Sunday, November 10, 2013

I Want...

to feel normal… Sometimes I just do. NO I don't have any regrets about Mylah or any decision I've made regarding her life and/or care, it's just hard.

Some people will never get it, and I actually know that no one knows how I feel daily unless you've walked this same path.

When I started on this journey I wasn't sure how much our life would change. I knew that it would be a dramatic change from what we were used to, but there's nothing to prepare you for THIS…

I'll explain… A fellow Trisomy mom, Lori whose son Kingston has a Trisomy 13 recently posted this to her Facebook page.  I knew exactly what she meant and how she felt.
 Here are some excerpts from that post…she gave me permission to post this. Thank you Lori!


Lately, I have started to feel myself becoming resentful of my life...resentful that I have to be home by 4pm every day and can't leave with the boys to go anywhere after that. Not being able to go to church or dinner at friends or family's houses...just normal every day things. I feel like a 15 1/2 yr old who is so close to their drivers license but just can't drive yet...I feel "grounded" every day and if I need something for dinner I better make sure I have it before my nurse leaves or I will have to make a meal plan change. The list can go on and on...but basically I have been overwhelmed with feeling like my life that I use to live has been robbed from me...my freedom had been taken away and I just couldn't swallow it anymore.

Well, yesterday I hit my breaking point...or dare we say my awakening? I DECIDED TO START LIVING LIFE!!!

Now I will be honest and say that if you find yourself in my position I am in no way saying "my way" is the answer. People have tried to tell me for years to just drive with Kingstonor to just get him out and he would be fine...that THAT is what they have to do. The last thing anyone in this position wants to hear is that the way they are doing things is wrong. No one could tell me what to do. I had to come to this epiphany on MY own...it's like a journey of self discovery. However, now that I am here, I am finally at such peace after nearly 3yrs of "torture" and "solitary confinement", that I had to share my experience - hoping it will help someone reading this.

On Monday, Zachary fought to hold back the tears as he said, "Mom, you never go outside with us...can we just go to the park?" It broke my heart and his words plagued my mind constantly into the next day...I just couldn't shake his words echoing over and over through my head. I knew the way we had been "living" had been robbing me and the boys of life but I don't think I realized how deeply to the core it had rocked the kids. This was my "aha moment".

Yesterday, after we pulled in the driveway I told the boys, "How would you like to go to the park today?" They both were elated but confused because they knew our Nurse was leaving and also knew Kingston was at home. As I continued to unfold our "new plan" on living life again, expressions of "pure relief" and indescribable joy came over their faces. It was all the confirmation I needed that this new path on our journey was right for all of us.

I loaded all three of my boys up, all by myself (which takes a while with all of Kingston's gear) and headed off to our local park! We had the time of our life and stayed for over TWO HOURS!! We stayed long enough that their Dad was even able to join us at the park for some play time on his way home after work! Kingston had his first ride down a slide and me and my boys all got to experience it together!! Best of all, I captured it on video so we can watch it forever! It's funny because as I unhooked Kingston from all of his equipment to carry him all the way up to the tall twisty slide, I noticed all the parents around us staring like "what on earth is she doing?" "Is she crazy?" Lol...All while Kingston is laughing hysterically in delight!! I mean who can blame him? What 3 yr old doesn't want to take a trip down the slide? As I sat down with k to prepare for his first trip down, I took one more quick glance out at the people in the park to soak in the moment - all of them staring at the 4 of us waiting to see what would happen I guess?! What they witnessed was more powerful than they could ever imagine. Little did they know the prison we had been living in for nearly THREE years!! I can only hope that the loud squeals of excitement made some kind of impression on them!

On your journey in life you may get a lot of stares or people looking at you in disapproval but regardless of how they react, YOU have to choose what is best for YOU and YOUR FAMILY and do what you feel like God is speaking to your heart. It may not be easy in the flesh but if it's what you are suppose to do, God will not only help you do it but you will feel better than ever!

Long sorry short, I made the decision yesterday to re-claim my life and live the life as a Mother of three that I had always longed for...It was just our season...it was time. I don't regret the way we have chosen to do things up until now, but rather I am glad that once I felt like we needed to take a new road on this journey, I took it and didn't look back!! I didn't doubt myself or second guess it, I just jumped back into life and man, does it feel good!!! Wow!! My entire thought process has changed!! No more feeling grounded!! Now it doesn't mean I'm going to be stupid and risk Kingston's health in in-climate weather or expose him to knowingly sick people HOWEVER, I came to the realization that what I thought was helping Kingston stay alive was actually slowly "killing" all of us...even him. The joy I saw on my boy's faces yesterday cannot even be put into words. I feel liberated...I feel set free...I feel like I got cut loose early from a death sentence...I feel like I just got my life back and gave my kids a second chance at their childhood! Sigh...I had truly forgotten how good it felt to be free...I had forgotten what the fall evening air smelt like...all the little things you take for granted until you don't have them anymore. I had forgotten what it felt like to live. Most importantly though, I forgot how good it felt to be ME: a Mom of THREE!!"


As I read her post I wanted to cry because I knew the feeling she spoke about. I felt like she read my mind. I know there are a number of Trisomy mothers & mothers of special needs children who feel the same way. I didn't generalize the thought to all mothers because honestly, mothers of a healthy child don't go through the motions we Trisomy mothers go through so there is no comparison in my opinion. Not to dismiss any other mothers, it's just we have have to think and worry about things other mothers don't have to. Like oxygen saturations, breathing patterns, weight gain, medications, physician appts., numerous surgeries etc. 

Some days I just want to have a conversation that doesn't center around Trisomy 18. I just want to go somewhere with my daughter by myself and not need the "other mandatory adult" the hospital advised I must travel with at all times.  Don't get me wrong, I am HIGHLY thankful for Mylahs current condition. She is doing great, so well that we have gone a few places without her ventilator. It feels good to just grab one less piece of equipment, but I still desire to take my daughter out by myself, grab a bite to eat or go shopping like I see so many other mother's do. 

I got my first taste of feeling normal again on my birthday when Mylah slept with me for the first time since being home from her heart surgery last year. It was a great feeling! That is the feeling I desire. 

Once Mylah started tolerating sleeping off the vent, I had made up in my mind that she and I would go somewhere. I wasn't sure where that place would be, but I would pack up my baby in the car & I wouldn't feel guilty about it. I had butterflies for sure and then I saw the Facebook post that reassured me that I would be ok. It validated my feelings and it felt so good to know that I wasn't alone in struggling with wanting to feel normal again.