I used to think 60 would be a good age to die.  I thought it would be best to leave this world before my bones started crackling and the days remaining were too unpredictable.  My children would be grown, I would have made my mark, and I could leave everything clean and tidy.  Then nearing 40 I started over, adding two beautiful children to my family.  The youngest was born with a disability.  Everything changed.

One of my biggest fears as a parent of a child with a disability is I may die early, leaving other loved ones that may or may not be up for such a task to care for my children.  And while this fear is very real, I'm sure I'm not alone in that I also spend so much time worrying about my child's health that I overlook my own health.

When parents of children who are disabled take days off work, we try to make sure we have plenty of sick or vacation hours remaining in case our child becomes seriously ill.  My daughter has Down syndrome and I never know what ugly illness may rear it's threatening head.  For example, we spent the first 2 months of 2014 with Clara in the hospital fighting pneumonia due to several viruses that marched into her system, one after the other.

She has been fighting respiratory issues most of the days of her life.  She had a heart catheterization to close her ASD before she was a year old because her doctor feared she was developing pulmonary hypertension.  She has had unexplained high platelet levels in her blood cells, and the list goes on and on. And so, especially for single parents like myself, it should come as no surprise that while we know we need to live forever, we also find it hard to make time to keep up with our own health.

But the fear of early death becomes even more compounded when the child has two parents, but one of those parents is a sex predator.  For the parent raising the child, who is not a sex predator, now not only do you fear you won't raise your child, you fear the sex offender parent may be awarded full custody upon your death.

This scenario has been given excessive play time in my head, which in and of itself I realize is not good for my own health.

Among those of us who parent children with disabilities it is common knowledge that a child with a disability is three times more likely to be sexually abused than a child without a disability.  Several organizations go even further and specify children with an intellectual disability are actually four times more likely to be sexually abused than children who are not disabled (see http://www.vera.org/sites/default/files/resources/downloads/sexual-abuse-of-children-with-disabilities-national-snapshot.pdf; and from The Arc, http://www.thearc.org/page.aspx?pid=2457).

Being thrown to the mercy of the courts is a scary situation if you've never been through it.  My ex was closing in on being awarded unsupervised visitation with our young children.  Then the police found child pornography on his computer.  Up until that point, the crime he was facing was video voyeurism against my then 16-year-old daughter.  It could have been argued that he was no threat to our children because at 16 my daughter, his step-child, was more physically mature like an adult; therefore, he couldn't be a pedophile.  But when the pornography was found, that argument was no longer valid,  He had been watching videos of baby girls, still in diapers, being raped.

For the next two and a half years life will be peaceful for us as he serves out his time, but the day will come soon when he will be out and he will fight me again for unsupervised visitation, which if that happens will eventually lead to some sort of shared custody; and while my attorney assures me that as a sex offender he cannot get unsupervised visitation, I have read news stories of sex offenders being awarded full custody of their daughters.  I can't bring myself to fully trust the courts. When he is released, my baby girl will be four years old, and most likely still in diapers.

I'm not saying I'm throwing in the towel on fighting to keep my children safe, but their fate is not in my hands.  My own fate is not in my hands.  If God fancies striking me down tomorrow the future for my little girl is filled with threats uglier than viruses and platelet levels.  Those things we can get past.  But sexual abuse, that stays with victims for a lifetime.

I have vowed that this year I will make time and keep up with all my needed doctor visits.  I've seen my gynecologist, I'm scheduled for a mammogram next month, and Friday at work we had a health screen to check our blood for everything that could possibly go wrong and be found in blood work.

I didn't receive a call on Saturday (the physician's assistant assured me she would call Saturday if they found anything), so I have some reassurance that for now I'll be around for a while to raise and protect my children.

Be sure you are taking care of yourself, too--for the sake of your children, disabled or not.

I am realizing that the comments of mostly acquaintances to Clara’s disability are making my skin thick, as I no longer cringe or heat up in anger.  I also realize I am hearing comments that I will be hearing for the rest of our lives. 

