I Must Remember

My beautiful daughter, my Little Ball of Worry, has many specialists. The list, thus far, has consisted of a Neurologist, Ophthalmologist, Immunologist, Cardiologist, Pulmonologist and a Geneticist. Not to mention the Neonatologist from when she was first born. She has had countless appointments with these specialists. All critical in handling her diverse number of medical issues and concerns. Morgan is not yet two years old and we've run quite the gambit of medical stresses. It's no wonder why I call her my Little Ball of Worry.

To back up a bit. I want you to know how incredible my daughter is. How exquisitely beautiful she is. There are moments with her that pull me closer to the wonders and mysteries of this world. I look into her eyes and I see such depth and beauty. Looking into those eyes gives me the determination to walk this path and to do so with my head held high and straight spine.

Also, she is strong. I don't mean strong as in she can lift very heavy objects for her age, or that she can outmatch her peers in endurance or physical prowess. She can do neither. She is delayed in every way. She struggles with the simple things and milestones which you and I take for granted.

By saying she is strong, I mean she is the most determined little human being I've ever encountered. The things which she endures without complaint boggles the mind. She has defied all odds and continues to surprise and baffle both me and the medical community. She is determined to be here with us. She is determined to live. She is moving forward one inch at a time. And I'm in awe of her.

Each specialist in Morgan's life serves a critical purpose in her health and well being. Not just her health for today but to increase the her chances for the best future possible.

She also has a few therapists helping her with her vision, gross motor development, fine motor development as well as orientation management (this has to do with her vision impairment and moving safely through space).

Not to mention her Pediatrician who has done an amazing job of putting it all together and tracking the different elements of her care and Morgan's overall health.

All-in-all, Morgan has quite the team. And I couldn't do what I do without any of them. Each Specialist, Doctor and Therapist addresses a different need and each contributes to the information and knowledge I need to be able to care for Morgan.

And even I, with the lifelong mantra of "I can do it myself," admits that I can't do this alone.

But I must remember that I'm just as essential to Morgan's well-being. To not forget my own importance. I must remember that because I care for Morgan and the rest of my family, that I must not forget to take care of myself. 

Simple Gifts

'Tis the gift to be simple, 'tis the gift to be free,

'Tis the gift to come down where we ought to be,

And when we find ourselves in the place just right,

'Twill be in the valley of love and delight.

When true simplicity is gain'd,

To bow and to bend we shan't be asham'd,

To turn, turn will be our delight

'Till by turning, turning we come round right.

-Anonymous (Shaker Hymn)

A Lot of Changes

There has been a lot going on in the last couple months that it has taken me a while to sit down and write about it.

Too busy living it I suppose. Between Kyle going to school, Morgan and her many activities and work, seems life is moving very fast with little time for reflection. The biggest changes are because Morgan is growing. She is getting bigger and stronger and more lovely every day.

Kyle is slowly getting used to school and following the rules-something the little stubborn man struggles with-and learning how to read and write, etc. He loves school but also loves deciding what he will do and when. This doesn't go over well with the teacher and we have many conversations between Kyle's teacher, Kyle and myself. Every day I drop Kyle off at school, I cross my fingers and repeat over and over under my breath, "please behave in school, please behave in school." Sometimes he decides he will conform for the day and others he doesn't. Sigh... At least he is learning a lot and has made a lot of friends.

Morgan is growing and at her last checkup it came to my attention that she has officially grown out of her infant car seat. She's too long. I knew that it was coming. That soon we would have to figure out a way to get Morgan around. She's not walking yet and needs support while sitting up. This is why the infant car seat was so nice. It gave her the support she needed while giving me a way to take her places without having to hold her the whole time. I've had to figure something out.

I created a support for her so that she has some assistance while sitting in a shopping cart. This has allowed me to do the grocery shopping with her. I've had to keep the trips rather short as Morgan gets tired but so far it has worked.

And Morgan now has a wheelchair! It looks more like a stroller but it serves the purpose of giving her the proper support while we are out and about. Her Physical Therapist brought it for her and we can hang on to it until we don't need it anymore.

All of this has been a big adjustment. All for the best, but still a huge adjustment.

Being out with her now invites stares and puzzled looks rather than the accustomed "oh, your baby is so cute!" which we always got when she was sitting in her car seat. Now mostly people look at her and wonder what's going on. I knew this would be a part of day-to-day life but still it takes a little getting used to.

Now I drive around with a handicapped license plate which a use whenever I'm with her and I must admit at times I feel a little conspicuous. But as time goes on, this will also become my normal.

Both kids are thriving right now and even though Morgan has been sick consistently with short breaks in between, she's tolerating being sick well and making good progress. It's fun to watch her play and smile. Kyle loves school and is happy. And that's all that matters. 

Parent's Conference at the School for the Deaf and Blind

Last weekend was a busy one. Danny, Myself and Morgan traveled up to the School for the Deaf and Blind in Ogden for the Parent's Conference for the Parent Infant Program for the Blind and Visually Impaired. Kyle got to experience his very first sleepover at his cousin's house. I was a little worried about how well Morgan would handle the short trip but she did surprisingly well.

