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.

Edited by Emily Joy Minich01 02 12

I RUN 4 Z

The other day one of my beautiful friends suggested I look into a group called I Run 4 Michael for our group Hope’s Seed. I looked at the website and debated about it. Why? Well, I truly don’t know; however, I looked at the site again after a great night’s sleep (finally!  Mighty Z’s alarms went off only seven times), and then I was amazed and excited about I run 4 Michael. This group pairs a runner with a person or child with a disability, and the runner runs for that person or child and their disability. This is a quote from their website:  “The mental and emotional encouragement for both runner and honorary runner is proving to be a whole new level of motivation and awareness.  Runners are able to find a whole new sense of purpose in their running while sharing who they are running for and bringing awareness to diseases and disabilities of all types.”  

I thought this is a great concept, but I needed to try it out for Hope’s Seed to make sure this would be something amazing. My first thought (I know, I know we have been down this road before): “I can’t use Mighty Z, she isn’t special needs!” And then once again I had to slap myself and say to myself, “Momma, wake up and smell the coffee!  You hook up your kid to life support machines every night, you recently almost lost her, and she has had to have 2 cardiac pacemakers implanted within less than a week; what does it take for you to realize Mighty Z has special needs?!?”  Honestly I have no idea why I wrestle with the fact that Mighty Z is indeed a Special Needs child-- I just do. I think that it is hard for us all to say those words.

Anyway, after I jumped off the bus o’ denial, I slowly made my way back to the bus o’ reality and asked for a match for Mighty Z. It only took a couple days for Mighty Z to get her Mighty match.

The very day Mighty Z was matched with Beautiful (Beautiful is the name Z and I came up with for our beautiful runner), Beautiful ran for our Mighty Z and CCHS (Congenital Central HypoventilationSyndrome). Beautiful made a shirt, letting all who saw her know that she ran for Z.

Mighty Z was super excited about this and had me send Beautiful encouragements along the way as Beautiful ran in the Spartan Race and the Zombie race. Beautiful sent Mighty Z pictures from the race letting Mighty Z know that she was thinking of her as she ran.

The interesting thing is that Beautiful struggles to breathe!  She has COPD, so a common bond was instantly built between our runner and Z.  (Although technically Z doesn’t struggle to breathe, she just doesn’t breathe…. but the breathing thing is the common factor.)

I Run 4 is an amazing group, and Mighty Z and I feel a since of pride that Beautiful runs for Z. Not only is Beautiful spreading awareness about our Mighty Z she is also spreading awareness about CCHS (Congenital Central Hypoventilation Syndrome ) which is what means the world to us.  

Mighty Z always say's "there isn't and ounce of quit in her" and Beautiful shares that same tough girl motto


 Edited by Emily Joy Minich

01 02 12

plans I have for you

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

 

Sometimes it is easier to quote this scripture than truly to let it resonate in your heart. I knew this scripture by heart as a little girl, but when I read it again after my baby was trached and placed on a ventilator, it was hard for me to believe. 

 

 

 I could not see how God had plans to prosper us, to give us hope, and to give us a future when the future looked so grim. Every doctor that came and saw my sweet Mighty Z shook his head and said there was no way Mighty Z had a future, and no one had even a glimmer of a plan. 

 

 

Only one little man from India who also was a doctor said, “Don’t worry, momma, it will be a miracle.”  That little seed of hope began to grow and I turned my bible back to Jeremiah 29:11 and reread what it said. 

 

 

 I looked up to heaven and I let HIS Spirit pour into me that HE had a plan, HE had a future for my sweet Mighty Z, and HE was sending people my way to water my little seed of hope that the little doctor from India planted inside my heart. I look back and I see the sweetness of God’s love during those dark years.

01 02 12

Adrien & Tavish

I know that I have said it a million times, but it is true. Walking this road as a special needs momma has not just changed me completely by being Lala and Mighty Z's Momma but the truly beautiful people that I have met on this road has created in me something even deeper. Dealing with the regular (or you could say normal) people of this world full of their petty drama has made me turn from that normal world and live in a deeper new normal world full of people like my friend Gretchen if she doesn't inspire you to dig deeper and to look beyond your own little world I don't think anything will. Some of us are called to adopt and some of us are called to help those who do. It is finding where you can help is the key.

During 2011, 26000 children aged out of the US Foster Care system (link: http://waysandmeans.house.gov/uploadedfiles/kelly_rosati_testimony22713.pdf )

 

 

 

Children who age out of Foster Care lack a permanent family support network, lasting a lifetime in far too many cases. 80% of children who age out of foster care are destined to "fail" as adults. These individuals are more likely to live homeless, commit crimes or end up in prison than their counterparts who find family permanence through adoption.

 

Ever since I was a young child, I knew I wanted to build a family through Foster-adoption. I saw documentaries, weekly local news segments, and knew families formed through adoption while I was growing up. I became a single Mom to my biological child in my mid-20s and things weren't easy, but I never gave up on my dream to adopt.

 

 

 

Finding my twins through the Massachusetts Adoption Resource Exchange, Inc. website  was the realization of my longtime dream. I saw their trachs, read some about their development and knew they would be considered "difficult to adopt"- and most at-risk to age-out if they were not connected with a family before age 5. Age 5 is the transition year where kids go from being "sought" to being "unlikely to be adopted"- odds decrease again at about age 10. I knew that medical concerns such as my twins' made them less likely to find a forever family- and my heart opened to the possibility that these two were "my children".