The latest one came before the holiday break.  One of my coworkers had sent a Christmas poem to the entire office.  I appreciated her sentiment and so I sent her a warm reply thanking her for giving me reason to smile.  Her response back was to let me know she often thought of me and my Down syndrome child, and that she knew it must be hard on my family.  I was proud of myself as I politely informed her of what a joy Clara is and I told her I wished she could know her so she would understand her disability was in no way a burden to my family.

The people who say these things don't know.  As I stated a few months back in a newsletter article for our local Down syndrome organization, a developmental disability does not make life worse, it makes it different.  It seems that those of us raising children with special needs are the only people that really understand this.  

I work in social services, and on a daily basis I interact with a slew of interesting people.  Today I talked with one who hugely impacted my day, and possibly my life. I was assisting this client over the phone and our exchange was taken off track as an intimate conversation was shared between two people who know.

Her daughter is in high school and has an intellectual disability.  She shared advice with me and she shared difficulties, such as not being able to work because there is no before and after school care for her daughter.  Her daughter is too old for child care centers but too young for adult day care.  I was seeing my future as she shared her dilemma, as I, too, am a single parent.

Then she talked about how fortunate we are and I sighed a breathe of relief.  I have at times wondered if Clara and I are in a honeymoon phase of disability, meaning horrors lie ahead.  Do I find beauty because my daughter isn't even quite two yet? Will I someday see her as a burden and long for freedom? I can't imagine either being true, yet this is a fear that sometimes bubbles to the surface.

Then my client said, “Maybe you know this already, and I didn't learn it until she (her daughter) was five, but we are blessed.” Tears streamed down my face as she continued, “It takes some people years to know it.”  I've known since Clara was born. Then she spoke my words, “Having a child with special needs only makes life different.  And it’s so beautiful. My daughter is beautiful.  I wish people knew.”

 She shared a story I'll never forget. A couple of years back one of the boys at the school her daughter attends had been voted king (of something; of what is irrelevant).  As king he was to choose a queen and he chose this client’s daughter. She stated he went on to be interviewed on one of the local news stations and he proudly revealed that by selecting her he knew that it would be an opportunity for her that she could remember for her lifetime. More recently, my client saw the young man at their local Special Olympics where he approached them and congratulated her daughter for winning an award. She pulled him aside to thank him for choosing her daughter as his queen a couple of years back, but she also told him, “In 40 years my daughter isn't going to remember who you are. But, in 40 years you will still remember her.”  She said, “That was a good thing that you did for my daughter but I believe the experience was even better for you and I think that someday you're going to realize that.”

I don't know why our society understands so little about people with disabilities when there are so many.  I know just as few years ago I, too, was in the dark.  But, I hope when I share stories of Clara, or my experiences with others, I hope that I enlighten someone—or at least peak their curiosity.  I'm living a wonderful life and I have four uniquely different children as evidence. I don't regret a single one of them, nor would I want them to be anyone else.

A good friend of mine told me not too long ago that Clara was lucky to have me for a mother, which I took as a compliment, and then she continued, “But, I can tell that you think you're the lucky one.” Again, I suppose I can take that last comment as a compliment and not try to over analyze it too much because, you know, I know I am the lucky one.

Happy holidays and I pray God blesses you.

Celebrating Christmas: Legs around Clara.  Totally unintentional.

Brothers celebrating Christmas, and being brothers.

Reaping the rewards of Christmas morning: a snowman on a stick.

My sweet sister and I attended Christmas Eve service, Presbyterian style.

My oldest daughter became an adult today.

Baby sister had no objections.

After experiencing the return of warmer weather I had forgotten that only weeks before we were still battling the tight clenches of a long and brutal winter.  My body has an aversion to colder weather so it has graciously adapted to the warmth of the sun these last few weeks--and with the distractions of yard work, margaritas and flip flops it has forgotten to look back. 
 
Then came the thunder.  We didn't have our usual April showers this year, which usually carry into early May.  Wicked weather and tornados have been noticeably absent from our Spring schedule.  So when the rain and thunder rolled in yesterday afternoon their march was met with welcome by the warm street pavement of the city and, closer to home, by my freshly planted zinnias, eager to sprout from their pots. 
 
When the afternoon rain had passed it left behind an evening chill.  I hadn't dressed myself or the babies appropriately for the end of the day, and so on our ritual closing of the work and school day, between buildings and car, we froze. 
 
When we arrived home I prepared some warm soup for dinner.  After dinner I realized we were in need of a few grocery and toiletry items. I put Clara down for a nap.  For myself and Lukas I dug out some warmer clothes, now burried beneath patterned shorts and colorful tank tops.  Skylar didn't want to join us so she agreed to stay home and watch the baby while Lukas and I ventured out.
 
As we stepped out of the car into the parking lot of Neighborhood Market there was a light mist that filled the air. Instead of setting Lukas to the ground to walk as I usually do, because I carry Clara, I held him close to me and we giggled as our faces met.  A strong odor of cigarette smoke had drifted toward us and I imagined the source finding comfort in the warm inhalations of nicotine and tar. It felt as if we had traveled in time to another season and if you had told me it was October you could have fooled me. 
 
As I carried Lukas I realized that he and I rarely had alone time anymore.  It seemed so long ago that he had been the baby--that it had been he and I that were inseparable. And once we were inside I also realized a year or more has passed since that front seat of the shopping cart, where he now sat, had been his.  He was usually delegated to the rear.  I could see he was enjoying my complete focus, so as we shopped for the few items we needed we took our time and talked and enjoyed the company.
 
While there was nothing extraordinary about our venture to the grocery store, the weather had created a moment to treasure.  As a single mother I wish I had the opportunity to travel in time more often. I'll admit it--as a mom I am greedy.  I wish I could go back and pick up evenings lost due to work and household duties. I wish I could have an hour or two to spend with each of my children individually every evening.  I spend too much time worried about lost time. But what last night gave me was the realization that while I don't have it in my power to recreate the lost moments, I do have it within me to treasure the moments as they are given to me, however simple they may be. 
 
I am thankful that today I can hold onto these thoughts and hopefully carry them over into another evening. 

"You should wake up," my mother informed me.  I don't know how deeply I had been asleep as I hadn't had a decent sleep in over a week.  Every night our sleep was repeatedly interrupted as nurses checked numbers and therapists suctioned Clara's nasal passages and throat every two to three hours.  Most nights Clara lived in fear of the next person who would enter our room to declare war on her nose.  I remember wishing desperately that I could help her understand they were trying to help her as she cried and fought with her entire body.  Sometimes I had to be the person to hold her down.  I wanted to scream at them to stop, but logic told me to allow them get her better.

That evening Mom had offered to sleep in the chair next to Clara's bed so I could get a more peaceful sleep.  That was the idea, but it didn't pan out so well. I sluggishly lifted myself from the comfort of the couch on the other side of the room as my eyes adjusted to the low light and blurry figures. I wasn't wearing my contacts.

It was 4 am and the room was filled with medical staff: doctors, resident doctors, nurses, respiratory therapists.  I remained calm as they worked and watched over Clara, discussing options and ideas.  I knew she was struggling with her oxygen levels.

The room was mostly silent as everyone watched the oxygen monitor.  The number dropped dramatically each time she fell into a deep slumber.  The main doctor, who had settled into one of our chairs as he studied the situation, asked me if I was seeing something maybe they had overlooked.  He was desperate for clues that would lead to an answer.  Why was she getting worse?  I was overcome with a feeling of dread.
A panic was building up inside of me.  Was I going to lose my baby?  Were these doctors giving up?

It was about two hours later, after Clara had been transferred to the PICU that I finally let it out as I looked at my surroundings and realized my family was being torn apart.  Lxkas couldn't stay with us in PICU.  I had to stay with Clara and I was afraid I was losing her.  After a short but needed cry I got a hold of myself and we trudged on--for two more weeks.

We had only been a little over a week in to what would become a three and a half week stay.   I was afraid we were going to celebrate her first birthday there, but 5 days prior she had finally been off oxygen for over 24 hours and she got to come home.  Never have I felt a greater relief than the day we walked out the front doors of that hospital with Clara in my arms.

This journey with her lungs isn't over.  We have follow up tests with the pulmonary specialist.  Unanswered questions linger.

I find myself wondering about her oxygen levels when she breaths loud.  I find myself living in fear that she may go back.  These days we live with a lot of demons, but we also live with gratitude because everyone is back home.  We are together.

I knew before she was born she would keep me on my toes.  I even wrote it here.
Happy 1st birthday, Clara.  We'll keep fighting and we'll keep winning.

Since I haven't participated in a blog hop in a while, and being that I am tied down to the hospital and I have some time on my hands, it seemed a good time to jump back in.  This month Meriah is requesting a truth, a tip and a photo.

I have a truth to share that no parent of a child with Down syndrome wants to come face to face with.  It is true that our children are more susceptible to severe respiratory infections, including pneumonia.  I am witness to this fact because we have been battling pneumonia, RSV and mycoplasma for over two weeks in the Children's Hospital.  Because I'm not a clinician I probably shouldn't even attempt to explain in laymen's terms why this is, but, remembering every child is different, even our children with Ds, it could have to do with the anatomical structure of the trachea and esophagus. or it could stem from a suppressed immune system that can be the result of a variety of factors.  If you understand medical terminology you can read more here:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074212/

So, my tip is related to this truth.  If you find your little one in the hospital with a severe respiratory infection my best advice to you is to be patient.  You will probably be there a while.  While children without disabilities may be looking at a quick in and out when they find themselves in a similar condition, a child with Down syndrome is going to heal slowly, and some days it may not look like you've made any progress.  It can be frustrating.  Find people you trust to watch your child during the day if you work, and to give you breaks during the evening so you can run home and take care of other responsibilities.  But just take it a day at a time.  Pushing doctors for answers isn't going to make anything happen any quicker.  Patience.

The last 2+ weeks have been good practice in patience for me.  So, here we are.  Still.  But, having just come out of PICU, she is definitely better.

"You're still here?"

I can't count the times I've heard that question this week.  

It was a week ago Friday when I decided that Clara might need a little help in her journey to feeling well.  I had picked her up from daycare and the workers there had reported to me that she had been lethargic most of the day and wasn't taking her bottles.  

At the urgent care they saw us right away.  Everything happened so quickly, and before I knew it we were riding by ambulance across the street to the hospital.  "She just needs a little help," I thought.  "This will be one night."

Here we are, our 9th night here.  Because she is connected to oxygen she doesn't look as sick as she is.  She doesn't look like she has pneumonia.  She doesn't look like a child who's health would rapidly decline if she was taken home this very moment.  But she is sick with pneumonia and it would be dangerous for us to leave.

She plays, she eats, she takes her bottles--but she only does these things because of the extra oxygen being provided by tubing connected to her sweet little nose.  The amount of oxygen she needs varies drastically from day to day.

The doctors are baffled.  The nurses wonder why this child is still here, and they are the ones that know us and see us after their days off and ask, "You're still here?"  I jokingly reply that we sold the house because we live here now.

I don't remember what it feels like to have a home; to be able to wander from room to room; to have privacy.  

I hold tears back.  I am overwhelmed with worry.  I pray.  

She has to get better.

Parenting, especially single parenting, will always bring challenges.  Just today I needed to take a bathroom break but Clara wouldn't let me put her down without wailing, snotting and releasing the flood gates.  As Lxkas did when he was smaller, she joined me during this most private of private times.

But at the same time I learn a lot through parenting.  It brings me tons of happiness and I've strengthened my ability to be patient.  If you are an inpatient person, spend an hour with a two-year-old.

