A Birthday Tribute

From the moment she entered this world, she has fought for everything. In the beginning, she fought to breath and stay with us. She has fought to get well enough to go out in the world, even somewhere as simple as the park. She has fought with her body to sit up independently, to look around and be able to explore her environment. She fought to see. Everyday, battling her vision impairment to be able to understand what she is seeing around her. She has fought for every aspect of her existence. And with how difficult everything has been for her, she still smiles, laughs and loves. She has proven to her family and her doctors that she wants to be here. No matter the difficulty, pain or exclusion she has to endure.

And I see her as nothing less than a warrior.

No  matter what obstacle is placed in front of her, Morgan will find a way through. Even if I worry about how everything will work out, how we will manage. She guides me on this journey and we find our path.

The best advice I've ever been giving has been, "She will tell you what she needs." Advice that came from both our very good friends and from Morgans Development Specialist in the hospital. And they were absolutely right. But I never imagined how much she would actually need.

It's never easy. I worry about so many things. I worry about how she is doing in school. How she is around the other kids and how the other kids are around her. I worry about how family is around her, how she is around family. I worry about the what ifs. Even though I know I shouldn't, they lurk in the back of my mind waiting for a chance to come forward. What if I outlive her? What if she outlives me? And how is it I can have two contradictory worries at the same time? And so many more.

She has such a long laundry list of medical issues that is a constant battle to keep up with, fight and manage.

Right now she is deaf in her left ear. Her ear tube has been having trouble and we are on our second Auditory test, 3rd or 4th appointment with her ENT, and a second round with ear drops -- a different kind this time. She still has an Artial Septal Defect (ASD) in her heart that we are closely following with her Cardiologist. We still have to account for and make accommodations for her Cortical Visual Impairment (CVI) which we follow closely with her Opthamologist. We follow closely with her Neurologist to keep her seizures under control. And not to mention, she is allergic to pretty much everything, all nuts, strawberries, eggs, certain medications and dogs (throwing a big wrench in our quest for a Service Dog). She has had anaphylaxis once and I've had to use her epi-pen. An event I hope we never have to repeat. And many other medical issues, which honestly, would take me too much time to write about today.

With her birth has come a complete change in how I see things and in how I live my daily life. I could be angry and bitter about all the horrible things Morgan has to go through, and believe me, I have my "I feel sorry for myself days." But when she smiles, laughs or looks at me with that gaze of hers that hold bottomless depths, I feel such warmth and love that none of the difficulties will ever change my dedication or sense of purpose in fighting these battles with her.

She wants to be here with us. And I can't imagine our life without her. I'm grateful for the good days and time with her and her brother. She is different, and in turn, she makes us different.

And I hope, makes us better for it.

I want to wish my beautiful Little Warrior, my Little Ball of Worry a very Happy 4th Birthday!

How Simplicity and Minimalism Helps In The Special Needs Life

Simplicity and minimalism are ideas that I've been reading a lot about for almost a decade now. I've

always found these ideas attractive but never been spurred into action by what I read. If you look up simplicity, you will find people talking about how they simplified their schedule or their diet. If you look up minimalism, you will find people talking about getting rid of possessions and living with less. I found myself reading about these topics even more the last few years. I think I was looking for a way to survive. 

Everyone struggles with managing their time, their health and their work-life balance. Everyone struggles with occasionally feeling overwhelmed. I struggle with these things too. Only, there are a few differences. I struggle with getting enough hours of sleep at night because my daughter requires around-the-clock care. I struggle with giving my son the time and attention he needs because his sister takes up so much. I struggle with feeling overwhelmed because on top of work, family and household obligations, I also have to juggle multiple doctor's and therapy appointments, insurance phone calls, on-going training with my daughter's team at school, administering and managing medications and daily care.

I get overwhelmed EASILY. And all the time. Something had to give. And something would give.

It all started with the toys in the garage. Our beautiful daughter, Morgan, was not yet 2 years old. Every time I took out the trash, I would pass by all of Kyle's old push toys and mobility-type toys I stored there. I held onto these toys when Kyle, our oldest, grew out of them thinking that I was saving them for our next little one. There was a pull up toy and a big Mickey Mouse car that Kyle rode all the time and many other toys Kyle used once he had started walking. He started walking when he turned 1 and has been keeping me on my toes ever since. Once Morgan was born, I held onto the hope that she would eventually use these things, despite the rare chromosome disorder, Dup15q Syndrome, that she was born with and all the medical problems that went along with it.

