobody knew how to comfort me.  I think that if they had told me that all would be well, I might have gone over the edge because nobody could understand how hard it was.
As the years flew by and I had adapted to having a child with a trach and on a ventilator, we stilled graced the PICU (Pediatric Intensive Care Unit). I began to look through the slits in the curtains that separated me from other mothers with children who were also fighting huge battles, and slowly a little seed started forming in my heart. I thought to myself Wouldn’t it be wonderful if I knew these other women who are also going through exactly what I am?

My Dream

I went home and I began to dream, to dream of an organization that would bind parents of special needs children together, to help mentor one another, help pray, and understand what this new world was about.  I had a burning desire that other new mothers who also had to trach their babies, place them on life support machines, or place tubes in their babies’ bellies, or have to have their babies fitted for power chairs would have the support of other mothers who had to go through the same thing so that they no longer felt alone.

Turning My Dream To A Reality

I tried for years to create such a group but every time I couldn’t get off the ground. I prayed and prayed that God would show me how to start it yet it felt like He wasn’t listening. Last December I was asked to start a local chapter of a national group that supports special needs moms.  I was told I could make it whatever I wanted; however, my ideas far surpassed the ideas of the group.  I wanted more; I wanted to empower other mothers with these special little miracles to go back up to the NICUs and PICUs and let the new mothers see that they were not alone.  I wanted to create a bond of friendship so tight that when one of our own babies was in the hospital, we would visit each other in order to fill each other’s cup full of hope.

Not So Easy

The national group didn’t want that. Their vision was strictly online and although that is so important, I wanted, no, needed, the face to face friendships. Then God sent me a friend– someone who also had felt the desire to make sure that others didn’t feel alone like we had.  Emily Minich and I began to talk and share with each other our dream for such an organization.  You see, what God was waiting on was for me to meet Emily.  I needed my other half, so to speak.  Everything I am not good at Emily is amazing at, and vice versa. Once we launched our group there was no holding us back.  God began to bring people in to the group; He aligned people with the power to get us into the NICUs and PICUs who were thankful for our presence there.

Friendship And A Vision

Emily and I named our group Hope’s Seed, because what we wanted to do was plant seeds of hope into the mothers of special needs children, so that these women can know that there is always hope and that they are no longer alone, that we will help pick up the torch in the darkest night and show them that the way is full of light.
You see, God did turn my mourning into dancing.  He gave me friends that finally understood this new normal world that I was made to live in.  He took off my sack cloth and girded me with gladness and giggles.  

Hope’s Seed Grows

My friends at Hope’s Seed always know exactly what to say no matter what the doctors tell me. They are not frightened by machines and alarms. Trachs, ventilators, G tubes, power chairs, any trisomy syndrome, autism spectrum, and mental health issues are common among us and they bind us closer together as a family. We have all learned to see the beauty in the special needs world and now are more partial to it than the regular world.
Hope’s Seed mission is simple that no mother is left all alone with no hope in any part of this journey. We want to be that person who helps carry this weight, and we want to be the one who gives you the tools you need to walk this road. We are the people who want to plant seeds of hope in you and let you know that you are no longer alone.



edited by Emily Joy Minich

01 02 12

Surgeries,Seizure, and School Oh My!!!!

This summer has been a whirlwind of an adventure, and not an adventure that any one of us wants to have again, especially Mighty Z. We started the summer in regular fashion, full of ideas of seeing all of Dallas’s little hidey holes, exploring the Arts District, the new museum that just opened and hopefully, having a little summer excursion away from Texas. Unfortunately, less then a month into summer,  all our plans came to a screeching halt.

 

The tumble down the rabbit hole started with Mighty Z’s loop recorder that was placed in her chest in April.. Which, as many of you have read in earlier blog post, led to Mighty Z having a cardiac pacemaker, going into respiratory acidosis, almost dying from that, then going to another cardiac pacemaker ‘redo’ because  when the ICU doctor was resuscitating our Mighty Z, one of the leads fell out of Z’s left ventricle of her heart. Just when we thought all the drama was over, Mighty Z had her first seizure.