 

 

 

It seems like ancient history now but I was matched with Adrien & Tavish in late February of 2007 and learned all about them at a Disclosure Meeting on March 9. The team was happy that I was familiar with trachs (through my teaching career) and that the information they gave me did not frighten me off. I met them soon after the meeting and held my son in my arms as he snuggled into me to sleep while my daughter watched & played nearby. That first day cemented their place in my heart and they arrived home in June & have been thriving & running me ragged since.

The number of children living in foster care in FY2011 is estimated at about 401,000. The majority of these children are in transitional placements- where they live could change as soon as 10 days from any given day. Pause for a moment and imagine the level of instability you might feel if you could be moved 10 days from now and were powerless to prevent it or decide where it is you would go next.

As of the close of FY 2011, just over 104,000 of these children are living in foster care awaiting adoption. The rights of their birth parents have been terminated, they live in transitional placements, and they wait. 104,000 children without permanent parents continue to wait for a family to commit to them. What are YOU waiting for?

 If you would like to adopt beautiful children like Adrien and Tavish go to www.adoptuskids.org

01 02 12

The Operating Room

In the last post I talked about surgery on one’s child and how that no parent wants their child to experience pain and anxiety. Mighty Z’s biggest fear is blood work, and although I have tried to make it better for her, I have failed in that arena.

 

The next part of surgery that brings fear and anxiety is the waiting room.  Each one of us parents who have sat in the surgery waiting room knows what it’s like.  We sit there with blank expressions on our faces waiting for our child’s name to be called so we know that all is ok. We hold our breath as we “try” to pass the time by reading the same sentence over and over in the book we brought. Our faces are covered in worry as we stare unblinkingly at the computer screen.

 

When Mighty Z went back to the operating room, her daddy and I joined the ranks of helpless parents in the surgery waiting room.  After a while Mighty Z’s name was called, and we popped up to go speak with the surgeon who had done the first phase of the surgery. The first surgeon told us what every parent wants to hear, that the surgery was very routine and our Mighty Z did great (whew!!).

 

Next up to bat and doing the second phase of surgery was the Electrophysiologist.  An electrophysiologist is a cardiologist who specializes in the treatment and diagnosis of irregular or abnormal heart rhythms. The Electrophysiologist was placing a loop recorder (picture of the loop recorder to the left) in between the fat and muscle directly on top of Mighty Z's heart. Back we went to wait again with the other poor souls in the waiting room. About halfway into the second part of the surgery, a nurse came out looking for Mighty Z’s momma (my heart dropped into my stomach).

 

The nurse explained to me that I needed to suit up and come into the operating room while Mighty Z was still on the surgery table. You know those times when a wave of helpless anxiety washes over you? Well, that is how I felt; however, courage isn’t a roar, it is a tiny voice that says ‘I will do this anyway.’  I took a deep breath, held my head high, and walked the long hallway to the operating room, where I suited up in my bunny suit and pushed the double doors open.

 

There lying on the surgical table was my baby. Her eyes taped down, her hair wrapped in a cloth, and a tube down her mouth. Some things mommas should never see, and this, friend, was something I can’t get out of my head. I spoke as soon as I entered (to me it didn’t sound like my voice-- it was much too strong for how I felt) I said “You needed me?” And the nod from the surgeon said, “Yes, we need you to turn Mighty Z’s breathing pacers on for us; we do not know how.” Relief mixed with bewilderment washed over me as I took her breathing pacer and flicked the switches.  I looked the surgeon in the eyes and said way too calmly for how I felt, “So how did it go?” From across my baby’s prone body, the doctor explained how the surgery went and what to expect from recovery. I left the operating room feeling a bit shaky and made my way to the safe haven of the surgery waiting room.

 

 

  Fifteen minutes later, Mighty Z’s name was called again but this time it was to say we could go see her in recovery. There she was, my sweet angel, a little groggy but awake so I could see those beautiful eyes. Recovery took some time, but I was happy to be next to her holding her juice and talking to her.

 

 

 

 

 

 

Later after transport came and brought her up to the ventilator floor, my baby slowly fell asleep and I stayed awake watching over my treasure.

Edited by Emily Joy Minich
01 02 12

Keeping My Respiratory-Comprised Child Healthy During RSV Season

I was excited and scared when we finally got to bring our youngest daughter, Mighty Z, home from the hospital.  It had been six long months since she had been born with Congenital Central Hypoventilation Syndrome (CCHS), and during that time she had been trached and vented. Before the hospital would allow us to bring Mighty Z home, they prepared us to care for her and taught us how to troubleshoot problems that might arise.  Her doctors and nurses made sure we understood how important it was to keep Mighty Z, a baby who had been intubated and was still trached and vented, away from every contagious “bug” that tried to bite her.  RSV, the flu or even the common cold, could result in not just sickness for Mighty Z, but in her death.

