Saturday, January 5, 2013

Your Love is Like a Roller Coaster, Baby

Other than my uber ridiculous Facebook page rants, where I'm letting off steam about my struggles in raising my angels, I really do try to look at the brighter side of things. I really do believe in the silver lining in all things. Usually, after I post something about what is annoying me (or making me act like a psycho) at the moment, that is usually the moment I put on my big girl panties (emphasis on the big) and choose to get over it. I have a quick rebound. I'm hot then I'm cold.
Some would call it bi-polar, but whatever.

With that being said, this week has been more trying as a mother than any week... Possibly, ever. Maybe it's that Lake has been out of school for 2 weeks and at least half, or more, of that was spent indoors because it was raining or just too cold to take sister bear out... We can't afford for Lennon to get sick. I didn't want to take the littles to playgrounds because the flu Is running rampant in town, and everywhere, it seems.

After several ...and I do mean *several* days of sister bear fighting naps... or waking up at 4, 5, 5:20am wanting to play or eat... I just didn't have the "oomph" in me to be Super Woman any more.

Then, there was yesterday...
All the way up to 11:50pm the Tasmanian Toddler spun around wreaking havoc. I cried twice.

Once, I cried on the couch because she just would not nap... She kept getting up (more than 10 times) and playing... But she was so sleepy because she had been up since 4:30am... she was rubbing her eyes, and she was *very* whiney. A momma knows when her baby needs sleep... And though, I did not give in to her demands of "no nap", I did revert back to rocking her to sleep (which took FOR-FREAKING-EVER to get away from). A momma's gotta do what a momma's gotta do.

The second cry came close to midnight. You see, I felt bad that it had rained a lot, or that Lake hasn't had a "fun enough" Christmas break... I worry about dumb stuff like that. So, Charlie and I planned a quick overnight getaway to Shreveport. We took Lake & Lennon to the Space Center. They have the Sci-port exhibits and are currently hosting the Titanic exhibit. If you know Lake at all, you know his love & interest for all things Titanic. He gets it honest, I love it too. He was soooo excited. He loves science, he loves space, he loves the Titanic ... This was the perfect place for him. Win - win.

What wasn't perfect was Lennon staying in a hotel... A strange place. I sometimes get confused on what is "because of her Down Syndrome" and what is "personality related". Like, for instance, when we got there, she was all keyed up, as if the 2 double beds were a jungle gym. It took a long hour to get her calmed down to go to bed, and once we were in bed (she slept with me, Lake slept with C) it took another
hour to go to sleep. Once she was asleep, I finally fell asleep. Then, an hour and a half later, she woke up, didn't know what where she was, got freaked out & started screaming / crying. This went on for at least another hour - seemed like an eternity. I was exhausted to the point of tears again. I literally laid in the dark beside her and let my tears soak my pillow... exhausted, confused, and frankly scared.

I get so frustrated with her stubborn streak or how she gets so crazy when we go out of town... It's EVERY time we travel. Why can't she just enjoy it? The car ride has gotten better... We've learned to stop frequently - for long periods of time. However, over night stays are down right miserable. Will this ever change?

It made me sad...
Sad because I have big dreams for she and I... And they involve traveling the globe to meet my friends from afar, those I have met via the "world wide web" & have children like her. Will she ever be a good traveler?

It made me wonder...
I wonder if her ears are hurting? Is her throat hurting? Why is she being so "crazy"? Is this a DS thing or is this just a stubborn 2 year old? Why do children with DS have a label on them for being stubborn? Why can't we just assume it's them simply being a CHILD? I mean, honestly, children are DIFFICULT... And then they become teenagers... With smart know it all mouths.

Then, I thought...
What if she isn't feeling good?... She is almost 3 years old... She **should** be able to tell me what hurts... But she can't, because she can't talk. In the past year, we have celebrated a few words...broken English, yes. But words, nonetheless. Nothing consistent, not even "Mama". I know people look at her and think "oh she is dreamy"... I get it, I do too. I am in love with my children. They are true joys, and beautiful beyond description.... But after 3 years of crying, grunting and half pointing at what she wants... I'm TIRED. I am EXHAUSTED. I want to KNOW what is upsetting her. I want more children... But I know my husband thinks I can't handle anymore and I know we'll never get to a point where he is comfortable enough to want more if we don't make some sense out of what she is saying.