 

The seizure episode started on a night like every other:  uneventful. I had placed Mighty Z on her breathing pacemakers and put on her pulse ox probe (to monitor Z’s oxygen levels and heart rate) gave her all her medications and breathing treatments. As usual, I went to clean the kitchen while Z watched a little T.V. before bed. All the sudden I heard her alarms go off -- frankly, I thought Z was just moving around and the monitor was just not picking up (which is common). In  true perfect ‘mom style’ I said loudly to Z “put your leg straight so the monitor can pick up the signal!”

 

Usually this is met with Z saying “okay, okay,” however, this time I was met with silence. Thinking that Z had her headphones on, I went in to check her and there I found Z’s legs and arms in odd angles and Z pale covered in a sheet of cold sweat and staring out into space. In the beginning, although she couldn’t look at me, she was answering me in a monotone voice. I calmly placed some oxygen on Mighty Z and then rolled her to her side, called 911 and that is when Z began to start twitching first in her face and later on her eyebrows, torso and arms. Z was completely nonresponsive while this was happening.

 

As I held my sweet Z while waiting for the ambulance to arrive, my thoughts turned to Lala, who  was there running around grabbing my purse and some items for me to take. Lala was perfectly calm but my thoughts were torn because I could not leave her alone yet, and I could not leave Z alone either.   As I wrestled within myself on how I was going to care for both of my girls, my sweet, sweet friend T, had just driven past my house from the gym and saw the ambulance and stopped. Relief flooded my heart as the paramedics were placing Z on the stretcher and as soon as I saw T, I knew that Lala would be cared for while her Daddy came home from work.

Long story short, Z had a focal seizure and her EEG report came back with generalized spiking all over. We had two choices on how we could move forward: one, we could wait and see if she would (and according to the EEG she would at some point) have another seizure and then diagnose her with epilepsy and then start her on antiseizure medication, or, two, be proactive and call it what it was (epilepsy) and start her on the medications right away. The reason I went ahead and started her on the medication is because I felt during this first seizure we had been blessed that Z was on her machines and monitors when it happened -- what if next time we weren’t so lucky? And my philosophy has always been “try to be proactive and not reactive.”

 

Whew! That was over and we all thought that our drama-filled summer was at an end and we finally welcomed the thoughts of school and fall. Mighty Z was to start at her new school, I was to meet with her new teachers and calm down any fears or concerns, and all would be well! The new school was proactive and actually looked up and researched her disease and quickly came to realize how medically fragile our Mighty Z is and their concerns began to grow. I will say that on paper Mighty Z’s syndrome looks horrific, but in actuality it isn’t as dramatic as it sounds. Of course this is coming from a momma that has been dealing with it for twelve years and so it is no ‘big deal’ to me. The new school decided they couldn’t handle even the thought of having a child like Z in their school, even though Z had never had an issue at any of her other schools in regards to CCHS (congenital central hypoventilation syndrome).

 

After begging, pleading, and practically bartering. The new school allowed Z in class with some stipulations. First, Z’s big doctor had to call one of the Board of Trustees (who happened to be a doctor at Scottish Rite Hospital) and tell him all about Z’s condition and write a letter as well. Second, I had to send ALL of Z’s medical records to that same doctor and to the school. And finally, I had to be at the school during P.E. (why just P.E., I have no idea).

 

Why you ask didn’t I just find another school, or just home school her? Well I truly feel it is important for Z to be at this school -- it will provide many things that Z needs to push her to the next level academically and socially.

 

I am hoping and praying that Fall is kinder to us than Summer was, and that we can go back to just being a normal family that happens to have a child on life support machines.

edited by Linda Kruger

01 02 12

Are you really Pro-Life?

What does Pro Life really mean?  Is it just an anti-abortion club or is it really about Pro Life, which simply means that someone is, well, pro-life? The Pro-life movement uses buzz words like “right to life” and “respect life.” Even Governor Perry said in D Magazine that: “children deserve the respect of recognition before their lives are tragically cut short.” Perry also said “I don’t think there is any issue that better fits the definition of “compelling state interest” than preventing the suffering of our state’s unborn. We cannot, and we will not, stand idly by while the unborn are going through the agony of having their lives ended.”

