Tuesday, May 25, 2010

Some days


There is something so special about rocking a child. Wrapping you arms around that warm miniature body...patting their behind with one hand and running your fingers through their hair with the other as your hearts beat against one another. Your calves get a mini-workout as you use tip toes to push off the ground in a rhythmic rock back and forth, back and forth, as you try so desperately to lull the child to sleep. There is something so special about this time...about the closeness you experience for those few minutes. There's something precious about the stillness and contentment that happens as your child's eyes flutter into the initial stages of sweet slumber.Rocking my children is usually one of my favorite pastimes, but lately my heart has become heavy each time this scenario plays out with Nathan. Hoping that it is a transient issue like so many other things with this disease, Nate has been having an increase in his level of fatigue lately. He can still run around and play like a normal kiddo, but his little body seems to get exhausted quicker and stay that way longer than his usual norm. This level of exhaustion is hard to see. My heart literally hurts each time he comes to me saying "I tired, Mama. I so tired." To hear a 2 year old speak that phrase over and over most days is tough, as toddlers are typically known for their boundless energy, and I have personally never heard a 2 year old express their exhaustion in words. For most parents, the solution is simple. Your child is tired; make them sleep. Oh, how I wish just mundane sleep would prevent my son from coming up to me with those droopy puppy dog eyes and muttering the pitiful phrase of "I so tired". But even with adding an extra 2 hour nap in addition to his normal nap each day in hopes of helping him "catch up" on whatever energy he is lacking, it seems to all fall into a deep dark hole these days. Sure, he has good bursts of energy from time to time, but mostly, he is just...so...tired. And it hurts to see him that way.We try to make life as normal as possible for Nathan and the girls. Our days are filled with school drop-offs and pick-ups, grocery store outings, cartoons, books, and play dates. Naps for the little guy fill a majority of our day, but we still do get out and enjoy the day. Is it too much for him? Is it the heat? These are questions that I ask myself every day. If he has such difficulty handling everyday life here right now, how will he do during our summer jaunt of the beach and pool and this and that and the other? We seem to constantly be struggling with how much we want to do as a family and how much Nathan can handle...but we never know how much is too much until he crashes. Will we ever find that right balance?
Some days are just difficult. Some days I wish all of this would just vanish and I wouldn't have to wonder over and over why my son has sunken eyes today and the desire to sleep or just sit around for a good portion of the day and be completely ornery the other part of the day. Some days I want normal. Some days I want my heart to stop hurting; my mind to stop going to dark scenarios; my brain to stop going through the medical checklist it has memorized in this journey. Some days I want to go back 10 years when my major concern was whether the new shorts I bought showed too much of my larger than average thighs. Some days are just difficult.

Good thing that some days only last 24 hours.

10 comments:

Texas Mom on May 26, 2010 at 12:08 AM said...

Wow... amazing. My heart breaks for you and Nathan. I read these words and just can't imagine hearing a 2 year old say they are tired multiple times a day. My daughter is 2 also.

I appreciate you opening up and letting us in. As I got to the end of your post and read the last line (Good thing that some days only last 24 hours)... I said yep, that's the Amber I know.... always seeing the positive. You are such an incredible mom... and person. Thanks again for such a GREAT blog!

It CRACKS me up that I think I "know" you so well... and I only follow your blog! Ha!

wandaconner on May 26, 2010 at 5:20 AM said...

Love you!

Heidi on May 26, 2010 at 5:42 AM said...

sniff, sniff...this post caught me on a low day. Jack slept most of the day away (see my post) no energy, limp and flushed. Those days are always tough for me. Forcing me to think about the future, which I try very hard to avoid these days. Sadly, this disease does that to us. I would love normal.

The photos are beautiful of Nathan, he has one special ma-ma :) hugs, hugs, hugs, hoping tomorrow is a better day for both of our boys-
Heidi & Jack.

Anonymous said...

I weep for you and for little Nathan. I know it's hard to hear a little one that young say he's so tired. May our gracious Lord continue to have mercy on you and your family during these difficult times. May He give you the strength you need each hour of the day.
My fervent prayers are with you all.
Love you, Aunt Ger

Tara on May 26, 2010 at 11:13 AM said...

Girl, you made me cry. Beautiful post with Beautiful pictures. All I can say is I Love You and I can not even imagine the hurt and pain you feel on a daily basis! You are in my prayers and thoughts daily. Nathan is a truly special little boy, who has a truly special Mommy!

Jill on May 26, 2010 at 11:15 AM said...

Love you guys. Praying a little extra today...

Dawn on May 26, 2010 at 4:51 PM said...

Just read your blog and I so feel for you. My daughter cannot tell us when she is tired. We have to just watch her, especially on these hot days. She is not a great drinker of fluids ( a symptom of Prader Willi), so we have to be vigilante and make her drink.
I understand how you feel, but we have a great God that helps us through all of our situations of life. I am starting a blog sutphinfamily.blogspot.com for family and friends to keep updates on Sara best I can. I have never had a blog before but I thought it would be a good outlet for me.

Nicole on May 26, 2010 at 10:25 PM said...

Oh Amber, my heart aches for you because I can't imagine what it's like hearing those words from a 2 year old either!! Unfortunately I can completely relate with these feelings & I hope it's at least some comfort knowing someone else is carrying the same burden with you.

Anonymous said...

Wow...We don't even realize how blessed we are with our "normal" hectic days...I hope I never complain again...
God Bless!
Nina

dawson20 on May 31, 2010 at 3:13 PM said...

I HATE the tiredness. Brandon's most used sign at 2-3 years old was 'sleep'... he would park himself in his high chair, and happily sit there for HOURS... at 2... when he was supposed to be tearing up the house and making us all feel old... he would choose to sit in his high chair and snuggle his bear.
Some days he would demand we rub his calves.. other days he would demand to watch a movie... most of the time he dozed off (in spite of the fact that most days he was only awake for a total of 6-8 hours between naps)...
It's heartwrenching to see them struggle so much.

For whatever reason, 2-3 years old was the WORST for Brandon fatiguewise... he really did pull out of it around 3 years old... he still sleeps 12-14 hours a night, and still insists on laying down for a movie in the afternoon, and still falls asleep by 630 or 7 most nights... but he's not constantly complaining and signing 'sleep' anymore...

I hope it also gets better for Nate...

I convinced myself that the reason it was so much worse at that age was the amount of growth and brain development, and how much it robbed his limited energy stores.

I dont know if thats true, but it made my heart feel better.

Hoping he gets all the rest he needs, and still squeezes in being a 2 year old.

Hugs momma. It's not easy.

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