I also know, she is SMART. She understands most everything I say. She follows directions... When she wants to. I know we are blessed. We have a healthy little girl. We have the unique opportunity to raise a child with Down Syndrome. We are lucky enough to be on a journey of looking at life through rose colored glasses.... through her eyes. I do not want to take that for granted. I want to jump and shout and praise God for this special gift.

So, then I start feeling guilty...
I feel guilty for wanting "more" out of her. I feel horrible for not being satisfied. I feel horrible for pushing her to obey and try harder. I question myself, my motives, my actions. It becomes all too overwhelming.

Now... With all that being said, tonight I was thinking about her progress. And that's when it hit me. In the last week, she has said more than "Mama". She has said a few different things, and most excitingly, she has said them CONSISTENTLY. Ok, just typing that made me cry. It's what I pray for constantly ... I pray for it while washing dishes, or over her while she sleeps, or when I take a shower and no one but God can see me and hear my pathetic sobs. CONSISTENTLY.... She has said, in her own broken English:
"What is that?"
"I like it"
"Yeah" (when answering a question)
Not only is she saying things, but *finally* after almost 3 years of signing to her, she is FINALLY understanding that if she wants something she can't say, she can sign it. Twice this week, she came into the kitchen and signed "eat" and followed it up with the sign for "banana". I was so excited I had a banana with her. (Fat girls, we like to eat our emotions.)

Her words... They are hard to understand if you don't know her dialect, or if you don't know the way her fingers don't quite match the sign language perfectly... but it's there... and she is saying it.

God hears me. God is looking at my heart's desires and He is giving them to me, right when I needed them most. He has a way of doing that. He knew, after this week, I would need a "pick me up". He knew I would need a "boost" in my confidence and faith.

I'm so exhausted and tired and overwhelmed from a roller coaster of emotions I could cry myself to sleep - except I won't... Because I am too tired to even put forth the effort... And because I am too thankful for the silver lining I look for in all things.

I almost missed a great deal of "consistent *word* blessings" because of myself... Because I was allowing the stress and annoyance of dealing with a fussy two year old and a six year old boy with cabin fever to blind me of the gifts right in front of me.

I won't do that again.


Angel said...

(((Hugs))) to you!!! I totally hear you. Love our kiddos to pieces, but damn some days are HARD. Sometimes I wish things could be easier, and then I feel guilty for wishing it. *sigh* Hang in there. From a whole 2 more years experience ;) I think life has gotten a smidge easier (more words and understanding) and my Cooper has definitely become more tolerant of new things.

Jenifer Parris said...

Although we are not as far into the journey as you are, that is a fear in the far back of my mind. I remember being so excited to hear each of my little ones' voices. I get sad if I think that hearing that speaking voice might likely be delayed with Neely. So thankful that God chose us to be Neely's parents. And thankful for the IG/Facebook Mommas that I have met along the way. Thanks Taryn for sharing truthfully. I'll rejoice with you as Lennon speaks more and more and will pray for you the next time I see you are traveling. :-) Love, Jenifer

BumbersBumblings said...

You are such a beautiful mama!! A friend told me recently to not let my guilt (like the guilt of "people would die to have what I have") overshadow the difficulties of being a mom. It's okay to have hard days and to just whine about it sometimes. There is always someone that has it worse off than you, but your difficulty is your's at that moment and that's okay!!

Also, wanted to say, we just had a similar experience at a hotel with B, so part of it could just be her age and stubbornness. He was just sooo wound up and excited, that it took us FOREVER to calm him down. We were about to lose our minds.

Love you, friend. Hope someday I can be the friend you meet in your travels.

Andrea "The H family" said...

You know, I always hear that children with DS are so different from each other in their milestones, quirks, etc that it's hard to know what to expect because that's the "pat" answer everyone gives you when you ask "will this ever go away?". However, I think it's safe to say that our momma syndrome have exactly the same diagnosis. We are exactly alike. I feel, think exactly as this blog post is written. The only difference is geographical location. It's almost amazing to read your words that come out of my head. Love you. Now...the facts: You gotta get a sleepsafe BED stat. have too. I'll send link.

Andrea "The H family" said...

Leah peck said...

Happiness. Joy. Thankfulness. Love. I am overwhelmed with emotions FOR you! I learn so much from you and your littles. Thank you for putting it out there! Love you guys!!!