But what about the children who are born with a special need? Are we Pro-life for them? Do we see the beauty in a child who will never be able to breathe on her own without the help of a ventilator? Do we see the treasure that God has given to us in a baby who will have to be tube fed through a tube in her belly? Can we see the miracle in a child who will never use his arms or legs? Do we truly think every child has a life worth living?

Twelve years ago I was told that my daughter did not have a life worth living, and I was encouraged to let her go by the doctors and by people who not just said they were Pro Life but who were actively involved in the Pro Life movement. I was told that they would just take her off her life support machines and I could bathe her, and while I bathed her and dressed her and rocked her she would pass and all would be okay.

I didn’t take that option. I chose to be Pro Life. I chose to keep the miracle that God gave me and not throw away God’s special gift to me.

In the Psalms it says "Lord, what is man that you care for him, mortal man that you keep him in mind? . . . With glory and honor you crowned him, giving him power over the works of your hands" (Psalm 8:5-7).

Genesis 1:27 says “So God created human beings in his own image. In the image of God he created them; male and female he created them.”


There is the key. Not only did God make us, but He values us and created us in his own image, even the children with special needs. The Bible tells us of a God who is madly in love with us, so much so that He became one of us and even died for us while we were still offending Him (see Romans 5:6-8). In the face of all this, can we say that human beings are disposable, like a car that becomes more trouble than it is worth? "God doesn’t make junk." If you believe the Bible, you have to believe that human life is sacred, more sacred than we have ever imagined!



I urge you to look inside yourself and ask are you really Pro-Life or are you just part of an anti abortion club?

All the pictures are of the miracle (my sweet mighty Z) that God has given to me simply because I was Pro-Life.

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Trisomy 13 Isabels Story

Trisomy 13 has held a special place in my heart simply because of Lexi (Alexis Harlow) She was an angel sent down for us to have just a glimpse of what heaven is truly like. Lexi had me reading everything about T13 and finding others that had a child with T13. Even though she was not mine I felt a connection to her in a way she was mine in spirit She reminded me of our Sweet Mighty Z and I am thankful Lexi gave her mommy to me. Since Lexi has gone to heaven her mommy has picked up Lexi's torch you can find out what Lexi and her mommy have been up to here.




Because of Lexi I was fortunate enough to find Isabel. You well never know a little girl with as much fight and heart as sweet Isabel and the mommy who fights for her.



          Here is Isabel's Story





I always knew growing up that I wanted a big family. When we found out I was pregnant with my fifth child my husband and I decided that I would have my tubes tied. Five was a good number and I felt we had contributed our share to society. Well apparently God had other plans. During my c-section my doctor was unable to find one of my tubes so we decided to fore go the ligation.



 Well 8 months later we decided we wanted one more. We had 3 boys and 2 girls so we said why not, one more girl to make it even. We tried for a few months with no luck, then we tried Clomid to increase my ovulation, well 2 months of that was enough for me. The side effects were way too harsh. After another 3 or 4 months we decided to leave it in God’s hands. Well, three days before my 31st birthday I got a positive pregnancy test. This is where our journey began.


From the beginning this pregnancy was different. I bled on and off for the first three months and was terrified that I would lose this pregnancy. As we approached the second trimester the fear started to ease. I soon found out that we were indeed completing our family with a baby girl an even team of three and three. Weeks were turning to months and slowly I started to feel uneasy.



 Isabel was not as active as my other pregnancies but the doctor chalked that up to my anterior placenta. He said I probably couldn’t feel all the moves because my placenta was in the front of my uterus and not the back. I tried to accept this but my mommy instinct knew better. I always loved being pregnant but with this pregnancy I did not feel the same. I didn’t FEEL pregnant, I couldn’t excited and I had an overwhelming feeling of doom.



I knew I was at a high risk for complications with an anterior placenta and a previous c-section scar, I really thought I was going to die and not get to see my little girl, I thought the fear of doom was about me. Well, I was close but not quite. On a snowy morning in December of 2013, the 14th to be exact I delivered a beautiful 7lb 8oz baby girl via c-section. She would change my life from the moment she was born. Imagine being strapped down to an operating table and hearing the words “can I get some help with this baby!!” My baby girl needed to be resuscitated. They got her breathing gave me a chance to kiss her and whisked her off to the NICU. 24 hours later she got the all clear and was in my room, this is when I noticed my baby girl was special.