Handwashing Is No Joke

As Mighty Z’s primary caretaker, it was up to me to keep her safe in a sneezing, coughing, runny-nose world, and I took that responsibility seriously.  After her long-awaited homecoming, everyone who graced my threshold was interrogated as to whether they had a fever, a cough, the sniffles or anything else that might land Mighty Z back in the pediatric intensive care unit (PICU) before being allowed inside our home.  Those who gained entry to the foyer were requested (instructed!) to remove their shoes and sanitize their hands before they could go any deeper into the house.  Despite my precautions, I knew it was impossible to keep all contagious illnesses away from Mighty Z, and I lived in fear of one illness in particular, RSV.

Educate Yourself About RSV

Though RSV infection can occur in people of all ages, preemies, infants and very young children are particularly susceptible.  Older children who are infected with RSV usually have only mild, cold-like symptoms such as a cough, stuffy nose or low-grade fever, while infants under age one are more likely to experience more severe symptoms that result in trouble breathing.  A child who has been trached and vented, or even intubated for even as little as one day, has scar tissue from those procedures in the lungs.  That scar tissue makes such children especially susceptible to having an ordinary childhood illness become something substantially more catastrophic than it might otherwise.
Outbreaks of RSV begin most often in the fall and run into the spring, and the virus is spread through tiny droplets that go into the air when an infected person blows their nose, coughs or sneezes.  In general, RSV symptoms usually appear 4 – 6 days after coming in contact with the virus, and they include:

•       Bluish skin color due to a lack of oxygen (cyanosis);
•       Breathing difficulty or labored breathing;
•       Cough;
•       Croupy cough (often described as a “seal bark” cough);
•       Fever;
•       Nasal Flaring;
•       Rapid breathing (tachypnea);
•       Shortness of breath;
•       Stuffy nose; and,
•       Wheezing

Antibody Shots Buy Time

Even healthy, full-term babies and toddlers can wind up with a breathing tube and on a respirator due to RSV, and her doctors knew what it could do to a child like Mighty Z who had scar tissue in her lungs as a result of the respiratory treatments necessary to care for her rare disease.  In order to help keep Mighty Z RSV-free, her doctors prescribed monthly Palivizumab (Synagis®) shots for her between the ages of 6-months and 24-months, after which point her doctors felt she would be “out of the woods” and better able to fight infections.  Synagis®, a man-made antibody to RSV, is costly both to obtain and to administer, as it is typically given in the Synagis® clinic at a pulmonologist’s office.  In my experience, it costs approximately $1,500 per dose now compared with about $3,000 per dose 10 years ago. Because of the cost, our insurance didn’t want to pay for Mighty Z to get monthly Synagis® vaccinations, and it was only after much arguing that I persuaded our insurance company to pay for the cost of the antibody itself.  There was a catch, though, as their agreement to pay for the antibody cost was conditional upon my agreement to administer the vaccinations to Mighty Z myself instead of taking her into the pulmonologist’s office every month to get shots.
After we negotiated our agreement, once a month our insurance company sent a syringe and two vials to our door.  One of the vials contained powdered Synagis®, and the other contained sterile water.  I mixed the powdered Synagis® antibody with the sterile water to reconstitute the shot, drew it up with the syringe, and then gave the shot to Mighty Z once a month.  Although giving Mighty Z her monthly Synagis® shot was almost unbearable (giving your own child a shot is even worse than watching someone else do it), I did it anyway.  Even though Mighty Z and I both hated the shots, I knew she needed them.

RSV is Serious Business for Respiratory-Compromised Children

When Mighty Z turned two, I was over the moon! Not only had Mighty Z doubled the one-year life expectancy her doctors had foretold when she was initially diagnosed with CCHS (Yippee!!), but also I would no longer have to give her Synagis® shots (Yay!).  Unfortunately, my elation about no longer having to give Mighty Z monthly shots was short-lived, as she became infected with RSV after only a month without shots.  Though she had to spend the next two months in the PICU fighting for her life, Mighty Z won her battle.  Looking back now, I believe that Mighty Z survived RSV infection at age two because of the precautions undertaken to keep her RSV-free until she was old enough and strong enough to win the fight.
If your child has ever been either intubated or trached and vented for any amount of time, tell your guests with sniffles that you’ll see them later. Require those that make the cut to take off their shoes and wash their hands, and put on your chemist and nurse hats to administer RSV shots if prescribed by your doctor and that’s what it takes to get the cost covered.  In short, if your baby has ever been considered medically fragile, sometimes you’ll have to do whatever it takes to increase your child’s chance of beating the bugs.



Sources:
Respiratory Syncytial Virus – Accessible from PubMedHealth, A.D.A.M. Medical Encyclopedia, U.S. National Library of Medicine on September 20, 2012.
MedImmune – RSV Protection - This website, which is sponsored by the maker of Synagis®,  provides information about RSV including who is at risk, how to prevent the virus, and when RSV season occurs.01 02 12

The Well

The problem with special needs parents (me included) is that we desperately want to live a normal life, to fit into society.  It’s not so much the normal we crave, but the fact that no one understands the pain and the hopelessness we feel. No one understands the strength, the determination, and the fight we, as parents of a special needs child, must face on a daily basis.