When I was pregnant with Morgan, I looked forward to seeing her play with these toys. And when Morgan was just a few days away from her 2nd birthday, I was reminded of how different things had turned out EVERY TIME I passed them to take out the trash.  

Morgan's 2nd birthday came and went. We celebrated together with family and friends. I felt grateful for getting this far with all the challenges we faced with keeping her healthy and I felt a sense of peace as the gradual acceptance of her limitations sank in.

Not long after her birthday, I was taking the trash out and instead of just passing by the old toys, I just stopped. I just stopped. I stood there, holding the garbage bag, staring at the Mickey Mouse car. The car she would never be able to ride.

She is 2 now. She can't use these toys. She can't sit up yet. Even when she gets strong enough to use these toys, she will simply be too big for them. Will she get strong enough to use them? Yes, of course she will, don't ever think otherwise. She won't ever be able to enjoy these toys like Kyle did. She is simply on a different path. I really should let some other kid get the chance to enjoy these toys.

After standing there for what seemed like a long time, I finally continued on to finish the task at hand. by the time I got back in the house, my mind was made up and I had a plan.

The following weekend, I arranged for Danny to keep an eye on Kyle and Morgan. I went into the garage and began loading the car. The Mickey Mouse car was loaded first, then the small scooter, followed by the push truck, the pull up toy and many others. I took all of it to a gently-used second-hand store called Kid To Kid and sold whatever they were willing buy. Then I donated all the rest. It took me less than an hour to get rid of it all, and I cried all the way home.

The drive home was very emotional. I felt relieved. I felt lighter. Like a huge weight fell from my shoulders. I also felt sad. By getting rid of those old toys, I was admitting to myself that Morgan's journey was completely different than anything or anyone could have prepared us for. I grieved for all the things that were hard for Morgan to do, and all the struggles she was going to face. But I also felt lighter, relieved...

Why had I held on to those toys, and ideas associated with them, for so long?

Soon after, I began examining other things in our garage. What was I hanging onto for a future that may never be realized? What was sitting there, waiting for a someday that may never come? Did I really need this thing, or that thing, or the thing I used once but never again?

I read a book, called TheLife Changing Magic of Tidying Up by Marie Kondo. This book is more about organizing your entire house but I found it to be even more than that. I've liked the idea about minimalism for a long time but never had the tools to incorporate it into my life. This book gave me those tools.

In the beginning of the book, the author has you sit down and write or draw what you want your life to look like. I sat down to do this exercise, and the overall theme I came up with was to simplify. I knew there were things I could not change. But what could I change? I wanted to simplify everything. Starting with my belongings. If it didn't add something to my daily life or somehow make my life easier, I didn't want it. I wrote down where all my time and energy were going, and what I actually wanted to do with the precious little time I had to myself. I got a real clear idea of what my life looked like at that moment and what I would like it to be. Simpler.

Fast forward six months and I had gone through and made a decision on EVERY SINGLE item in our home. With the exception of Danny's and some of Kyle's things of course, I respect their space and decisions on what's important to them. I got rid of so much excess and I didn't even think I had that much to begin with. And every time I did, I felt a little lighter, a little less overwhelmed. My kitchen is simpler, my closet and drawers, Morgan's belongings and medical supplies. My mind is more clear and I can better manage when I'm feeling overwhelmed. I feel lighter and more hopeful. And cleaning is so much easier. I've done more research on minimalism and incorporated a lot of the ideas when it comes to new belongings and what we bring into our home. And down the road, when the time came to move, it was a lot easier.

I didn't stop there. I simplified everything. I began editing my commitments and letting go of the things that just aren't as important as I once thought they were. These new concepts even bled into all my relationships...for the better.

And it all started with Kyle's old toys in the garage.

Making these changes and embracing the ideas of simplicity and minimalism has helped me cope with all the things I can't control. Like when Morgan needs to be rushed to the Emergency Room yet again.

The Transition From Early Intervention To Preschool

I was warned that any major transition was going to be hard. It wasn't that I didn't take the warning to heart, I just didn't think it would be that hard.

I had already experienced placing Kyle into Kindergarten, then 1st Grade. I figured it would be similar to that with the added complexities that make up Morgan. It was that, but so much more.

The Process

It started six months before her 3rd birthday. Morgan had her Physical Therapy appointment and her PT mentioned that I would want to start thinking about which Preschool we would want to send her to since she would be aging out of Early Intervention.  "It's a ways away yet," she said. "But you will want to start thinking about."