 You try to convince yourself as a parent that the little things you are noticing are OK, because every momma wants her baby to be OK. The more I held her the more I noticed, a floppy ear, clenched fists held against her chest, and something was just different in her face. I will confess I was sad, I was confused and I tried to cover up her differences. Not because I was ashamed but because I did not want anyone looking at my little girl in a different way. People can be cruel and I was not ready for the questions or remarks. The doctors assured me she was fine and we went home 3 days later.


 All was not fine. At 5 days old Isabel coded at home, we started chest compressions, rescue breathes and called 911. I will never forget looking at my little girl turn purple and thinking I was going to lose her. Well that night I cried to her in the hospital and said how sorry I was for not being more accepting of her differences and for being scared about having a special child. I promised her if she pulled through this I would be her number 1 advocate and the most amazing mother to her. Well baby girl listened and 2 days later we were sent home with a diagnosis of an ALTE Apparent Life Threatening Event. The doctors assured me this would not happen again.



Well it did happen again and again, we know now that she had APNEA and seizures due to her diagnosis. We ended up in the hospital again for failure to thrive at 3 weeks old. We got a consult from nuero, the first thing the neurologist asked was if anyone ever told us that Isabel had dysmorphic features. No, but we knew that and we were telling people all along that something was wrong. At 5 weeks old Isabel was admitted to the PICU for uncontrollable seizure and had to be

intubated.


I remember rubbing her forehead and crying and telling her how sorry I was that this was her life. I thought this was the end, she was intubated, she couldn’t breathe on her own and the seizures would not stop. They finally did stop 5 days later. Now we were waiting for her genetic testing to come back. The next few weeks are a blur of more consults, more abnormalities and then a diagnosis. Patau Syndrome, Trisomy 13. As I sit here crying I will never forget that day, I remember researching and scouring the internet and everywhere I turned were the words “incompatible with life.” I remember looking at my husband and telling him “I can’t lose her.”


Isabel has the mosaic form, so only 20% of her cells have an extra 13th Chromosome. She does not have any major heart or brain issues, the doctors were honest and said they just don’t know. They don’t know enough about mosaicism, they can’t give us a definite prognosis. Her geneticist was very adamant that she does not have any life shortening abnormalities, but of course with her underlying syndrome you just never know. Isabel is 2 ½ now. She has seizures, she is trached and g-tube fed, she has sever cognitive impairment, but she is here and she is a fighter.

Isabel will be attending pre-school in the fall and I think she will do great. There are days when I can look at her at almost forget about her syndrome. Those are the days I love the most. Then the moment will hit when she seizes, runs a 105 temp, or just gets sick. Those days are unbearable. I cry and I fear and I always wonder if this is it. I never bought bigger size clothing for Isabel, and I never allowed myself to think in the future. I often wonder what will happen when it comes time for her to go.


 I wonder if she will feel it, will she know she is leaving us, will she be sad or scared. Through my tears I type this because it is a though NO PARENT should ever have to face. I love that little girl with every inch of my being.


I confess I get angry with Trisomy, I want more for her, I want her to experience everything life has to offer. I wonder how Isabel would be without it. What would her personality be like? What would she want to be when she grows up? Would she want a lot of kids like me? I will never get the answers to these questions. Yes, I am angry but I am also thankful. Isabel is here and she is fighting and she is living. Then I realize Isabel had the best of everything, she knows nothing more than love, happiness and comfort.


She gets more heartfelt love from her parents and her amazing siblings than most people get in a lifetime. Her Trisomy does not define her, Isabel charts her own course. She has taught our family to love, to enjoy and to LIVE!! The little things are less important in life now. The dishes can stay dirty long enough to watch a family movie, the living room can stay cluttered so we can camp out on the floor. Memories are what life is made of. I still don’t know what the future will hold for Isabel.


Honestly, do any of us know what the future holds for us? They are children that pass suddenly and parents who wish they had more time. Thankfully I have the knowledge of the unforeseeable. I know to enjoy each moment and make the best of it. I try not to allow my thoughts to wander to far, that would just drive me crazy. Every time I hear of a child with Isabel’s syndrome dying the thoughts flood me again.