Special needs moms are so alone and we try so hard to wear a brave face at all times, yet in our own minds we are not as brave as we appear to the world.   Let me describe it this way…It is like we are in the bottom of a very dark Well. At first we don't want to get out because it is too hard to climb. We want to resist the fact that our child has something wrong with them. I remember when Mighty Z was in the NICU…in the beginning I didn’t want to associate with the other parents, simply because I didn’t want to belong to the special needs sorority of mothers. When I go up to the NICU now, that is the same reaction I get from the new moms. They say, “I didn’t want to call you because I didn’t want my baby to be trached and I was hoping this would all be okay.” That, my friends, is when we are at the bottom of that dark Well and we just want to sit there for awhile, to believe, and hope, that we will not have to buy the special needs awareness T-shirt.  



Finally, when we start to accept this journey, and we want to start climbing, we are already so weak from sitting at the bottom of the Well in all of the muck and mire, that we can’t even get half way up out of the Well before we keep sliding back down, landing with a great big plop in a heap of tears and pain. But this time, when we are sitting at the bottom, we feel so alone we want to get out of the Well, but we have no idea how to start to climb up and out. We try again -- digging our fingers into the sides of the Well, breaking finger nails, sweating, straining, and begging to get out, only to slide down once more.



This is when one of two things happens. We either slowly and painfully climb out of that Well by ourselves, or a seasoned  special needs mom that has been walking this road for years, stops to  throw down a rope or a ladder and helps to pull us out and starts to teach us how to navigate this new normal journey that we have been thrust to travel down.



I had to climb out of my well by myself and it took years to reach the top.  I navigated how to walk down this hard road by myself with no map, no compass, and no translation book. I got lost along the way, having to double back many times, and I certainly didn’t know this new language of medical terms. Everyday I would have to go home and translate the day’s conversations.

 I think it is up to us as the older (or more seasoned) special needs moms to help the new special needs moms. To give them the maps, the compasses and the translation books. We need to help pave the way, to shine the light – to throw down the rope-- because we all know that a simple rope to help to climb out of the Well is priceless.



The seasoned special needs moms have to teach that this “new normal” is just a different place. It's slower-paced than the old normal world. It may be less flashy this new normal, but after you've been there for a while and you catch your breath, you look around... and you begin to notice that this new normal is full of beautiful smiles, inch-stones instead of mile-stones…it’s filled witha sense of pride and accomplishment that few children feel at such a young age, and maybe most importantly, the deepest love most humans will never feel.



 But... if you spend your life mourning the fact that you didn't get to be in that old normal world, you may never be free enough to enjoy the very special, the very lovely things  about this new normal world that your little miracle opened your eyes to see and experience.

edited by Linda Kruger

01 02 12

Mighty Z's story of congenital central hypoventilation syndrome

01 02 12

extraordinary people

There is a phrase that I despise, said by  people who do not have a special needs child. It goes like this, “God only gives special kids to special people.” To be fair, I know that people say that because, 1) they do not know what else to say, and 2) They heard it before and think they are paying you a complement.

 

I do not beleive that God is looking down from heaven and saying, “Who is special? Oh, that person is special and I am about to throw them for a loop.”

 

What I have found is that God gives these special children to ordinary people who are full of faults and short comings and then HE turns us ordinary people into extraordinary people.

 

I often wonder if I would be friends with the “old me,” the “pre-Mighty Z version of myself?” I hate to admit it, but  I might not want to be friends with that person. I used get upset if my day didn’t end up the way I had planned, or  if Lala would ruin a new dress with Koolaid, or if we didn’t get into that preschool that was where all the cool people’s children would go. I would even worry  how we were perceived by the other new parents. To lay it out plainly, looking back at the old me, I see my flaws…I see the shallow and selfish me.

 

Yes I am well worn. I am stronger than I ever wanted to be. I have experiences that have been  cutout of my heart and soul.  I have learned to deal with a world that does not understand Mighty Z, and yes, many times, I have had to walk away from it all. I have tolerated pity and scorn from others. I have had well-meaning strangers come up and offer insane suggestions of home remedies that will cure Mighty Z. I have tolerated mothers of children without special needs complaining of chicken pox, being tired, or not being able to go out on a date with their husband that week. I have endured people saying that children like Mighty Z were broken.

 

I thought I was a hard worker, I thought I was anxious about my child. Now I see that I was nowhere near  a hard worker as I am now. Nowhere near anxious as I am now. But for some reason, actually for a very good reason, I am happier now…lighter now. I am more joyful, more ready to give, and much more playful.

Through this extraordinary journeyI have found that both of my children have opened my narrowed eyes, loosened my tight grip, and softened my rocky heart. Lala and Mighty Z have taught me to let go of silly expectations and trivial worries.

 

So what I have discovered in the last 12 years is this truth:  God truly does give these special children to ordinary people and then HE takes  us from ordinary  and turns us into extraordinary people.

                                             Hanging out with one these extraordinary women,                                   
                                                  and of course eating cupcakes
edited by Linda Kruger

01 02 12

Sloane's Story

One of the most wonderful parts of walking down this road is the friends you meet along the way. I have been very blessed to meet one of the fiercest little girls in the world. Her Momma and I have never laid eyes on one another however we have laughed, prayed and shared many bitter tears together. This beautiful family has had the hardest year but has managed to walk down this road with grace, fortitude, prayers, smiles, and many tears. This is Sloane's story………

January 19, 2012, 6:38 p.m.  I waited…and waited…and waited. I blocked out everything else that was going on in the room.  The bustling of the nurses in the corner, the sound of my husband getting ready to take the first pictures of her, the beeping of the machines.  It all disappeared.  At this moment it was just me and her and I was holding my breath and waiting for a sound that would never come.  This was it.  This was the moment that the Earth stopped spinning and my universe shifted into its new position where it will stay for the rest of my life.  This was the minute that I would draw my last real breath and my daughter would begin fighting for every single one that she will ever take. 

