Warning: Grocery Shopping

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Grocery shopping has always been a challenge for our family.  Let’s just say Elizabeth lacks in the proprioception and grace departments. Her tendency to stand smack in the middle of the isles isn’t usually received well by those who are making that “quick run” to the store. There have been times when she backs up right into the canned soups or stacked fruit or looks at the meat with utter disgust due to her severe food aversion.  I’m convinced that by the time we’re done shopping everyone in the store knows her name because of my constant re-directing.

Today, I left her at home with the nurse while my husband and I took care of the shopping. Sometimes these child-free trips tend to feel like a mini-vacation! As we looked around in a relaxed state I noticed a woman walking around looking for someone. Her face showed concern…. “Eddy, Eddy” she yelled. She had everyone’s attention. Some people stared while others straight up laughed at her. My special-needs-mom instinct told me she was looking for a person with special-needs. Within a few seconds she began to walk in my direction holding the hand of a young man with obvious learning disabilities. I could hear her saying “YOU NEVER DO THAT AGAIN!” As we made eye contact I told her how relieved I was she had found him. Instantly, she began to cry and tell me how hard it was taking care of Eddy. I understood what she meant. The challenges we face are endless, stretching our patience like nothing else and tapping into fears unimaginable. Her rude spectators were clueless! Instead of trying to help her, they laughed. I can’t believe how mean people can be….. I later ran into her again and she told me that Eddy had apparently wandered off trying to find a bathroom without success and decided to “go” in the middle of the store isle. The store manager had assigned an employee to follow them around while she shopped. If you remember, pray for this woman and other special needs parents who handle these difficult situations on a daily basis.

Some days are harder… On those days I hold on to God’s promise in 1 Thessalonians 5:24

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Why Halloween Doesn’t Make Sense to an Autistic…

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In the U.S., Halloween is just the beginning of the end of year holidays that seem to set off the ripple effect of celebrations and parties. As you drive thru neighborhoods you see decorations going up and temporary costume stores popping up everywhere. When our daughter started school we debated on whether or not to dress her up, knowing that finding a costume would be almost impossible. Most princess or super hero costumes are made of frilly polyester and almost all of Elizabeth’s clothes are 100% cotton or a cotton blend, anything different might entail a wrestling match trying to dress her. She knows the difference too! When I introduce a new article of clothing I will tactfully show it to her allowing her feel the fabric, once she is comfortable, I attempt to put it on her. I say attempt because she will usually push it away at least once before allowing me to dress her. Countless times I’ve read that scratchy and silky fabrics feel like ants crawling all over an autistic’s skin so I keep this in mind when shopping, staying away from the “oh-so-cute” costumes available on the market. We got lucky the first year with a soft doable lady bug costume found by ‘chance’ at an outlet store, on our way home from day-tripping. The 2nd year wasn’t so easy. After looking high and low for ANYTHING that might work I settled on a homemade costume made of black clothing and yellow duct tape creating “bumble bee” stripes. I’m sure many thought we couldn’t afford to buy the beautiful Elsa or Ariel costumes that seemed to be so popular that year but looking back I’m proud of my little bumble bee buzzing along in her schools costume parade.

Elizabeth is non-verbal and exclusively fed via g-tube making trick-or-treating senseless for her. We discovered one year that if you don’t say “trick or treat” you don’t get candy so we found ourselves explaining at every candy stop why she wasn’t saying anything. Once folks understood what was happening, they would give her an unusually large amount of candy! As you can imagine, the night ended with a mound of candy Elizabeth couldn’t even eat! My lucky co-workers enjoyed her candy for days on end.

October 31 is just around the corner and I still don’t have a plan on what she will be…. I’m sure something will come to me as I desperately search Pinterest for ideas. I’ve made up my mind to take a sewing class so I can create a suitable costume for my little princess next week.

Dreams and Ambitions

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Everything changed the year Elizabeth was born. I was in the middle of school when I found out I was finally pregnant! After nearly 2 years of trying I decided to move on with my life and leave “fertility” in God’s hands. I was never the studious type but much to my surprise I was getting A-s in my classes. This pregnancy soon became rocky and no longer exciting. At 4 months I developed preeclampsia. My blood pressure climbed on a daily basis, doctor and hospital visits started to become the norm. By the 6th month St. Joseph’s Hospital in Orange became my new residence. I’m not good at math but I knew if I carried Elizabeth full term I’d be spending 3 months in the hospital!  My education was no longer a priority but making sure I did everything possible to keep us alive. Our little lady was born at 6 1/2 months with many medical challenges. After 17 months in the hospital we welcomed her home. George and I began to refocus and think about dreams and goals. It was then the topic of education came up but this time it was for my husband. He went on to complete nursing school and become a wonderful caring nurse. Elizabeth is now a happy and healthy 7 year old full of life and laughter. Recently I finished my education from UC Riverside and look forward to passing the necessary state exams to becone a licensed interpreter.  The Mother in me longs to always be there for my daughter and simultaneously the Dreamer continues to set goals and slowly trek down the road to completing them. Are you a mom with dreams? I would encourage you to not lose sight of those dreams. Set small doable goals that might take years to accomplish but do it. God places desires in our hearts with a purpose. You’ll know if this desire is God-instilled if you can’t shake it off or forget. Pray though the journey of becoming all God wants you to be and give Him the glory for every accomplishment, great and small.