And I did start thinking about it. I knew our options would be limited since Morgan herself was fairly limited in her abilities yet. How would she let me know if she was having a hard time? Would the teachers be able to read her enough to meet her needs considering all her medical problems? All this flowed through my mind and more. I told myself to follow the process, and just wait and see. I told myself it would be fine and that she would be fine. Wouldn't she?

The first meeting was schedule 3 months before her birthday. It was called a Transfer Conference and all interested parties would be there to begin the discussion of where to best place her. I think there were about 7 people there if I remember correctly. Maybe more. Each serving a different role. It went well, but I admit that I was nervous when talk began of how Morgan would sit at a table and participate in group activities and my brain kept asking "how?" I remember Morgan was having a good day and was showing the gathering how strong she was, so some assumed she could sit in a chair on her own. Morgan's Physical Therapist and Vision Specialist from Early Intervention were there and helped with some of the clarification. And again I told myself, follow the process. This group of people have worked with kids like her before. This thought gave me comfort, but I was still apprehensive.

Morgan's Evaluation was scheduled for the following month. When the day came, I was prepared for a long afternoon. Evaluations are always tough because Morgan never looks good on paper. Evaluations are always reminders of all the things she can't do. I was ready for that. I was also ready to share everything about her that would make this new team of people understand her better. Turns out I was pleasantly surprised at how thorough they were. They took meticulous notes and asked me so many questions that I began to feel better about the process.

I discussed, in length, with Morgan's Early Intervention Team about her Preschool options. One option was to send her to the Utah School for the Deaf and Blind and the other, to a Special Needs Preschool closer to home. I visited one of them with Morgan and continued to learn and discuss the other. We decided the best option was to send her to the Special Needs Preschool which was closer to home. They would be able to make the appropriate adaptations for her. Less time traveling on the bus and shorter days. Deep breath. I was just hoping that I had made the right decision.

The IEP Meeting

Finally, the big day came. The greatly anticipated Individual Education Plan (IEP) Meeting. This is where we would hammer out the fine details of everything from the Therapies Morgan would receive in school to her Medical Care Plan. I was both excited and nervous. Morgan's Early Invention Team were there and all the members and representatives of her new team as well. I sat down and tried to remember everyone's name and role as they went around the room and introduced themselves. Not included Morgan and I, there were 12 people at this meeting. Good. They are taking this seriously, I thought.

They presented the plan, I asked questions, they modified the plan. I described certain things Morgan would do, Morgan's Early Intervention Team would clarify on things she was doing and things we were working on, developments we wanted to maintain the momentum on.

Morgan would receive Physical Therapy, Vision Therapy, Occupational Therapy and Speech Therapy in school. We decided on the goals and what we would do to meet those goals. The the discussion turned to her Medical Care Plan. The District Nurse and her Preschool Teacher listened and took lots of notes. Finally the meeting came to an end. Completely spent, Morgan and I headed home.

The emails with the many forms and paperwork came through a few days later. Corrections to documents were made and sent, more questions and clarifications,  then my signature on everything. Finally, Morgan was ready to start Preschool.

The Big Day

Morgan's first day of Preschool finally came around. I was a nervous wreck. I wasn't sure how I was going to get through the day. All the work that went into getting her there seemed like it just wasn't enough. That anything could go wrong. I was sending my medically fragile, non-verbal, wheelchair dependent 3-year-old to Preschool. Let's see how she does. This seems like a bad experiment, I thought.

I packed her backpack. Meds, check. Formula and bottle, check. Ankle Foot Orthotics, check. Snack, check. Diapers and wipes, check. Etc. She'll be fine, she'll be fine.

I told Morgan that she was going to school and drove her over. I dropped her off, drove a block away, pulled over and cried. I love this girl with everything that's in me and I now had to trust someone else, or rather a team of someone's, to take good care of my heart and soul.

The time finally came to go pick her up. Of course I was early. I saw her being wheeled out to the drop-off and pick-up lane her legs kicking and squealing in delight. My heart soared. There she is! And she was very happy. Her teacher told me all about how she did and that her first day went really well. I discovered a report about Morgan's day in her backpack when we got home. A report that I would be getting every day of school.

We got used to the new schedule and Morgan let me know that she LOVED going to school. Her face lit up every time we started the drive over.

We survived the transition. Morgan is working with a good team of people. And I'm infinitely grateful for that. And very relieved. Everything is okay. 

Why I Will Keep Telling People About My Daughter With Dup15q Syndrome

I've been wanting to write about this topic for some time but was always unsure where to start. What I want to say forms over and over in my mind, then, just as quickly, dissolves. The angry part me begins and then quiets down. The tired part of me begins then quiets down. The Advocate in me speaks up and is usually the voice that stays, making the right words come. It's the Advocate in me that speaks now.