At the Conference, we listened to speakers, participated in workshops and learned more about CVI (Cortical Visual Impairment). This helps so much with Morgan, giving us a better understanding of how CVI works and the different ways we can help our Little Ball of Worry. We came away with a lot of information and ideas. My head has been buzzing with all the information. Mulling over everything they discussed and how it applies to Morgan.

We were in good company. Parents like ourselves figuring this out. There were a few other parents like us dealing with medically complex children where vision is only one piece of the puzzle.

Odd. But sometimes I envy parents who have only ONE condition to contend with. I know I shouldn't but I can't help it. Not that their situation is in any way less profound or life altering. Just different, and from my point of view, maybe a little less complicated.

At the conference, I got some great ideas for toys and sensory exploration. I took photos of some of the ideas and created for Morgan, with Kyle's help, a sensory board for Christmas when I got home.

I have so much to learn and even as I learn, Morgan is changing. This conference was a nice little break from our usual routine. I'm grateful to the Parent Infant Program for providing us the opportunity to attend. It was a great experience.

And Kyle had an amazing time at his sleepover. He was exhausted when we picked him up.

The Hits

Sometimes I get hit. Not physically (thought it might as well be) but emotionally and mentally. It happens when least expected, at the most unlikely times. I've tried to anticipate getting hit but that doesn't work. I simply have to accept that no matter what I do, no matter how positive I train my thoughts to be, I will get hit.

I believe anyone who've been through, or are going through, something traumatic have experienced this phenomenon. You're going about your day doing your normal routine when BAM! out of nowhere something reminds you of everything you've been through, are still going through. It hits you. And you have to sit down, cry, and/or experience the rage that flows through you with such strength that you feel out of breath. I had a lot of "hits" in the beginning, when it was all new with Morgan. I would see a typical 6 month old out in public and be reminded of how non-typical my girl is. And it hits me. Call me over-emotional but there is nothing else to do but feel it. The pain of not having a healthy typical daughter, the moments of flashback over all the scary situations we've lived through thus far, the scary moments still to come. And knowing, inevitably, they will come. And I cry. Anything could set it off. Anything could cause the hit.

As time goes on, I've noticed the hits not coming as frequently. It's been at least a month since I've been hit with anything. It helps that I'm growing into this life, becoming a little better at navigating the situation as time goes on. Morgan's challenges are simply woven into our daily lives. No big deal. Right.

Except when it is.

I didn't know how rough this last week was going to be. I got hit a lot. I was watching a special on PBS about Brain Consciousness and thoroughly enjoying it till the EEG. They began an EEG to show the brain's activity in sleep. They showed him wearing the scanners, then they showed the EEG read-out. And that's all it took. In my mind's eye flashed all of Morgan's EEGs, her seizures, her brain MRI and I lost it. I had to turn off the show and walk out onto the deck into the chilly night air. Weeping, I kept thinking "This really hurts, and this is really silly. I need to get a grip."  I couldn't watch the rest of the show.

The hits didn't stop there. Morgan had an appointment with her Pediatrician the next day and it was a rough one. Rough because we went over her Care Plan for the following year. We covered every aspect of her care, what specialists she will need to follow-up with, what tests will need to be done, different therapies and what ones we would need to add on. And we will need to get her a wheelchair down the road.

 A hard appointment. Life with Morgan isn't bad when you take things a day at a time, one step at a time. But backing up and looking at the big picture is overwhelming, scary. A LOT to take in. Too much. I got through the appointment but wasn't doing very well by the time we reached the car. The tears came and really there was nothing I could do about it. There is no choice but to feel it. Feel all of it.

Morgan is doing very well health-wise, her seizures are under control, no major illnesses at the moment. So really a good appointment in that regard. It's just hard to look at the big picture.

I feel pretty good today. Not overwhelmed and pretty happy with the way things are. Back to taking it one step at a time and smiling where I can. It's such a strange way to live, knowing that I will inevitably get hit again. 

More Worrying about My Little Ball of Worry

Seizures. I absolutely hate the damn things. No matter how many times you see you kid having one, you NEVER get used to it.

I've been meaning to write about this. But it has been hard for me. Morgan had some breakthrough seizures. I laid her down to sleep one night and it happened. Her eyes popped open and she "froze." I kept talking to her and timed how long it lasted while listening to her irregular breathing. About a minute. Damn. Damn, damn, damn... I was sad and angry at the same time. I thought we would have more time than this. I thought, hoped, that once they were under control, they would stay under control.

I know that we will have to watch for seizures her whole life, but I've heard of kids with Idic 15 sydrome getting the seizures under control, then having them perhaps reoccur a few years later - or not at all. I was hoping she was done with them, at least for a long while. Four months. Four months seizure free. Not enough time at all. And I wanted more time. She deserves to have more time to just be, more time to grow and develop without the constant interference of seizures.

The next morning I was emailing her Neurologist. That night, more seizures.

A peculiar thing happened though. Our dog Molly is my constant shadow when putting Morgan to bed. She stays in Morgan's room while I go through the bedtime routine. Once I lay Morgan in her crib, I turn out the light and Molly follows me out. This time, she didn't. She stayed in Morgan's doorway, curled up and laid down. I turned back to see her laying there staring intently at me. This was not normal behavior for Molly.