From the minute she was born she was gorgeous.  She looked like no other baby I had ever seen.  She had a mop of black hair and eyes that were entirely too mature for a brand new baby (her first gift from her daddy).  Her mouth looked like a tiny little rosebud placed perfectly under a precious little button nose.  Her hands were tiny but her fingers were long.  She was perfect.  As the doctor placed her on my chest, I cried.  I cried because I was so elated to finally meet this girl and I wept because deep down I knew that something was not right.  I still hadn’t heard the sound that I so desperately needed to hear.  I was waiting on that outburst that newborns have.  That first big wail that says “I’m here and everyone needs to know it”!  I was allowed to hold her for only a few seconds and then she was rushed to the nursery where the nightmare would all begin.

A few hours later we were told by a specialist who had been called in to the hospital that Sloane was having trouble breathing.  Her respiratory drive was erratic and at times nonexistent.  Her heart rate was also an issue.  It would drop down to dangerous levels very quickly and without any warning. They couldn’t seem to figure it out.  She had been intubated and placed on a ventilator.  The next time I saw her she looked like a teeny tiny baby bird placed in a nest of machines, tubes, wires and probes.  No beautiful hair exposed anymore.  It had been replaced by a cotton cap that held medical equipment in place. No wise eyes peeping out.  They were lost under a cloud of sedation.  Her beautiful hands were covered in IVs and tape and dried blood.  That rosebud mouth was pried open by tubes that were held in place by a massive piece of plastic that was spread across that button nose and her little round cheeks.  How could this be my child?  How could this be happening?  How did I make it through a peaceful, uneventful pregnancy to find myself standing over her vulnerable, weak and sad little body in the nursery of this hospital? How, after years of trying to have a baby, losing a baby, fertility treatment, tests, procedures and those awful drugs. How could this be?  Hadn’t we had enough?  I stood watching her fight for her life and she seemed so alone.  We couldn’t even get close enough to really touch her. This is not how this was supposed to happen.  Her daddy and I should be getting to love on her and learn how to take care of her while friends and family poured in to see her and ohhh and ahhh over how beautiful she is.  I had bags just down the hall with her brand new monogram on them that were full of outfits that she should have been wearing.  We should have been getting ready to take that first “baby is all cleaned up and looking warm and cozy and mama has showered and has on makeup and cute pajamas” picture.  The one that you send to everyone you know announcing that your perfect little bundle was here and that she is, in fact, perfect.  I don’t have a single picture of myself holding my baby after she was born.   In fact, I don’t have a picture of me holding her until she is many, many days old.  I wanted to pick her up and untangle her from all of that mess that they had created around her.  I wanted to put her in that precious little pink cashmere outfit that her daddy picked out for her.  I wanted to go home and introduce her to our dogs and start our lives as a family.  I wanted the life that I had been dreaming about for the last few years to start. 

The next day came and in what initially seemed like a string of coincidences, the neonatologist that was in the nursery the night Sloane was born had just transferred from our state’s only children’s hospital.  She had a feeling that she knew what was going on.  She said that she had seen this only two other times in her career and that we needed to get to the children’s hospital right away. In fact, the helicopter was already on its way.  Again, not part of my plan.  We should have been taking her home where she would live happily ever after. Fairy tales come to an abrupt halt when the last thing the doctor says to you before your tiny baby gets on a helicopter is “I’m just not very encouraged by Sloane” and “She just seems sort of lazy, like she doesn’t really care to breathe”.  It’s ironic that in just a few days a friend of mine would create a Team Sloane logo that has the words “Girl Is Fierce” across the front.  Sloane wasn’t lazy, she did care and she WANTED to live.  She’s proven that every minute of her life since then. 

As Sloane makes her way to the children’s hospital via helicopter, my mother, my husband and I make the nearly 3 hour drive.  They didn’t bother letting one of us go with her in the helicopter.  Yet another scary event in my daughter’s life that she had to endure alone.  I remember saying to my mother on the car ride to Little Rock, “What if she has to be here for like a week or something”.  Wow - If I knew then what I know now. Once we got to the hospital we went straight to the NICU and the first thing I see is a tiny baby being wheeled down the hall.  The poor thing was covered in electrodes and there was barely room for her in that bed because most of the space was being used by machines and monitors.  As that baby got closer I realized she was mine.  She had already been attached to more stuff.  She was almost unrecognizable. 