But most recently, through my children I am finding my way back to God.  That might seem like an odd statement, but let me explain.

Had I not had Clara come into my world, I would still be working a job I had disliked for many years but that brought me lots of financial stability.  Upon learning about Clara's extra chromosome I made a tough and risky decision to leave that position, knowing I would never go back.

Because of recent events I discovered a new career in social work, and it was at that job recently I was talking with a co-worker about church.  I can't remember what led us to this conversation, but I made the careless statement that I couldn't afford to attend church, a reference to the expected tithing and pretentious members.

She quickly set out to set me straight.  She began by explaining that I would be welcomed with love into her church because of my situation (I'm basically poor); that I was one of the fortunate ones who would automatically be welcomed into His kingdom.  Over the course of several minutes I listened to her intently.  I was seated and she was standing in my cubicle staring over me as she spoke.  In her pink shirt contrasting with her dark skin she had become soft and angelic.  I had never noticed before, but she was, at that moment, the most beautiful woman I had ever seen.  She spoke about her relationship with God, and how she set aside extra minutes every morning to spend time with him.  She had no money, but somehow after bringing God into her life she had never done without.

Her witness to me was unexpectedly chilling and haunted me the following days.  It was the following week, at the local Down Syndrome Association Christmas party that I found myself witnessing another witness.

I arrived late and nearly all the tables were full.  I found a spot for Lxkas and I with another family that I had met at prior meetings.  It was a bit chaotic as it was just attempting to wrangle two babes.  One of the catering associates, a server, I think, walked up to our table and asked if she could hold Clara.  I allowed it because it helped with the moment.

She was young, maybe a mere 20 years old.  She was thinking about going to college.  I was surprised when she began opening up to me about how this night had changed her life.  She had recently found her way back to God after battling addiction.  She had been seeking a career path and now believed working with children with disabilities was God was calling on her to do.  She looked at Clara and kept talking about how beautiful she was and she wanted to be a part of this.  I was almost in tears before Lxkas interrupted telling me he needed to go potty.  I was touched by her story but thankful to my rotten for saving me from tears.

And then it was that rotten that made it all finally sink in.  It was the weekend and I was cleaning, or doing some home chore.  I can't remember, but I was busy and I had walked into the kitchen when I heard Lxkas behind me saying, "God is great, God is good."  I turned around and looked at him.  His eyes were closed and his hands were clasped in prayer in front of his face.  "What the...?" I thought.  And then he finished, "and now we eat our food.  Amen."  I was a bit relieved to realize that this was a prayer he had learned at daycare, rather than that God had somehow possessed him, but with the two previous witnesses and now this in a matter of two weeks, it was apparent.  God was calling me back.

A couple of days ago my sister told me her New Years resolution and asked me for mine.  I never make resolutions, and I told her.  But then I realized that actually I did have one.  I said, "Wait.  Actually, I do have one.  This year I'm bringing God back into my life."

I don't know what my future relationship with Him looks like, exactly, but I know what I don't want it to look like.  I don't want to be one of those who is looking to condemn everyone who isn't worshiping Him the way I think they should worship Him.  I don't want to tell people what they need to do to go to heaven.  I don't want to be part of an exclusive "We're going to heaven and you're not" club.  I believe in the love that Jesus taught.  In the end, only God can decide who is good enough.

And wow.  I sound like I believe.  I think I'm preparing to believe?  I've been agnostic for at least 6 years.  I want to believe.  I need God in my life, because without Him I am alone.

I've been investigating churches online.  I think I found an inclusive one but it's 8 miles away from me.  But 8 miles is not that far to find fulfillment with people who might be similar in their beliefs as me.  

I wanted to make today my first Sunday, but snow, ice and unbearably cold temperatures had me deciding last minute this morning to stay in.  I will visit next Sunday.  This is a year for positive change.

Oh, and the investigator sent me an email on Friday.  The DA's office now has our case.  We should know soon whether or not they are going to prosecute.