My story continued

Now we start with speech therapy and after no progress I ask for a new therapist. When we get his new speech therapist she tells me he needs speech 5xs a week(which they would never approve) and be evaluated for other “issues”. So now we have speech 4xs a week( because I have a BIG mouth)  occupational therapy,  a family trainer for me and another therapist to help in the classroom. As time goes by it was getting harder to have the patients level needed. In the womb my son was always active and in life he followed suit! He never stops. I love his spirit though and didnt want to loose that. As other mom’s that traveled my same journey , this sounds all too familiar. 
Months go by and he is still on the nebulizer(pulmicort and albuterol, or as I call is satan’s drug) but slowly coming off all of all the other medications. Still struggling with his speech and behavior. Cringing anytime he got sick or allergies hightened knowing the weezing and sleepless coughing nights were coming! Now many more months have gone by and I see marked improvement in all areas and best of all NO more meds!! Unfortunetely still use the nebulizer but just for instant relief.
Now I am not going to bash medical doctors because I think the drs that care do the best they can.  They have learned and are trained to use drugs to help people. Again not all are quick to perscribe but in the end ,that is their tool for treatment.  Now I start to look further into things. Noah’s(my son) new occupational therapist says to me after a few months “he really was all over the place today and we really couldnt get much done.” So I start to think. Why was she saying this? Those are the words I heard daily from his last year teachers but never in the new year classroom or with the new OT(occupational therapist). I was told he needed consistancy, predictability and strong structure(they tell the “warden” as my hubby calls me). He constantly needed re direction. What changed now? Did he regress?? His services were decreased was he going backwards? Then a light bulb goes off. Noah was sick the week before and I had to give him albuterol(satan’s drug). Hmmmmm. At home he wasnt the same kid and now his OT says the same things as last year. COULD it be the reaction to the meds??? Did this alter his personality so much that he was unable to function as expected? Now I start to think, maybe the wacky behavior wasnt a “defect” but a reaction to all the meds my son lived on for over a year? I call the dr and she says after a half hour it is out of their system and it has nothing to do with that. So why is my child cockoo for a week? Any parent you speak to will tell you the same. So upon a suggestion from another mom I ask about saline and xopanex. She gives it to me and I start using the saline at first sign of congestion in hopes it will break it up. As always it escalates no matter what naturl paths I take and now he cant stop coughing or breath. This is the ONE time I say give me the meds because it can become life or death. Reluctantly I give him the new broncial dialator and 5 minutes later he is talking a million miles a minute while riding his bike through the living room. BUT thankfully that 30 min thing did hold true with this new medication. This is how I became even more “crazy
“.

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2/2/15

2/2/15.
Today marks 6 months of a life I am living I don’t know.
Amazing how the shock and experience of it all is always so clear.
So many people besides myself affected by this tragic loss.
Everyone deals with things differently. Some pretend it never happened. Others look the other way. Others can’t push past it. Others are angry. The list goes on.
I have heard so many people say, ” I just don’t know what to say or do”. So they do nothing. They say nothing and offer nothing in return. They ask ” how are you doing?”, no really ” how are you doing?”
I learned that no one “really” wants the answer. How am I doing? I am doing!! I have no choice but to do. I have a little boy who lost his father so loosing his mother isn’t an option. As a mother I can’t fix this. I can’t take away his pain. I fight with all I have in me and pull from everything, to find the strength to keep it all going.
I have a sick mother and a heart broken son,mother/father/brother in laws to name a few.
Truth is after the first few days everyone gives what they have and go back to their own lives. Leaving the people who are suffering alone to fight their battles.
So don’t judge others as you know not what struggles they have. Sometimes tequila at noon, sometimes a Xanax at 6am. Sometimes a night out, sometimes a night in. Sometimes with a friend, sometimes alone.

I have learned so much from all of this. I try to always draw from the positive as we all need something to hold on to. Live your life guilt free and be true to yourself and to others. Always say what you feel and mean what you say. I have the beauty inside of me that lived in my hero of a husband. That is where I draw from. A pure unconditional love most don’t find in a lifetime. My beautiful son who represents that love.
I continue to ask for the strength to heal his soul and give him the love of two.
I am grateful for whomever shows me kindness , love , support and most of all sincerity. I am grateful when I am able to feel my heart beating and there is joy somewhere in there. I cling to the knowledge of knowing something great is always around the corner. I now have an angel to guide me through.
I am here to tell you without a doubt that dying from a broken heart isn’t possible. Living with a broken heart is. I personally don’t think any amount of time will ever mend it. You just put it behind you and move forward however you see fit with whatever makes your heart pound. That’s how you know you are alive!!

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