The next few days are a total blur.  I don’t remember sleeping or eating.  I don’t remember talking to the countless friends and family members who waited in the waiting room.  I don’t remember bathing or ever leaving the hospital although I know I did.  I had to.  Because you see, they don’t let you spend the night in the NICU.  So every night parents have to say goodnight to the most precious thing in their world, walk away and hope and pray that someone who is sweet and kind and gentle will be assigned to keep your child alive that night.  Within a couple of days the doctors had tested everything and they concluded that Sloane probably had CCHS (Congenital Central Hypoventilation Syndrome or if you prefer medical slang, “Ondine’s Curse).  Luke and I were confused.  What on earth was CCHS?  What did that mean for Sloane?  And could we just go home?  The doctors did the best they could to explain CCHS but with less than 1500 people in the world who suffer from it, they weren’t experts.  CCHS in very short terms is a respiratory disorder that is fatal if not treated.  It’s a very rare and serious form of central nervous system failure as it relates to the autonomic control of breathing.  In English?  It means that those with CCHS do not breathe when they go to sleep.  While most of us don’t even think about continuing to breathe when we go to bed at night or take a nap on the couch, if those with CCHS do this without the proper life support, they will die.  CCHS never goes away.  It’s genetic; it’s part of every single strand of DNA. It’s not something that is outgrown. So with our permission they sent a sample of Sloane’s blood to a lab in Chicago that would test for it.  It took over two weeks to get the results. 

A lot happened within those two weeks.  Luke and I were allowed to “help” give Sloane her first bath.  She was almost a week old and up until this point was too unstable to bathe.  So there we were: Luke, me and a nurse giving our baby a sponge bath.  I picked glue and goop from the electrodes out of her beautiful hair for what seemed like hours. We carefully wiped her skin with rough hospital issued washcloths.  Then the nurse put a new diaper on her and allowed us to pick out a pair of socks for her.  No cute pajamas, as they would interfere with all of her IV’s.  How’s that for a first bath memory?  It was a far cry from the scene I had created in my mind.  No cute whale shaped bathtub, no delicious smelling Kiehl’s bath wash and certainly no monogrammed towels.  But none of that really mattered because for the first time, we really got to touch her.  We got to hold her tiny fingers and rub her sweet little back.  We got to pat her bottom and tickle the bottom of her chubby little feet.  I held on to that memory for a very long time and it ended up getting me through many sleepless nights.  I wanted so badly to nurse her and have those very intimate bonding moments with her but that was out of the question with an intubated baby. So I started to pump in order for them to at least give her some of my breast milk.  Perhaps one of my saddest moments (as if there hadn’t been so many before) was after a particularly unproductive and painful hour of trying to pump and producing only a few drops.  A nurse explained to me that I probably wouldn’t be able to produce enough milk to sustain her. Due to the lack of interaction and bonding with her, my body didn’t really recognize that there was a baby in the picture.  In order to stimulate my body and remind it that I had a baby, they suggested that I take something with me that smelled like her when I tried to pump. This was devastating to me.  Sloane and I had missed out on something really special and extremely important.  We didn’t get those first few days cuddling and bonding when all of those “hormoney” things happen and as a mama your body makes all of those magical changes that God put in place so that we can take care of our babies.  I didn’t know if Sloane knew that I was her mother but I did know that my body didn’t even know she existed.  I was heartbroken and this was the start of a very hard journey that Sloane and I would go through in order to form the bond that I so desperately wanted but could not, no matter how hard I tried, feel. 

Also during the time that we waited on the results of the test, Luke and I started researching CCHS.  We read everything we could get our hands on and reached out to other parents who have children with CCHS.  We needed to know what we were up against if the test came back positive.  What we found was that while it was not the best diagnosis that we could get, it certainly wasn’t a death sentence.  Unfortunately not everyone felt this way.  We were asked (more than once) if we wanted to let Sloane go.  This is a question that no parent should ever have to answer.  Yes, she was broken and tattered and a complete mystery to everyone, but to her daddy and me she was our miracle and our hero.  The question itself is horrendous but what the question does to the mind of a parent is so much worse.  Imagine being asked this and then think about how that automatically forces you to look at your child.  You can’t help but think that her life is going to be so grim that it’s not worth saving. It’s a good thing this thought was fleeting.  Sloane hadn’t given up and we refused to give up on her.  Her heart rate issues had also started to get more concerning.  She was seen by a cardiologist who determined that a pacemaker should be implanted immediately.  The following morning my baby girl, on her eighth day of life, had a pacemaker placed into her tiny little abdomen.  She sailed through the surgery and was sent back to the NICU within 24 hours. After all of our research, Luke and I knew that Bradycardia (the condition that caused her to require the pacemaker) was a side of effect of CCHS.  In the meantime, Sloane’s bathroom habits were becoming a cause for concern as well.  She was not pooping on her own, yet another sign pointing to the diagnosis that we really hoped she wouldn’t get. 

On February 7, Sloane was diagnosed with CCHS.  In addition, she was diagnosed with Hirschprung’s disease (the CCHS side effect that caused the bathroom issues).  Hirschprungs is a disease of the abdomen which is caused by the lack of nerve cells that help the large intestine function properly. The next day my husband, being a direct match with Sloane, gave several units of his blood because the next morning Sloane would undergo three surgeries at one time and would more than likely need a blood transfusion.  The doctors sent several nurses to Sloane’s bedside to explain to us exactly what to expect the next day.  One nurse brought a book to show us what a tracheotomy would look like.  I couldn’t bring myself to look at it.  Later that night I begged my mom to tell me how the pictures of the babies looked in that book.  I could tell she didn’t want to be honest with me.  Tears streamed down her face and she whispered the word “awful”.  Later on I found out that the book that the hospital was using to show parents how their children would emerge from the operating room with a trach was completely outdated and didn’t really paint an accurate picture of the medical equipment used today.    

February 9 was the most horrific and most beautiful day of my life.  Sloane was walked down to the operating room by her mama and daddy and both sets of grandparents.  She had quite the parade through those halls.  We all wept and prayed over Sloane and for the next few hours sat huddled in a waiting room with about 80 other strangers while Sloane was somewhere down the hall in a cold, sterile operating room getting a tracheotomy, a colonoscopy and having a feeding tube placed into her stomach.   The questions “Why me?”  “Why us” and most of all “Why Sloane” played over and over in my head.  When everything was over and she had been taken back to the NICU we were allowed to go see her.  When we walked into the pod where her crib was, it was like a spotlight was on her.  It was one of the most amazing moments of my life.  I could finally see her face.  No tape, no big plastic piece holding her mouth wide open, no tubes shoved down her throat.  She was laying there sleeping peacefully and we finally got to see all of those precious features that had been hidden since the night she was born. She was even more beautiful than I had remembered and I sat next to her rubbing her cheeks for the next 5 days as they kept her “snowed” so that she wouldn’t move and irritate any of the surgical wounds. 

After that, the remainder of Sloane’s four month hospital stay was really about her getting big enough to use a home ventilator.  Babies have to be at least 5 kilograms (11 pounds) before the doctor will even try to put them on it. On April 14 Sloane hit 5 kilos and on April 18 they put her on the ventilator that would end up coming home with us.  Before they transitioned her to this vent they warned us not to get our hopes up.  No child had ever transitioned the first time it was tried.  The minute they put Sloane on it she never looked back.  So about a month later, after Luke, my mother, his father and I had been through extensive training on how to care for her, we got to take Sloane home.  We were scheduled to be discharged on May 15. On May 14 I packed up Sloane’s belongings and cleaned out the only “home” she had ever known.  I didn’t take much.  I didn’t want to keep anything that reminded me of our time there.  I wanted to start fresh when we got home.  So I packed the bag with her name on it - the one that had once held newborn outfits and her beautiful going home outfit.  It now held medical supplies: a pulse oximeter monitor, a CO2 monitor, a portable suction machine, a home suction machine, all the supplies to change an ostomy bag, a spare g tube for feedings, extra trachs, trach ties, drain sponges and the list goes on). 

Because we live so far away from the hospital, she had to be taken home in an ambulance.  Her daddy rode with her and I followed closely behind.  It was during this three hour ride that things kind of got weird for me.  I had almost convinced myself that when those ambulance doors opened, all of this would be behind us and Sloane wouldn’t have a trach and a vent and an ostomy bag and a g tube.  She would be able to breathe when she slept and she would eat from a bottle and she would poop in a diaper, not a plastic bag adhered to her tummy.  But – when we got home and they unloaded her, nothing had changed.  What was going on?  We’re supposed to be taking pictures next to a stork in the front yard with her name and birth date on it.  We’re supposed to be carrying her in to meet her 4 legged sisters Bayona and Clancy.  We were supposed to take her on a tour of her house and show her the nursery that we worked so hard to make perfect for her.  I didn’t want all of those machines to come in my house with her.  I wanted to take her off of that God awful vent and Pulse Ox machine and throw them back in the ambulance where they belonged.  I wanted to take my daughter in the house and slam the door on CCHS.  If only it were that easy.

We spent the next few months learning how to have a very medically complex baby live with us.  I spent those months just trying to keep her alive and healthy.  I was her nurse now.  From the time Luke went to work until he got home in the evening; I was in charge of her life.  I had the ultimate responsibility of keeping her alive all by myself.  I took my new job very seriously.  In hindsight, I took it too seriously.  I didn’t read to her, I didn’t cuddle with her.  I cleaned her supplies and kept very meticulous notes about what she was doing almost every single minute of the day.  I took her temperature and checked her CO2 every 30 minutes.  There were days when we never left her room.  My husband would come home from work only to find me in the same place that he left me when he went to work. I was scared to death to move her around.  I was scared to death of her.  Period.  As the days and weeks went on, Sloane got stronger and stronger and I got worse and worse.  The heaviness of this life was suffocating me.  I was losing it.  I began to resent Sloane.  I began to resent my husband for getting to leave every day to go to work.  I wanted to escape from this situation.  I knew that I wasn’t good for Sloane.  Yes, I was taking extraordinary care of her.  She was amazingly healthy but that’s all she was getting from me.  I was still nothing but a nurse.   I didn’t feel like a mom. During those days I used to think about things my girlfriends had said about their new babies - Things like “I can’t imagine my life without her”.  I didn’t have these feelings.  I could imagine my life without her.  It was easy.  It was happy.  I wasn’t scared to death every second of every day.  I could breathe. I missed that life.  These are awful feelings to have about your child and even today I cringe thinking back on that time of my life.  I used to beg to God to either give me the things I needed to be a good mother to Sloane or just take me out of her life.  She deserved better.  For several months I didn’t leave the house much.  I only took a quick trip to the grocery store every now and then or a doctor’s appointment for Sloane.  I distanced myself from my friends. I didn’t want to see them.  I was ashamed of the person I was and I was afraid to introduce them to Sloane for fear that they would think she was some sort of weak and fragile freak.  I stopped answering the phone; I made excuses for people who wanted to come see us and her.  Looking back, I’m so embarrassed and ashamed that I behaved this way because these are the people that I needed the most.  These were the people who would have helped me crawl out of that dark hole in which I had placed myself. 