Philippians 3:14 I press toward the goal for the prize of the upward call of God in Christ Jesus.

The “Providers”

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Oxygen, trachs, suction machines, catheters, g-tubes, extensions, syringes, chucks, diapers…. If you had to choose one, which could you make do without?? I bet your answer is: NONE! When you are parenting a child with special medical needs you know how important ALL these items are.  You set reminders on your phone, tell your family members to remind you, save bulky packaging and leave in a place so it’s in your face and you don’t forget to place that re-order. The next day you watch the clock closely to be sure you make that call before 5 o’clock eastern standard time because you live in the west coast…. After a brief debate with yourself as to whether you can hold off the ordering one more day you pick up the phone and call. The nice automated lady asks you to clearly state your date of birth; logic tells you she’s really asking for your child’s DOB. After carefully enunciating Maaaaay-eiiiiiighteen-two-thousaaand-niiine she doesn’t understand and instructs you to hold for further assistance. The smooth jazz music begins and you are officially in a Que. The nice lady gets back on and says, “We apologize for the delay. Please continue to hold, we will be with you shortly”. After several minutes a live person gets on the phone and immediately begins the verification process. You give your child’s name, DOB, address, phone number listed and whether or not you’ve traveled outside the United States in the last 6 months. “Are you calling to place an order?” she asks and you say “yes, I need to order more diapers”. “Okay, one moment”. Then there is dead silence. Something tells you the diapers you desperately need will not be shipping anytime soon. The representative gets back on the phone only to bear the bad news: “we will need to get authorization from your insurance company and a new prescription from your doctor”, “how long will this take?” you ask, hoping you don’t have to try to find supplies in the medical supply exchange page on Facebook or Craigslist. As the conversation ends the lady asks if there is anything else she can help me with…. Really? I’m not sure she was any help at all! I hang up and mark my calendar to follow up in a couple days. Most likely my next conversation will escalade to the point of speaking to a supervisor and in about two weeks I’ll get my diapers. Unfortunately this is how it goes every month. Some of our medical supply companies are easier to deal with than others but not by much. I feel bad for special needs parents. Not only do you deal with the “normal” challenges of having a medically sensitive child but you have to face these “providers” EVERY SINGLE MONTH! They provide much more than medical supplies, they provide stress, financial hardships and anxiety.  Lord help us!

9/11 – Elizabeth Comes Home

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September 11th 2009 was a bitter sweet day for George and me. We had spent 116 days in the NICU of the Children’s Hospital of Orange County (CHOC) and cultivated some special relationships with nurses, respiratory therapists, doctors and other hospital staff. These people were there for us during our darkest NICU days, and there were many… Not only were they healthcare professionals, but they were teachers, counselors and friends. The care and love extended to our little family never went unnoticed and will never be forgotten.

As the world mourned for the many victims lost on 9/11 we grew excited with anticipation knowing our daughter was coming home on that very day. By then she weighed a little over 4 lbs. Just to give you an idea, that’s about the same as a 6 apples. She was tiny! Our baby came home with many extras: oxygen tanks, tubing, a compressor, monitor, nebulizers, medications and a list of appointment dates to see a slew of doctors.

The car was loaded with all necessary items including our little baby. I sat in the back seat with Elizabeth while George chauffeured the Queen home. She slept the whole way but I couldn’t keep my eyes off her for fear she would stop breathing. Her lungs were still small and delicate due to chronic lung disease. We watched closely all night for signs of respiratory distress, kept her medication and feeding schedule just like it was done in the hospital. Goodness, her bedroom looked like a mini hospital so it was very hard to relax and grasp that we were finally home.

As always, George and I worked as a team taking turns throughout the night allowing one to sleep while the other administered meds, fed and gave breathing treatments. We had 116 days to plan how we would handle the situation and by the grace of God Elizabeth’s homecoming was a success.

9/11 brings back painful and joyful memories. Every year it serves as a marker of a season that changed my life forever.

Ecclesiastes 3:1-4

To everything there is a season, a time for every purpose under heaven: A time to be born, and a time to die; a time to plant, and a time to pluck what is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance.