Reality Check

It's transition time in our household. It's both a blessing and a "curse" that Ella is of a more typical size than most children with her syndrome. We don't have to worry about pushing extra calories or being on the receiving end of disapproving looks from some in the medical community who don't get that most children with CdLS are much smaller; but we do have to deal with mobility issues much earlier than most. And that is where we are.

I had hoped she would be able to move herself around somewhat by this age, but the reality is that she still cannot sit up unassisted. It's not from a lack of trying. No, she wants to go! Badly! But her little body just can't make things work together in the right way just yet. So as she approaches 30 pounds and 3 feet tall, we are forced to transition from "baby" equipment to mobility equipment designed for handicapped children, which means many adjustments need to be made in our home and to our vehicle.

Ella has moved from her floor-sitting high chair to her wheelchair while we wait for her special seat to come in. We still use a carseat and stroller for (the few) trips we make with her out of the house, but we need to add a ramp to our van to be able to use her wheelchair while transporting her in the near future.

We also have a gait trainer coming which I am very excited about. Ella's legs are very strong and this will allow her to "walk" and move around the house on her own, ideally. It is both an amazing and terrifying possibility!

We are also planning to renovate part of our home to make a therapy/play room for Ella and her equipment, which takes up a lot of space. It will also give John and me more privacy when there is a nurse in our home helping us out. Her bedroom remains upstairs which is another obstacle we will have to overcome at some point. But we are managing to carry her up and down for now.

I'm having to adjust to the idea of having a noticeably handicapped child. And it's not that I really care what other people see or think; it's more that I had hoped she would be further along by now. But I also have to remind myself to be thankful that we still have that hope to hold onto as she holds so much potential. We just have to be patient.

Living on the Edge

Today a mom is acting as nurse and doctor to try and keep her child out of the hospital.

Today a mom is sitting at her child's bedside in the hospital longing to take her home.

Today a mom is burying her 5 year old daughter.

These scenarios are common on any given day when you are living "this life". My news feed on Facebook provides stories like these far too often reminding us all that we are never too far from the edge ourselves.

There was news this week of yet another one of our special little friends passing on. I can easily count at least six children since this summer. Tomorrow isn't guaranteed for anyone, but when you have a medically fragile child you are always aware of how things can go downhill in the blink of an eye.

How do you cope? Everyone is different, but here are some of the ways I know of:

Some take medication - you know, "better living through chemistry"? I'm not ashamed to admit that I NEED it to get by, although I wish I didn't.

Some have vices like alcohol, food or cigarettes. It's not anything anyone wants to admit, but these are often the easiest things to access that might relieve some of the stress instantly. Most of us are not very good at taking good care of ourselves. By the time we make sure our children have what they need, there is nothing left most days.

Some rely heavily on their faith, though some wrestle with it. There is nothing worse than seeing your own child struggle so it's no wonder that even those with very strong faith sometimes question why such things can happen to their children.

Mostly, we spend a lot of time venting to and leaning on each other in the virtual world. Chances are if you have a MF child you don't have many friends in real life in the same situation. I believe that the internet has saved many of us from ourselves by allowing us to connect with each other so easily and honestly. I'm really not sure how moms like us made it before things like listservs, discussion boards and Facebook came along.

Thankfully we have each other to lean on when our children are sick or leave us, and to pull each other back when we get too close to going over the edge ourselves.

A Fine Line

One of the things we struggle with a lot is how to balance doing typical things with being cautious of Ella's medical issues. There seems to be a very fine line between being *normal* and being irresponsible when you have a medically fragile child.

Take going to the pool, for instance. I don't normally take Ella to the pool with me because, frankly, it's difficult to take Ella anywhere! But with pool season in full swing I found myself a little jealous of the other families playing together in the water and selfishly wanted to have Ella there too.

We do all of the usual things to get ready for the pool: put on her swimsuit, apply sunblock, get her a sun hat and glasses. But trach's don't mix well with water. Precautions are taken every day to simply bathe Ella, so putting her in a large body of water is risky since the trach tube leads directly to her lungs.

Aside from the fact that we need to be cautious of keeping the water below a certain level (and not dropping her of course!), we have to factor in the conditions we cannot control - like other people splashing and making waves. One little slip by anyone and we could have an emergency on our hands. So you have to ask yourself, is it really worth it?

I think it's like the saying that you've got to "live while you're alive". If you don't have any experiences at all, is that really living? So I'm trying to make a point to do more typical activities with Ella now that we have surrendered to the trach (meaning we've accepted that it's not going anywhere for a while), but it is definitely a struggle.

In a few months Ella will be going to school. Because of her medical conditions, we were given the option of receiving school services at home which was my original plan. But I know Ella will love school; she loves people, and it will be great for her development. Of course I'm worried sick about something happening while she is there or her picking up an illness, but I want her to live as normal a life as she can and experience things that a typical child would. Just don't expect to see me putting her on the school bus and waving goodbye!

Any Given Day

One thing about this life is that any given day the odds of something "going wrong" are not in your favor. Like today. Ella recently had a port placed for easy IV access and we were due to flush it for the first time, which has to occur monthly when it's not in use.

Our attempt at home was unsuccessful so off to the ER we went. For me, this made for quite a frustrating day. My tired and frazzled self loaded up Ella and all her gear and headed for the hospital. While we were sitting there waiting I was watching Ella as she looked around and grinned from ear to ear. She looked very pleased about the "change of scenery" unlike her mom.

As the parent of a developmentally delayed child, one of the things I am most adament about is that I do not want anyone to feel sorry for Ella because of her disabilities. (I discussed this in a previous post about empathy versus pity.)

I actually think we can learn a lot from special people like Ella. One of the reasons I believe she shouldn't be pitied is because she is so happy! Ella doesn't understand all that she has been through. She doesn't care that she has to spend her afternoon in the ER. She's just happy to go somewhere whether it's to the hospital or a party.

Wouldn't life be so much more enjoyable if we all had the ability to not let the stress and complications of everyday life get to us? In my opinion, that is a blessing. And who could feel sorry about that?

Ella in the ER waiting today.

Space Invaders

Having a medically fragile child takes over your house. When we first brought Ella home from the hospital after receiving her trach and the medical supply company started bringing in all of her equipment and supplies I said, "This is an awful joke someone has played on a person who hates clutter!" Thankfully we had recently moved from a two bedroom townhome to a larger three bedroom house or I probably would have run away. Our space had been invaded.

I'm sure most parents feel somewhat invaded by the amount of "stuff" you end up having around after you have a child. In addition to all of the normal things children have, we also have Ella's medical-related stuff piled on top of it. Our living room resembles a mix of romper room and a hospital room with toys and such strewn about alongside a feeding pump, suction machine, nebulizer, pulse ox monitor and CPT vest machine. In the kitchen there is a regular pharmacy with tons of medicines and syringes and feeding supplies. Upstairs in Ella's room there is another suction machine and her ventilator and heater for when she sleeps. Our laundry room houses the monstrous air compressor for when she needs oxygen, and both the closet under the stairs and the one in Ella's room look like medical supply warehouses.

Beyond the stuff, there are people who routinely invade our space including Ella's nurses and therapists. I don't mean this in a negative way, but it's not often that there isn't someone other than just the three of us in our home. People often want to know exactly "how it works" with the nurses so I'll tell you. In the beginning Ella received nursing care 24/7 so there was literally a nurse here every hour of every day. It did take some getting used to and sometimes still does. It's kind of a catch 22 because you WANT them here for the help but you also get really tired of having outsiders in your home all the time. Not that we would want to walk around in our underwear or anything (well, I can't speak for John), but you do have to be mindful that you have "company" and maybe watch the things you say, wear and do.

We now receive 77 hours a week of nursing and can plan whatever shifts we want depending on our schedules. For the most part, we have someone here with Ella for about 8 hours a day on weekdays so that we can work and run errands. On the weekends we try and have overnight shifts so that we can go out as a couple and sleep in which is nice. When the nurses are here their job is to take care of Ella so they sit with her, play with her, suction her, feed her, change her, bathe her, perform trach care, and give her medicines, nebulizer and vest treatments. I have to admit I am a little spoiled since I hardly ever have to give my child a bath. (Bathing a child with a trach isn't the most fun thing to do in the world!)

Some of our nurses even go as far to do Ella's laundry. And they are also good about helping me keep track of her medicines and supplies. But you can become too dependent on the help which is when problems sometimes arise; that is something I have had to learn. There is also a fine line between invading their space and letting them do their job and wanting to take care of or spend time with Ella myself when they are here.

The rare times when it is just me, John and Ella can feel strange. And then of course John and I have to figure out how to divvy up the responsibilities ourselves, but we make it work. Speaking of, it's 9 o'clock and I'm pretty sure it's HIS turn to draw the medicines...

'Can Do' Attitude

I've been thinking lately about developmental delays, mainly what parents of *typical* kids might wonder it's like for us SNPs who have delayed children.

For years I've heard moms talk about the comparisons other moms make between their kids and the questions they get asked like: "Is she sitting up yet?" "Does he crawl?" For some reason those are seemingly appropriate questions to ask another mom for some. Most of the moms I know who've relayed these experiences to me have taken offense to such comments, like their child is being judged, and that the asking mom seems to get some kind of satisfaction out of the fact that her child may be more advanced.

I get asked these questions too - mostly by people that may not see or know Ella personally - and I know they aren't asking in order to compare my child with theirs. I think people are simply curious about Ella's progress based on her circumstance, and that's okay.

Do I wish Ella could sit up by herself at nearly age three? Yes. Would it be nice if she could actually move herself around like she so desperately seems to want to? Of course. But I'm not upset about it. I gave up comparing Ella to typical kids and developmental charts a long time ago. But it was a process.

In the beginning you have hope. Sure the doctors will tell you that she will be severely delayed, but what do they know? Do they have a crystal ball? You still believe that your child might be the exception. All infants don't do much so it doesn't seem any different at first.

But as time goes by and those first milestones aren't reached, reality begins to set in. And as even more time passes, the gap continues to widen more and more. But in my mind Ella can't be compared to any other child, delayed or not. She is unique. She has had her own journey filled with numerous medical issues and hospital stays. She's Ella, and we're living on Ella-time. I just try and focus on what Ella IS and what she CAN DO and what makes her extra special.

Now that doesn't mean that we just give up trying. Quite the contrary. Ella has a rigorous therapy schedule that includes PT, OT and Speech each twice a week (when she's not in the hospital). I will give her every opportunity to excel where she can but that's really all I can do.

So I'm not embarassed about where she is developmentally but what IS uncomfortable are the looks of pity when other people notice how delayed she is. They assume I'm upset about it and that's what makes me feel bad. I don't expect Ella to be like other children, I just expect her to be Ella.

Sunrise

It isn't often that I'm up early enough to see the sun rise. And if I am, I'm certainly not paying attention to it. But this morning I did.

Ella woke up early and with my husband out of town and no nursing, I had to get up with her. After getting her settled I stepped out to the back patio to sip my day old coffee that had been reheated in the microwave and noticed the sun rising. It got me thinking.

A sunrise doesn't quite hold the same romanticism as a sunset. You always hear about watching the sun set. A sunrise doesn't seem to get the same credit.

Lots of people witness the sun rise every day, and in theory it's the same beautiful occurrence, but we don't typically take the time to stop and enjoy it in the same way. Everyone is busy rushing off to work or school or wherever they need to be.

On our honeymoon my husband and I went to Key West. Anyone who has been before knows what a big deal "sunset" is there. We were told of a great location we had to go to see the sunset, on top of a hotel, so at the end of our first day there we made a plan to go. We didn't allow ourselves enough time and I remember us running through the streets trying to get there but when we arrived at the top of the hotel, it was pretty much over.

The parallel to our life is obvious to me. Having a typical child is like a sunset - it's romantic; more people notice and appreciate it. Our first pregnancy, before Ella, ended halfway through and, like our experience in Key West, we got a glimpse of the sunset but missed the big show that everyone else experienced.

Instead, we got a sunrise with the arrival of Ella. It's different. Not as many people rush to see it or appreciate it, but it's ultimately just as beautiful.

Where do we go from here?

***Warning: This post deals with the difficult subject of death.

I've been thinking about this post for several days now. Those of you who know us personally are aware of what has transpired with Ella's health during the last few weeks. For those who don't, to sum it up, we almost lost her on January 19th. As I write this we are still in the hospital but planning a discharge next week: we've been given a second chance.

When you're the parent of a medically fragile child, it's understood that they're mostly living on borrowed time. You never now how much longer you have left and the reality is that you will likely outlive your child...not something any parent wants to think about.

As the realness of what happened has started to set in following the fog of shock and disbelief I lived in for the first week or two, there are so many emotions running through me - gratitude, relief, sadness, and fear to name a few. The rollercoaster is moving so quickly now that I am constantly nauseous. How do I make it slow down?

I imagine it's just going to take some time, but I don't see how we can go back to normal. Things look so differently now.

It's always been in the back of my mind the very real possibility we will outlast her, but I've tried REALLY hard to not think about it too deeply. It's always been "down the road". I was not prepared for coming so close to losing her at such a young age or having to let my mind really explore the possibility...What would her funeral look like? What songs would we play? What pictures would we show? Where would she be buried?

Have I been too nieve thinking we had so much more time? Should I be preparing more both mentally and physically?

I want to give myself enough time to heal, but I don't want to dwell in it either. I think it's going to be a fine line. When I was pleading with God for more time with Ella, I promised Him that I would take whatever it was He wanted me to from this situation and use it in a positive way. So now I'm trying to figure out what that is. The sooner I do, the sooner I can start moving forward.

One of the moms in my online special needs parents group put it this way - our children are on loan to us from God until He needs them back. I guess all any of us can really do is love them as much as possible while they are here. I'm just not sure how I could love her any MORE than I already did.

Battle Scars

We have fought many battles since Ella Grace was born with the numerous illnesses, procedures and surgeries she's had. Her scars are obvious: the hole in her stomach that holds her feeding tube; the one in her neck that holds her trach; the marks on her jaw and tummy from past surgeries; and the frequent bruises and scarred tissue on her tiny arms from countless IV attempts.

Her little body has endured more before the age of three than most people will endure in a lifetime. But she is resilient. She bounces back and likely won't remember the things she has been through for which I am grateful.

As parents, though, we don't fare quite as well.

There is nothing that tears at your heart more than seeing your child suffer. The scars we have from these experiences lie much deeper than the skin. They are burned into our memories and tatooed across our hearts. So how do you cope?

Human beings in general are resilient creatures. We have been programmed with coping mechanisms to get us through tough circumstances. You've seen those amazing stories of survival on TV or maybe played out in a movie where people switch on some seemingly superhuman senses to get through a horrible situation. Well, it's not much different from what happens to us.

People want to know how I handle it all - Ella being sick and in the hospital all the time - and the truth is, not very well! At least not physically. The effects of the constant stress are very apparent to me when I look in the mirror. But we try and take it all in stride and move past each battle after it has ended, even though we know the next one is likely just around corner.

It's just like with anything else, the more you do it the easier it gets. The first time your child has surgery it's horrifying. But by the 7th or 8th time, not that I take it lightly, it becomes more routine. It's our normal. We get used to it, and that helps us to cope.

And I'm glad our scars aren't visible to the eye because I would never want Ella to see them.

A Life Less Ordinary

One thing is certain, our life is NOT normal. I'm not complaining. In fact, I happen to find a lot of humor in how different things are for us...most of the time.

I'm pretty sure that when Ella finally gets rid of the trach and we are able to take her into public more, there will be people shocked to see us with a child. I'll just tell them we've been keeping her in the little room under the stairs for the past three years.

I kid, of course.

Our family outings usually only consist of trips to the emergency room or a therapy session or maybe the occasional special needs function. We hardly ever do *normal* family things. For one, we have to be careful about who and what we expose Ella to and secondly, it's just easier to leave her at home with the nurse than to schlep all of her equipment and supplies with us for a one or two hour jaunt to a friend's house or dinner or whatever.

Recently I found myself out in the world with Ella in the backseat while we had some time in between doctors appointments. I decided it wasn't worth it to drive all the way home and unload her and all the stuff for just 30 minutes. So we went to Wal Mart.

I needed to get a few things so first off I had to figure out how to handle both a basket AND a stroller at the same time. Ella can't sit up in a shopping cart, so I took one of those small handled baskets and hung it on the arm of her stroller. The nice greeter wanted to help me and offered to put us in a large cart. I smiled and said, "That's okay. Thank you! She can't sit up." Too much information? Should I have stopped after "Thank you"? She looked embarassed. I smiled again and said, "It's fine!" to try and ease her discomfort. Oops. Moving on...

We began strolling through the aisles and encountered a variety of onlookers. A few stopped to tell Ella how beautiful she was. And a few just stared mercilessly at her without even looking up at me to offer an apologetic smile aferwards. I understand, she's different. We're not used to being outside of our "bubble" very often.

All in all it was a successful shopping venture. Ella loves to be wheeled around in the stroller looking at all of the people, lights and things. She even got to watch herself in the mirror (her favorite pasttime) while Mommy tried on a few hoodies. And I managed to handle both Ella and the items I purchased simultaneously without a hitch. Success!

Not your typical trip to the store with a nearly three year old though, right? No offense to all you parents of typical 2-1/2 year olds out there, but I've seen you trying to shop with toddlers and it's not pretty! Is it wrong for me to say that sometimes I'm thankful she isn't typical? That I like the fact that she stays where I put her and doesn't pitch fits or talk back to me? Well, I said it. There are some perks to having a disabled child in my opinion.

Also like the fact that I never had to get up in the middle of the night to feed a screaming baby. Since Ella is tube fed the feeding pump can take care of that for me while I sleep or do whatever else. Nice, huh?

And we have a "mute button" for our child. She can only make noise with the Passy Muir speaking/swallowing valve on her trach so if she does decide to pitch a fit, we can basically just turn her off. Like a TV.

And we don't have to worry about finding or paying babysitters. Yes, I complain about our nursing from time to time but I don't take for granted the fact that we are not paying out of our pocket to have someone watch her - a licensed nurse at that.

No, our life is definitely not ordinary but that's not to say it's bad. It's just different, and you have to look for the bright spots anywhere you can find them.