I talk a lot about Morgan and her having Dup15q Syndrome. I talk a little about my family and how we handle everything. I've asked myself many times whether or not I aught to talk so much about everything. To share so much about doctors appointments, tests, therapies, etc. This question is one that I've visited often, but always, after much thought and consideration, come to the same conclusion: I'm in-explicitly drawn to openly discuss our Morgan. To share her with the world--or at least with anyone who is interested in knowing about her. And time and again, I've seen some incredible results from my efforts to be open.

There are those who do not agree with speaking so openly about medical issues and disability. These things are viewed by many to be "private" and that talking about these things is in poor taste. I can see that.

I also see where many are uncomfortable with disability and illness in general. I'm not sure why this is. Perhaps it's a strong reminder of our own fragility? Perhaps it's being different that makes some uncomfortable. The possible difference in looks, mannerisms and behavior that some have trouble dealing with. Perhaps, it's the different lifestyle of the day-to-day challenges that most simply cannot relate to. While I don't share any of these views, and I don't think there is any reason to be uncomfortable with disability or illness, I can see where these views come from.

There are some who are just plain uncomfortable with the idea of being so open about this Special Needs life we are living.

So here's why keeping everything to ourselves just doesn't make sense for Morgan's situation and our family's well being.

When Morgan's team of doctors, specialists and experts consist of 17 different people, the situation ceases to be private. Every aspect of her is discussed, both the good and the bad. We work with her. I share what's going on with them, they have suggestions for me, and the cycle continues. It's a lot of work. But something amazing happens when I open up about everything. I usually get the help we need. I get the information Morgan needs. Magic happens. If I'm not as talkative one day, or I'm not focusing my energy completely on every facet of her care, her doctor or therapist doesn't get the whole picture. So many times I end up learning about some new technique or therapy available by sharing things I've noticed about her or something I've read--this happens to be how Hippo-therapy came into the picture. I talk way too much. And it has proven to benefit Morgan time and again.

I've spoken to a few med students upon request. I'd like to think that our conversations will somehow make a difference. That by answering their questions and allowing them to learn from us, that they will be better for it. What if one of these students takes a special interest in Genetics or Neurology. What if... Perhaps just wishful thinking, but still... I'll keep talking and teaching.

When you share your daughter's story with all State Legislatures to help lobby for the Baby Watch Early Intervention Program, privacy is the least of your concerns. This program directly affects Morgan and our family. We were only one of many families who participated in lobbying. I'm happy to say that we saw good results from these efforts. This was the first time I had to get involved in politics on behalf of Morgan and I dare say it won't be the last. People with disabilities represent about 19 percent of the U.S. population. If this group was a formally recognized minority group, they would be the largest. Yet they have little to no voice. It's up to family members and care givers like myself to change that. And I fully intend to change what I can.

People get nervous about Morgan. When dropping off and picking up Kyle from school, day in and day out, there are those who may stare. But something amazing happens when I speak openly about her. The stares and discomfort lessens. They see that I'm totally comfortable with talking about her and that affects how they act around her. When you are your daughters' liaison between her and the rest of the world, not talking about her differences as well as her similarities, does her a disservice. I'm not ashamed of her, nor will I ever be. Kyle is not ashamed of her either and introduces his little sister to his friends with obvious enthusiasm. She is different, and that's okay. Not everyone will be comfortable with her, and that's okay too.

I've seen nothing but good come from talking about Morgan. So I will keep talking about her and sharing her story for as long as I have strength to do so.

I Assure You, She Speaks

Morgan is now over 2 years old and the only two words she knows are Mom and Da (Dad). Not very many. Everything else is just babble and noises. Whether or not that gets better over time is anyone's guess. She may, at some point, take off and start adding words like crazy to the scant two she already says. She may go slowly, adding one here or one there. Or, she may never have many words to work with. No one knows and neither do I. I can't even begin to guess.

But what I do know, is that Morgan says so much more than her two known words. She communicates what she needs and feels all the time. You just have to pay attention. Most of her communication is non-verbal. We are trying to teach her sign language. There are challenges with this too. Her vision impairment and her struggle with fine motor skills make it challenging, but she is learning. She now knows the sign for milk, though she doesn't always use it. It's progress.

Have you ever wondered why it's so easy to understand someone while speaking face-to-face? That misunderstandings are more likely to occur during phone conversations? Don't get me started on text messaging. That's a another topic.