A dear friend who is a psychologist (and more importantly Sloane’s Godfather), connected me with a good therapist which turned my life around.  I began to get used to my new life and embrace our version of “normal” which, by the way, is a word I hate. You see, when you have a medically complex child like Sloane, the word “normal” changes drastically. Our society puts so much weight on being ”normal” but who really knows what that means?  Do I think Sloane is normal?  Yes. She is just like a typical child her age; she basically just needs help breathing when she sleeps.  To me, it’s no different than a child with asthma that needs an inhaler or a diabetic child who needs insulin.  Sloane is going to go to school, do all of the activities that her friends do, go to college, get married, have babies and live a full, meaningful, important life. So yes, my daughter is normal. Well actually, she’s extraordinary and she’s my best friend.  And she is such a blessing to us.  She’s more than I ever could have imagined and way more than I deserve. 

As I type these last few thoughts, my precious baby is still asleep.  I can hear on the intercom.  Over the steady rhythm of the ventilator, I can hear her.  She’s dreaming and that makes me smile.  Every night when her daddy tells her goodnight the last thing he says to her is “Dream big little girl”.  And you know what?  She is.  And so are we.  We’ve just celebrated her first birthday and I know with all of my heart that this child is meant for very big things.  She is going to change lives and make this world a better place.  She’s already started.  The answers to so many of the questions that I had in the beginning – why me? why us? why Sloane? why didn’t I get my fairy tale? are unfolding every day.  And the best part, those don’t really feel like questions anymore. Sure, there are things that will never be answered but I’ve accepted that.  It’s ok because now I feel blessed, not burdened. My heart is full.  My heart is happy.  My baby is perfect. 

I’ve learned a lot of very hard lessons over the last year.  Some that I hoped I would never have to learn and some that I never knew I would be lucky enough to learn.  

Here's what I don't know:

1.  Why God entrusted us with such a fragile child.
2.  Why our Sloane was chosen to bear such a heavy burden.
3.  Why I will never experience the sheer joy of pregnancy, labor or holding my newborn baby in my arms
4.  What it feels like to have a baby sleeping in my house that isn't on life support
5.  How to give up.  I saw a quote recently that said:  “We’ve got three choices in life. Give up, give in or give it all you’ve got.” The first two are not an option. 


Here's what I do know:
1.  My child is a miracle.
2.  Life is fragile yet the human spirit is fierce.
3.  Friends, true friends, will be there.  At the beginning, during the worst of it, and when you decide to

crawl out of that dark hole and come up for air.  And they will be just the same as they were before you found yourself in this place and won't fault you for being forever changed.

4.  Doctors don't know everything.  It's up to us as parents to advocate, research, study and be diligent about the care our children receive.
5.  Life is hard. It's best to take it one day at a time.  Sometimes one hour at a time or one minute.  The challenges put in front of us can be overwhelmingly difficult and scary. 
6.  You have to be kind to yourself.  Beating yourself up isn’t good for anyone around you and the bruises take a long time to heal.
7.  Its ok to cry. - A lot
8.  We absolutely are given more than we can handle sometimes.  But we are never left to fend for ourselves.  He will provide what is needed to get through it.

9.  God is good.

 

 

 

 

 

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A Very NICU Christmas

The reasons I started this blog was 1) to share Mighty Z’s Story 2) To tell you the uncensored  truth of the ups, downs and in-betweens of raising one typical child, and one complex medically fragile chronically ill child. 3) I deeply feel that much has been given to me (in regards to my children, and the journey we are on) and because much is now required of me to give back (Luke 12: 48).

 

Many of you are the ones that truly inspire me to be a better wife, mother, and person. Even ladies who have typical children have stepped in, and shown support in ways that still shock me. My sweet friend takes time when she isn’t working and caring for her own children to edit and pull out of me things that I have buried so deep (trying to protect myself) so that all of you in the special needs world know you’re not alone.

 

One of my dreams has been to make a community of special needs families. I have tried and tried to do this on my own, but it always fell through (Gods timing is indeed perfect). When the group Mommies of Miracles contacted me and wanted me to be the administrator of Texas Mommies of Miracles I was overcome with joy and awe that they would choose me.

 

I was once again scared that this would fall through, but with the help of Mommies of Miracles the Texas branch begin to grow. I have never met so many women who are strong, wise, intelligent, and above all compassionate. These women make me proud to be in this elite sorority of special needs mommies.

 

I had an idea (that I stole from the Ohio Mommies of Miracles group) to bring bagels and cookies to the NICU (neonatal intensive care unit). I threw this idea to our Texas Mommies of Miracle’s. Even though these mothers have children on life support machines, feeding tubes, have seizures, are paralyzed, and other very hard issues. They pulled together and made and bought cookies, bagels, and even bows for the babies to the parents in the NICU at Children’s Medical Center Dallas. Some were not able to come so they dropped off toiletries to other mothers they may never meet.

 

This is the Elite Sorority I belong too, and I am proud to stand next to every one of them.

 

                                                        Merry Christmas My sweet friends

 

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