Kaelyn has gotten really good about delivering some funny punchlines unintentionally. Recently, Ryan forgot his cover/hat and we drove on base to drop it off. Kaelyn inquired as to how I knew which car was his because "a lot of cars look similar to Dads". So I explained about how I know the color, the make, and the license plate number along with my old parking sticker from College.
Kaelyn quickly states, "For yours we would just find a car that looks similar and then look inside to see if it was messy. If it's messy than we would know it's yours!"
Just so you all know, my car is pretty clean right now...so I don't know what she is talking about!
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Once again, I must apologize to you all for neglecting the blog. Life has really gotten hectic!! Ryan is currently in training so we have been soaking up the Daddy time while we can, knowing that as soon as training is done life will get even more hectic!!!
Nolen has passed the 6 months since illness mark, and we have accepted that a full recovery is not to be expected buy we still hope for it. I will post more on him later, but his health and GI issues have improved. His blood levels aren't normal, but don't indicate Leukemia/Liver/Kidney failure as of yet. And he is making some great strides in therapy. Which brings me to why life has been so crazy.
--We have our application in for Disability, our Social Worker Stan thinks we have too much money in savings and unless we can get them to look at Nolen separate from us we probably won't qualify. The application process is absurd! It took about a week of nothing but working to post his medical history! I'll send you guys the picture of "The Stack" so you can fully appreciate the amount of work that goes into just the beginnings of the application process!!
--Nolen has been evaluated for Occupational therapy (adding it once a week), Developmental teaching (to help with his cognitive, social, emotional and language delays). He qualified for both and we will be adding these two therapies to our existing two for a total of 4 therapy sessions/week (maybe five because our CHOPS therapist wants to add OT as well).
We are waiting on referrals for a hearing test and developmental pediatrician as well.
--Nolen has these precious braces to wear
My girls (and possibly Nolen, but I won't know until he is much older) have always seemed to have dreams. Both good and bad. So part of our morning routine is to talk about what we dreamt about the night prior. Yesterday morning, Kaelyn shared this gem of a dream with me...
"I had the craziest dream last night mom"
"Really, what did you dream about darling" expecting to hear about the latest princess dream in a LONG line of princess dreams
"I dreamed that Dad, Me and Anna went swimming. And *insert gigle* Dad was wearing a little *hold her hands really close together* girls swim suit. Isn't that silly!"
"That is really silly!"
So, I made her repeat the dream and video taped it so that Ryan could see it when he got home. He didn't find as much humor in the situation as I did! I spent the whole day imagining my husband in something like this...
Audio books are my secret homeschooling weapon! The girls LOVE them, they buy me about 15 mins while also counting as "educational". Matter of fact, this post WOULD NOT be happening if it wasn't for an audio book rented from the library!
I struggle sometimes to balance my want to live in denial with my NEED to keep a positive but realistic outlook. I want to ignore to vehementantly deny the possibility that my son might have delays and special needs for the rest of his life. But, I can tell you one thing that I have learned in the past 6 months...having a special needs child radically changes YOUR life....even if his "specialness" is just possibly temporary. These radical changes permeate more than the big picture aspect of your life. Even the mundane day-to-day living has become completely different.
Almost everything I do with Nolen is calculated, from how I try and pick him up by coaching him from laying on his back onto his side, then to sitting as opposed to just grabbing under the arms and going to how I carry him differently then I carried my girls, trying to keep the pressure on his hips and not under his butt (so that he is encouraged to lengthen his body and not curl up). I try to make every moment and every interaction with him an attempt to instruct him, strengthen him, and encourage him.
I push my son. I push him more than my girls were ever pushed, I stand for hours in the toy aisle analyzing which toys encourage suplination in his forearms. (Any suggestions?) I sing ridiculously loud lullabyes over the sound of the EEG monitor being glued to his scalp and his screams. I spend hours at therapy making crazy sounds and faces and popping his binky in trying to keep him from screaming the entire session. (Again, any suggestions?) And in those session in which he just isn't having it and I would have whisked my girls up in my arm and walked away, I fight the urge and push him through it. Why? Because he needs to be pushed and my emotional need to protect him has to be ignored by HIS needs for therapy.
I live, breathe, eat and sleep his difficulties daily. I watch his progression and jump for joy when a new skill is mastered, but I am constantly aware of the other milestones he should have reached but hasn't. This is why I am so quick to recognize denial in those around me...I know and see his issues on the most intimate levels, I hold him when he has bad nights full of residual pain, I worry when he sleeps for a full day and doesn't show interest in eating, I watch and hear his frustration when his hands don't perform as he needs them too. I simultaneously beam with pride and cringe with realization when he adapts to using his wrists to move things because he can't open his hands. I spend hours on the phone with my sister adjusting his lab levels and demanding further test because 6 months later his liver and other levels SHOULD be normal, but aren't. (Any suggestions on how long post Encephalitis abnormal labs are considered acceptable?)
I get that every parent or loved one of a child requiring different needs wants to ignore them, wants to gloss over them, wants to give their child more time, begs that it's just a time thing and not a real issue to be faced head on. But what good does glossing over do for a child who *might* have real issues? None. Just like becoming overly emotional when my son was in the hospital didn't help him it only exhausted me.
Because I am his mom, I don't struggle with denial because I am faced with this one hard truth---Denial has no value other than to make me feel good.
Denial does not make a problem go away. In fact denying that your child has a problem only makes it a bigger problem because you neglect to push them and seek out assistance and therapies that can make a HUGE difference when you start early.
Denial is not the same thing as being optimistic. Optimism is choosing to hope for the favorable outcome. I hope, pray and believe that Nolen will be well, but I am very realistic about where we are, and less than comfortable with the fact that he might not be "normal". Ryan said it best, "Nolen just wants to be loved, and regardless of what happens, I am more than happy to love him"
So, help me out here (since I did just let you read my diary)...how do you balance Denial with Reality? Worry with Optimism? Do you think you can be Optimistically realistic? Am I in denial about being a Pessimist?
The girls have our old iPhones because I have become *that* parent...the one I swore I would never be! I figure all you "No video games for my kids parents" can talk to me after multiple doctors and physical therapy appointments in one day...and then judge my decison. But be forewarned...this is one of my best parenting concessions to date.
This morning...Kaelyn, in all her sweetness, walked up to me holding her phone, "Mom check this out" and holds up the phone to show me the pictures she took.
I feigned interest, expecting yet another montage of random blurry shots. She could tell and decided to narrate with a very proud grin.
"These are the towels on the floor," she succeded in getting my full attention as I saw the blurry shape of white which could only be the pile of towels waiting to be washed,"and this is a picture of my blanket on the floor, and these are the toys on the floor, and this is a picture of the dishes in the sink. This house is a mess! See all these things"
*she keeps flipping photo after photo*
As I mentally thanked her for the digital "to-do" list, I looked up and said "Well, now you know what needs to be done".