"Dr. Albert Mehrabian, author of Silent Messages, conducted several studies on nonverbal communication. He found that 7% of any message is conveyed through words, 38% through certain vocal elements, and 55% through nonverbal elements (facial expressions, gestures, posture, etc)."

The study that Mehrabian conducted was back in 1972 and has been disputed or supported many times over the years. I don't know if these percentages are accurate or not. But what I can tell you is that the non-verbal stuff is pretty important in our house.

Our bodies say a lot. Our words add to what's readable in our posture and movements. We communicate with so much more than words alone. And so this is with Morgan. She definitely communicates differently. Her cues aren't typical. But if you are paying attention, really paying attention, she tells you everything.

I know she is hungry or tired by how tense and irritated she is while playing. How comfortable she is in a new environment with how much she is able to interact with me. I know she wants to be picked up when she straightens her spine a little and holds her bent arms up to shoulder height. She tells me how cool she thinks a toy is by holding it out for me and anyone to see. She says hello to someone she loves by reaching out to touch their face. And she uses her arsenal of facial expressions to convey everything she is feeling.

I know she is saying "I love you Mommy," every time she gently holds onto a lock of my hair when I pick her up.

She may not have many words, but I assure you, Morgan speaks.   

Living With A Child With Idic 15 Also Known As Dup15q in Photos 2

I take so many photos anyway that I thought I would share, again, what it's like living with Morgan who has Idic 15/Dup15q Syndrome using photos. This is a continuation from the first post I did earlier this year.

So again, I share these photos to help others gain an idea of what it may be like to live with the challenges we face, and most importantly, to gain awareness of such rare conditions as Idic 15 Syndrome.

We redid her room. This corner has all the tools we use for her Vision Therapy.

She's standing all by herself! With the help of her Stander.

Hippo-therapy. This is so good for her but she is wiped out afterward.

Danny designed a special shirt he wears to work in honor of her.

Service Dog Application Process. A lot of paperwork.

Getting everything together for a trip to the grocery store.

New equipment! This ToGo Seat has changed our lives!

The new wheelchair. How did we ever get along without it?

Playing with mylar paper.

Had breakthrough seizures. That, in combination with meds increase, caused her to loose all her strength for about a week.

Thumb splints. To keep her from holding onto her thumbs and not opening her hands. Had to use these for a while.

She rolls underneath the table and big brother joins her there.

Getting up on all-fours is tiring work.

Another EEG. I've official lost count of how many she's had. 

We have to add calories wherever we can. Getting her to gain weight is difficult.

Excited!

She finally sits up by herself! A beautiful sight.

Keeping track of everything.

Holding big brother's shield.

New gear! Her bath chair finally arrives in August. It was ordered in April.

Happy girl. So grown up.

My Little Ball of Worry with a halo of curls.

 I also share these photos with the goal of gaining donations to 4 Paws for Ability.

4 Paws for Ability enriches the lives of children with disabilities by training and placing quality, task-trained service dogs. This provides increased independence for the children, and assistance to their families.

And they are trying to place a seizure detecting service dog with Morgan. And we can't do that without your help. Donations can be made by clicking the link below.

https://www.firstgiving.com/fundraiser/rebecca-marcario/morgansdog

A Seizure Detection Service Dog

I've mention before that I've thought about somehow getting a Service Dog for Morgan. The idea was planted in my head by our beautiful dog, Molly. She detected one of Morgan's seizures once. She began acting strange one night after I put Morgan to bed. Molly lay motionless in the middle of the hall, refusing to move, while boring holes into me with her stare. Two thoughts occurred to me at that moment: That Morgan was going to have a seizure and that at the time, I wasn't alone in monitoring Morgan. Molly is NOT and service dog and while I encourage her abilities, I have no idea how to even begin to train Molly to detect seizures all the time. Also, Molly is getting older and I don't think she would be very receptive to new and intense training.

That started this journey, this quest, to get Morgan a Service Dog.

I've spent a great deal of time and effort researching organizations which provide service dogs for people with disabilities and I found that all of them are a little different. Many do not provide service dogs for kids and the few that do have extraordinary waiting lists. During this research, I discovered 4 Paws for Ability. They provide Service Dogs trained for each child's specific needs. Including, Seizure Detecting Service Dogs.

I knew I'd found the organization I wanted to work with.

I began the application process and now, after months of work, I can see the end result. The help that we so need for Morgan.  Her application was a approved and we've started the fundraising process. It is my hope that we can raise enough money to make this happen. 

https://www.firstgiving.com/fundraiser/rebecca-marcario/morgansdog