Sweet Sleep.... Issues....

I vividly recall that season of slugging through the days, crying a lot, feeling altogether like I had come to the end of myself entirely, like I had nothing left to give. Why??

If you asked me what one of the biggest challenges has been since K's birth in June 2007, I would probably say..... S.L.E.E.P.

Yes, there were a myriad of doctors appointments which thankfully tapered off some time between 18 months and 2 years.

Sure, there was the sky-rocketing anxiety that threatened my sanity from time to time frequently.

Oh, and there has been the wrestle between frustration and patience as we have tried to navigate our way through the development challenges to find the best balance between forcing and facilitating learning.

Yes. There have been things that have been H.A.R.D.

But, the one constant challenge over the past five years has been sleep. Or, rather, the lack of it.

When our first daughter was born in December of 2005, "sleep skills" was one of those first things I focused on. Whether or not that was a great idea is a discussion for another day ;), but very quickly she became a great night time sleeper and I was thankful.

Fast forward 18 months with the arrival of Baby #2. And suddenly everything was different. And I quickly realized that I was going to grow in my abilities to adapt to a new kinda normal, whatever that would be.

Each situation is unique. For us, K would settle quickly at night, especially after the upheavals of teething had passed. And she would sleep solidly until 12am. After that, it was anyone's guess as to how our night was going to go. Sometimes only awake 1-2 times, and easily settleable. More often, though, I was in and out of her room several times, losing track of how often I'd been out of bed. Many times, especially if she had been awake a few times already, she would be up for an extended period of time, anywhere from 1-3 hours. Thankfully, she was usually able to stay in bed (usually her own, sometimes ours) during this time and wasn't up to play toys or look at books. She seemed to know that night time was for sleeping, not playing, yet her body wasn't fully able to cooperate with that notion!

Since that time I've talked with doctors, pediatricians, therapists and done my own internet research. Sleep issues are a common thread with many families, but can be an ongoing problem for kiddos who have additional challenges to work through.

What has worked for us?

Thankfully, after 5 years of trial and error, I think we've managed to gain some wisdom in this area of our family life and are making progress (though sometimes it feels like we're taking a few steps back!).

A few things we've tried... what has helped... what hasn't worked at all...

The key for us, like most life situations, is trying to discover the root issue of the problem. For K, her body has slightly lower tone than normal, and is more sensitive to things like warm/cold, weights of different fabrics and blankets. For us, we steer clear of flimsy little pretty nightgowns in favor of heavy, warm, flannel jammies or lighter cotton jammies, but always always long sleeves and full pants. We tried the cute little girly nightgowns and for months we barely slept a wink!! When she was really little, the weight of the baby quilt was not sufficient, so I actually took a flannel sheet, tucked it along one side of the crib mattress, tucked her underneath and then pulled it as tight as I could over her shoulders and trunk of her body and tucked it into the opposite side of the mattress. The extra pressure seemed to help keep her settled. This worked quite well until she got too big and too strong ;).

Also, like many young kids, but particularly for those who have an even more intense time processing the world around them - becoming overtired is a recipe for night time disaster. Even at 5 years, she still benefits from a 30-45 minute cat nap --- several days without it and our night times spiral out of control. Combine this with any additional over-stimulation like family vacations, holiday time with family gatherings, adding a third baby to our family, or any such activities, and it can take several weeks to get back on track!!

One other thing we were intentional about for a while was actually increasing the pre-bedtime activity a little bit. Like 20 minutes of wrestling or rumpus play of some sort. The theory is that with lower tone, a body requires MORE activity to satisfy the body's need for environmental input and stimulation. If the body does not receive adequate information throughout the day, it seeks it out at night as a restless sleep. We did find some merit in this theory, however there is some debate as to whether the activity should come earlier in the day (morning) or at bedtime. My guess is that it really depends on the kid.

I have occasionally brought K into our bed, or have slept with her on the couch (when she was still quite little, like before 2 :P, and was teething soooo hard and OH it was tough!). However, we have not found this to be the best long term solution. Mostly because she is soooo snuggly and wiggly and it is hard to get any rest at all then!! What really works well is to store an unused crib mattress under our bed for those nights that are challenging. K shares a room with her two other sisters, and so on those nights where she is more restless and I don't want any other little ones up with us ;), she gets to sleep on our floor. I can settle her as I need to, I'm not losing sleep (literally!) over whether or not others will wake up, and (amazingly) I've learned to sleep through some of the commotion too!!

We have ventured into the realm of medication a little bit. Under the guidance of a doctor, we tried melatonin and also a light sedative, first alone and then in combination. For some people this has worked well. If it works, and it is right with your doctor, then by all means. For us, this did not work at all, but instead made things WORSE! I noticed that K was even groggier during the day, harder to keep awake in the evenings, and even a more restless sleeper from feeling extra tired. With the advice of our pediatrician, we followed the recommended strategy, and I could do it for a couple of weeks because I knew it was a solution we needed to rule out. However, I was glad to give it up, and we haven't tried it since!!

Particularly helpful has been the sleep records I've kept for the past year and a half. It has helped me to identify patterns and track progress with a variety of strategies. And it has been something tangible that I have shown the doctors as I've consulted about how to manage this. But honestly, the biggest benefit has been a visual representative of why I often feel so tired. Like most things in life, even the tough stuff, when it persists long enough it starts to feel normal. And it is easy to lose perspective. Even though terrible nights may become "normal" it is still okay to feel tired and groggy too! Sometimes I forget that and feel discouraged by the fatigue rather than understanding of why it still exists.

The highlights show the nights that have been a write-off (which I consider up 4 or more times, or unsettleable for a period of time). It is encouraging to see the progress that we've made since this time last year (a LOT more highlights!!!). For the month of May even though we're usually up at least once or twice, we've only had one night that has been "rough rough". YEAH!!

Personally, one of the biggest hurdles for me was overcoming the self-pity. For quite a long while, I felt sorry for myself because I couldn't get enough rest. Of course, my fatigued perspective was a bit off, and I didn't realize this for what it was. It came along through sneaky thoughts like "oh .... poor you.... you are sooo tired. You haven't slept in weeks... months.... years" or "it is so hard to feel so tired all the time." And you know, it is tough!! It is not fun not having any sort of control over how terrible and tired you feel. And it is a challenge for sure to parent other children alongside this or stay positive or even sane. But once I realized how the self-pity was affecting me and dragging me down, I began to make conscious choices to pray against it, to make positive choices, to accept it - even EMBRACE IT - because there is so much learning that can happen when we feel weak, inadequate and altogether low!! It still surfaces from time to time, but now I feel like I can reason with those feelings, accept them for what they are, and note that yes, this level of fatigue isn't easy, but there are lots of things in life that aren't easy. I don't want to waste a single minute feeling sorry for myself!!!

That's a long post, but it's been a long-lasting issue!
Happy to say, though, that it looks like things are improving :P.
Sweet sleep, ya'll!!

Pearls of Wisdom: Helen Keller

Both blind and deaf, Helen Keller spent her childhood locked in a world all her own. It wasn't until teacher Anne Sullivan earnestly worked through these barriers and unlocked the incredible potential that existed within Helen. Their story is an inspiration to many.

Here are a few words that Helen has left with us...
"No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit." - Helen Keller


"Death is no more than passing from one room into another. But there's a difference for me, you know. Because in that other room I shall be able to see." - Helen Keller

"The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus--the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man." - Helen Keller

"I have often been asked, Do not people bore you? I do not understand quite what that means. I suppose the calls of the stupid and curious, especially of newspaper reporters, are always inopportune. I also dislike people who try to talk down to my understanding. They are like people who when walking with you try to shorten their steps to suit yours; the hypocrisy in both cases is equally exasperating." - Helen Keller


And one of my favorites...
"Science may have found a cure for most evils; but it has found no remedy for the worst of them all -- the apathy of human beings." - Helen Keller

Emotions

Feelings.... nothing more than ... feelings.... crooned Morris Albert back in the seventies.

This past month marked our fourth year on this journey that started off much differently than we had anticipated. And as we celebrated, I reflected on all those emotions that overwhelmed me during that first season....

Fear
From the moment there was the suspicion that something might be different, fear lodged itself deep deep within and surfaced repeatedly on a daily basis. What if.... how am I going to handle the extra responsibility.... what type of impact will medical issues have on our family.... what if I'm caught in a situation and I don't know what to do.... Questions circled around and around and around, often spinning wildly out of control. I overanalyzed every doctor visit. I dreaded appointments, but lived for each one, hoping for positive information. I found it hard to leave the kids (we had two girls at the time) even for a little while. If I did leave, and found myself running late, I had to remind myself not to panic, that 10, or even 15 minutes wouldn't make a big difference. In short, I had to learn how to be a parent all over again. Those first two years, really, were about recovering confidence that had been shattered, about facing stuff you never thought you'd have to, and finding that not only is it doable, but can be very rewarding too. Fear still comes knocking, every so often. And sometimes I even entertain it for a while. But then I remember how far we've come. And how far we'll go. And I take a deep breath and do it one day at a time.

Frustration
We have some wonderful therapists as part of our life. Primarily we have occupational, physical and speech therapy. Consequently, though, there has been tremendous focus on development, emphasizing learning and growth, and often with a nagging sense that someone was watching over my shoulder. I remember, way back at the beginning, when I was trying to figure out how all of this was going to fit into our days. It seemed so overwhelming at the time. Trying to encourage developmental play was so frustrating for both of us!!! It took me a while to realize that there is a BIG DIFFERENCE between forcing and facilitating learning. In my anxiety, I tended to the former, trying to keep things as "close to normal" as possible. Now, four years into this experience, I still get frustrated when I realize that my expectations are out of line with what is reasonable at this point. It is a learning process, for both of us.

Fatigue
An issue that we have dealt with, and it continues to be a struggle, is fatigue. It is well known that children with development issues often have problems sleeping well at night. Our little sweetie is no exception to that rule!! While the details of that are another post for a different day, it is suffice to say that learning how to absorb all of this, with very little sleep, is a challenge.

Grief
How does a parent come to terms that their child may never say their name? May never utter "I love you"? May never run like the other kids do or play one step behind because these precious little ones just don't understand the social rules? The severity of our situation is not nearly as challenging as was first predicted, for which we are thankful, but every so often we get glimpses into this ache of the heart. When our little one lags behind, or the words just won't come or there is simply something we just cannot understand. Instead of trying to absorb the whole picture (which we never know anyway!), I move through one day at a time, giving space and dignity to each sadness that comes along, and ensuring we celebrate the victories.


Love and a deep sense of joy
Our little one was only weeks old. I sat on our bed, holding her, thanking God for each special, intricate part of her being. It was not easy, this moment of acceptance. But it was beautiful and freeing. Whatever life held in store for us, we were going to do it together. I had the honor of being her mother, of participating in her life story, of witnessing a million miracles unfold that I would otherwise take for granted.

Oh, the emotions ran deep and strong, and in many ways still do.

What did you experience as awareness dawned and the unforeseen became a reality?

Better, Together

Our little girl was only about 10 days old on that first trip to the pediatricians office.

As we sat in the waiting room, having no clue of the coming storm, a couple of fellas sat in the waiting room with their guitars. They sang and strummed; we listened. As a mother, I soaked it all in - every feeling of anxiety, every move my little daughter made, every interaction with our 18-month old, conversation with my husband; everything around us seemed to stand out and make an impression on my memory.

It took a long long while for me to discover what song these guys sang, but eventually the connection was made: Jack Johnson, Better Together

There is no combination of words I could put on the back of a postcard
No song that I could sing, but I can try for your heart
Our dreams, and they are made out of real things
Like a, shoebox of photographs
With sepiatone loving
Love is the answer,
At least for most of the questions in my heart
Like why are we here? And where do we go?
And how come it's so hard?
It's not always easy and
Sometimes life can be deceiving
I'll tell you one thing, it's always better when we're together

Mmm, it's always better when we're together
Yeah, we'll look at the stars when we're together
Well, it's always better when we're together
Yeah, it's always better when we're together

And all of these moments
Just might find their way into my dreams tonight
But I know that they'll be gone
When the morning light sings
And brings new things
For tomorrow night you see
That they'll be gone too
Too many things I have to do
But if all of these dreams might find their way
Into my day to day scene
I'd be under the impression
I was somewhere in between
With only two
Just me and you
Not so many things we got to do
Or places we got to be
We'll sit beneath the mango tree now

It's always better when we're together
Mmm, we're somewhere in between together
Well, it's always better when we're together
Yeah, it's always better when we're together

Mmm, mmm, mmm

I believe in memories
They look so, so pretty when I sleep
Hey now, and when I wake up,
You look so pretty sleeping next to me
But there is not enough time,
And there is no, no song I could sing
And there is no, combination of words I could say
But I will still tell you one thing
We're better together

----

The days have grown into weeks which have now become years; and this past week it has been four years.
And it has not always been easy.
But it has always always always been worth it.
We're definitely Better Together.

First steps

I'll never forget the moment where the reality of diagnosis began to sink in. Through the fog of disbelief a thousand questions began clamoring for attention. Among the few that rose to the surface:

What does all this mean?
What does the future look like?
Will we be able to handle all this?
Where do we go from here?


Through the weeks and months that followed, I wrestled with these questions and fear of what the future would be like. My highly creative and active imagination provided much fuel for the fire and it was not an easy time. Through this, however, a phrase began to take hold and grounded me in the moment:

While a diagnosis provides a framework for dealing with a particular set of circumstances, it does not define who we are or what we are capable of.


It is helpful to have a framework in order to understand, and effectively manage, the things that life brings our way.
It is not helpful to be limited by a definition or a label.

This brought a tremendous sense of freedom as we began to seek out a balance in our circumstances. Each of us has potential, and it is a joy to share in each other's journey. Milestones became celebrations rather than looming goals to attain. Laughter returned, a healthier perspective set in. The diagnosis became a tool rather than the rule. It was a big step toward acceptance and an abundant life.