Many of friends are on the other side of this journey, their children are playing together in heaven. I find strength in them and admiration, I know when it’s time they will be rocks. I have a friend whose daughter is mosaic like Isabel and she is 25, I find her hope in her and she has become one of my closest friends. I will love Isabel and care for her for as long as she allows me to. I know I was chosen to be her mom for a reason and I embrace it. I am a better person and mother because of Isabel and I could never thank her enough for that.

 My little girl has special needs and I am a proud special needs mom!!01 02 12

Not Quite the Ritz

Making your hospital stay comfortable for everyone can be quite a challenge, even for a scheduled stay, as emotions are high leading up to the departure.  But the overnight stays that begin with a ride in the ambulance…that is a whole other problem

 

When Mighty Z was born and (finally) came home, every time we had an emergency, I was lucky to remember to bring my purse.  Now, twelve years later, I calmly pack our bags in an emergency and packing  for a scheduled stay has become second nature.

 

So what do you pack for a hospital stay?

 

First, I think about hospital smells that trigger lots of post-traumatic stress (PST) and I try to decrease the “smell of the hospital” in our room. When Mighty Z goes into the PICU or just the Vent Floor (the floor of the hospital dedicated to children who are on ventilators) we bring her own hospital gowns -- they are prettier, softer, smell like home -- and as Mighty Z sweetly appreciates that not everyone’s hinny(although Mighty Z does use another word that rhymes with grass, however this is a PG blog so we will use hinny)  has been rubbing all over it . I found some beautiful ‘Mighty Z approved’ hospital gowns from Annie&Isabel. She loves them, as they button on the arms and tie securely, so no private business is showing or hanging out.  They are beautiful soothing colors and they have pockets!

 

Another way we combat the ‘hospital smells’ is with our own sheets that we bring. Mighty Z likes them to coordinate with her hospital gowns. Think about this…when you are sick or in pain, don’t you just want to cuddle in your bed or on the sofa with your blankets? Well, with that in mind, we bring Mighty Z’s sheets and a blanket so we feel just a bit more comfortable. Mighty Z calls her orange blanket ‘puzzle’ and her purple blanket ‘Mister P.’

 

The second thing we bring when staying in the hospital is Ipad, Kindle and computers. It is SO BORING in the hospital! You sit, sit, sit, unless you are Z then you lay, lay, lay. Of course, you’re busy when the doctors are doing rounds and shift change, but other than that, well, it’s boring! Visitors are not just encouraged, but they are begged to come for a visit and long stay! If you don’t have an Ipad, Kindle or computer, most hospital’s will loan you one for FREE -- pretty nice, huh?

 

The third thing that we bring is snacks. Yes we all know no food in the PICU, NICU, CVICU or NTICU.  But I smuggle stuff up all the time and I am very careful to hide my chocolate eating, but hey, I am stressed and need a little help from my friend Mr. Hershey.

 

Being in the hospital is tough enough, especially if it is compounded with all sorts of stress and emotion. Most mothers will tell you that when you are at the hospital with one child, you feel guilty about the other child(ren) you have left behind at home in the care of others.  When you leave the hospital to spend time with the other child(ren), then you feel guilty for being home and not at the hospital. The only way Mighty Z’s daddy and I have been able to lift a bit of the guilt is with what we call the ‘changing of the guards.’ Mighty Z loves the ‘changing of the guards’ and so does Lala.  I stay with Mighty Z all night until about 11am when Mighty Z’s daddy brings Lala up to the hospital so she can see her sister and know that she is alright and that Lala is part of the team. I take Lala home and Mighty Z’s daddy stays with her at the hospital. Lauren and I go have lunch together come home and watch a movie (during which I always fall asleep)! Around three in the afternoon, Lala and I head back up and the changing of the guards happens again.

 

Finding a rhythm that works for the entire family, for those in the hospital and for those back at home, is import for everyone and ensures family bonding time can take place even during the stress of a hospital stay. Bringing the comforts of home to help drown out the hospital environment can, as Mighty Z says, feel as good as knowing you aren’t wearing a hospital gown that someone else’s (grass) hinny has been rubbing all over!

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