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

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

When Faith turns into Denial

When does faith turn in to denial? When Mighty Z was born I had faith that God was going to heal her utterly and completely, (I still have faith that He will heal her, but it is different now,) so much so that I refused to believe that she was going to be trached and be on a ventilator. I truly believed that it was going to be a complete miracle and that Mighty would come home happy, healthy, and whole.  I had visions of going from church to church telling people of this mighty miracle.




After Mighty Z was trached, my bubble popped. I went through a time where I felt God had forsaken me.  It says in the Bible that if we have faith as small as a mustard seed and tell a mountain to go throw itself into the sea it will go (Luke 17:6). I felt that I had much more than a mustard seed of faith but God hadn't moved. I realize now that what I had was denial. I mean really, how can you go through thinking you have a healthy baby only then to realize you have a special needs child without denial knocking at your door?



By the time that Mighty Z came home for the first time, she was six months old. I had come to grips with the fact that this was the way it was and that God had not left me, but that he was helping me get through this.  I then started telling people that, only to hear “You have to have faith that  Mighty Z will be healed!  Don't confess that she has CCHS(Congenital Central Hypoventilation Syndrome).”  All the sudden I started to hear denial knock on my door again. I had two choices at that moment: either to stand up to the truth, which was that my baby had this terrible disease, or to deny that there was anything wrong. I chose to stand up to the truth, but in doing so I felt guilty. My guilt was telling me that I had no faith in God, and that this was not the way I was brought up, and how could I turn my back on faith?



Only then I remembered that when God led the Children of Israel to the Promised Land, He had Moses send out spies.  When the spies came back they did not lie and say that there was nobody in their Promised Land-- they stood up and said ‘yes, there are Giants in the land’ and Joshua and Caleb said ‘there are giants in the land but our God will prevail.’ Once I reread that I realized that even though Mighty Z was on a ventilator and according to the doctors would have to bury her before her first birthday, My God would prevail. (CCHS had no test for it at the time of Mighty Z's birth, and nobody in Oklahoma had seen it, so they had no idea what her prognosis was.  Also there was really no support group so we didn't know Mighty Z would be OK.) And my God has prevailed.  Is Mighty Z healed?  No, not yet, but she is off her ventilator during the day, and she is twelve years old going to school every day. I would say that God has led me out of the wilderness.

I have found that God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people; then He helps the parents to grow stronger through the journey.01 02 12