Molly is a very lighthearted, timid Border Collie/Heeler mix. She has always detected when one of us is sick before we are aware of what's going on. She has done it with me when I've been very sick, she did it with Danny while he's been sick, and she has done this countless times with Kyle. She would act agitated or engage in some other abnormal behavior. This laying in the doorway and staring at me thing was definitely not normal. She never lays in doorways, and she only stars at me like that when she is trying to get me to do something.

I stared back for a moment. In that moment I realized two things. One, Morgan is going to have a seizure, and my heart just sank. Two, at this moment, I'm not the only one watching her. I'm not alone in this. This last realization was very comforting to me.

Morgan had two seizures that night. The next day I heard back from her Neurologist and we were going to increase her meds gradually beginning that evening.

Now an idea has been planted. The seed has taken root and is sprouting rapidly. A Seizure Detecting Service Dog. I'm now on a quest. I've been making inquiries and researching. I don't have any answers yet but I've connected with a couple other parents across the country who have Seizure Detecting Service Dogs for their kid who also has Idic 15 Syndrome. I think Morgan may be a bit young yet, but I intend to get the process started as soon as possible. It won't be easy, and there will be the question of funding, but I have to find a way to make it happen. The idea of her having a trained dog sleeping beside her would allow me to rest better at night. Knowing that someone other than myself was on watch would take give me a great deal of comfort. It is exhausting living in a constant state of ultra alertness.

In the meantime, how do I encourage Molly's unique ability? I don't know why she detected the seizures in this instance and not all the other times. Maybe they were occurring so frequently before that they seemed "normal." Maybe, because she has been seizure free for four months, Molly was able to tell the difference. Whatever the reason, I figure if she did it once, she can do it again, or at least I hope so.

I was truly hoping that we had seen the last of the seizures. my greatest wish was for Morgan's seizures to be over and done with. During the four month respite, I think I convinced myself that we were through with them. It was disappointing, to say the least, to see her have them again.

Since increasing her meds, I'm happy to say I haven't seen any further activity. Please let it stay that way. 

Turning Five

I can't believe my Little Man is five years old. The past five years, with the exception of the time that Morgan was born to when her seizures were brought under control, went by in a blur. Watching Kyle grow is one of the greatest pleasures I've ever known.  I've cherished every moment. I remember holding him when he was just a baby thinking that this wasn't going to last long, that he wasn't always going to be this little, and that I better enjoy each stage of growth he travels through on his way to adulthood. Even when he has driven me to wits end, I can't help but feel the tug at my heart every time I look at him. I never imagined how much joy he would bring into my life. Even when he tests me, even on the days when I truly look forward to when he's in bed, my life is fuller and more wondrous than I ever thought possible.

There are many big milestones in my life. When I got married. When I earned my degree. But nothing else has changed my life, changed me more, than when Kyle opened his eyes for the first time. My life is divided in to two timelines, pre-Kyle and post-Kyle. My life before becoming a Mom and my life after becoming a Mom. He has eradicated the unnecessary and sharpened my focus to include only what's important and leave all the rest behind.

He starts Kindergarten next week and I'm excited for him but sad at the same time. Thus far I've been teaching him Preschool at home. With the doctor's concerns about Morgan's immune system and her ability to fight of any sickness, sending Kyle to Preschool was impossible. So Kindergarten will be his first experience with School, adding a new facet to our lives. And he is READY. I'm not so sure that I am though.

I love my Little Man more than I can say and I'm so grateful to have him. I love his kind heart and independent spirit. I look forward to every new moment, every new step.

Here are some things that Kyle has said to me that I think you may enjoy:

I'm dragging myself through the day and I ask out loud to no one in particular "Why am I so completely exhausted all the time?" To which I hear Kyle reply from the next room, "Because you are Mommy."

Kyle is now into bugs. We now have a bug jar that sometimes contain live creatures of one kind or another. One day after weeding the flowerbeds with Kyle, he comes in with three snails. One big one and two baby ones. I ask "What are their names?" Kyle answers, "The Daddy snail is Snake and the little ones Meeko and Yoki."

"He's a great hero!" Kyle says this about every action figure he has.

He loves the Angry Birds game, but for some reason, despite knowing the real name of the game, he insists on calling it "Angry Chickens."

He used to make up words for everything rather than be bothered with using the real name. I don't know the reason why or how he came up with these. Chocolate milk was "chosh," his favorite blanket was his "soup," and our dog Molly was "Bah," to which she responds and is used as a loving nickname.

One day we were driving to the hospital for one of Morgan's Neurology appointments. On the way there we saw an ambulance just outside a restaurant as we passed. The lights were flashing and they were bringing someone out on the gurney. This distressed Kyle. "Someone's in trouble?" he asked. "Yes, someone got sick and needed help and the ambulance is there to help them." I explained. Kyle got really quiet for awhile. Then he says "Maybe I can be a doctor when I grow up then I can help." This got to me a little. "Yes, maybe you can."