This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Tuesday, October 29, 2013

What I want my children to know

Those of you that know me very well know that for the past 15 months, I have been taking care of my Grandmother during the day while my Mother is at work.  She is 91 yrs old and has end stage Parkinson's and Dementia/Alzheimer's.  Her health has declined significantly over the last year but we have seen a rapid increase in her declining health over the last 2-3 months.  I am struggling very much with her overall ailment and extreme physical, mental, and emotional pain and torment she has been in lately. In walking the journey we have with Lydon, Jonathan and I have had very real conversations about death and dying and what our wishes would be for ourselves as individuals and for any of our children should we ever be faced with that scenario. But seeing my Grandmother like this... Seeing my Mother struggle with her own physical and emotional pain in making decisions for my Grandmothers care has been so very difficult for me.  This has made me do some serious inflection and soul searching.  So this post today is mostly to my three beautiful babies but the rest of you who are interested can read along. It may not make a lot of sense to any of you but I hope someday it will to my children...

Hollie, Aidan and Lydon,

Momma wants to share with you some things that I hope you will hold dear and never forget.  I get really busy sometimes and often feel like I forget to tell you or teach you some very important things.  So if by chance you ever get the opportunity to read this, here is what I would like you to know. 
     First and foremost, please know that I love each of you so dearly and there is nothing that could ever replace or change that....Nothing!  I hope that you always know that you can come and talk to me and that even if you've made a mistake and  I don't agree with what you are doing or have done, that I will "be there" for you and do my best to support you in whatever way I can. And in speaking of careful not to judge others for what they have done.  Even if their mistake seems like something stupid or ignorant to you, remember that not everyone has walked the same path or had the same experiences you have.  Remember to be compassionate of other peoples situations and to be thankful for your own but never let that hold you back from working hard to do better.  When you do achieve "better" be careful not to think that makes you "better" than anyone else and that you are not above making a mistake. Remember that everyone has a story and that you can learn something from almost anybody you meet. The garbage man, the janitor at school, the Principal, the President....People are people. Regardless of race, age, education or achievement.  Some of life's greatest lessons cannot be taught...,.they are learned. Learned, from people just like you and me. So don't ever be afraid to share with somebody else something you have learned. When pursuing higher education, whatever route you decide, just please do something that you enjoy doing. Do something that makes you feel appreciated and something that at the end of the day makes you proud of who you are and what you've done. And know that if you do not feel appreciated or proud of what you are doing then you probably should look at other options.   Always be respectful... Hold on to tradition and those things from your past that are precious to you and have made you who you are but never be afraid to try something new.  Change is constant and it is the only thing that is guaranteed!  Stand up for what you believe in and stand strong. Sometimes you may be the only one standing but that may just mean that you are the leader of the pack. So stand strong and hold your head high!!  Stay close to your siblings...Family is forever!
     Hollie if you do indeed become the NICU nurse that you say you will (and I have no doubt that you can) don't be afraid to touch that new Mommys shoulder and reassure her that she can do this. Remind her that God picked her for this special baby. You smile and tell her and show her a thousand times that she can run this machine or that. Be careful not to get too confident and remember its ok to cry and remain sensitive to the reality of life and death.
     Aidan, my boy... Never never never lose your fun loving personality.  Remember that people are drawn to personalities such as yours and that comes with a big responsibility.  If your gonna be a leader, be a good one and lead people in the right direction. Show people that you can friends with anybody and that winning isn't everything.  Show them that its just as important to be a team player and sometimes you should let your most novice player be the star of your team. Aidan, pay attention and watch your Daddy for he can and will teach you how to be the husband that you should be someday... The kind that loves his wife with his whole heart,  puts her first and fiercely protects her. The kind that doesn't define his marriage by the traditional man or woman's roles but views it as a partnership and does what it takes to get it all done.
     Lydon, my angel baby... I want you to know that no matter how tired or weak you may feel somedays, you are so incredibly strong! I want you to know that I would take away every ache, pain, poke and prod that you've endured.  I hope that you never question the decisions that Daddy and I have made for you but if you do, please know that we have done our best with the knowledge that we've had.  Know that your adorable smile and zest for life exudes love and energy to all of those around you.  Never underestimate the power of that, Super Boy!  I know that there is probably tons that I can still teach you but truth be told, you've taught me more than you'll ever know. 
     Most importantly, my sweethearts, please find a time and a place that you dig your heels in deep and develop your own relationship with God. Something that is sacred and truly your own.... aside from us your parents.  I cant promise you a whole lot but I promise that there will be a time in your life when your friends and possibly even your family will disappoint you but your Faith will carry your through. 
     Finally, please know how much I appreciate each of you and these incredible life lessons that I have learned from raising you. I want for you to know and learn all of these things that I've written about but the irony is that it was you who taught me how to love unconditionally, how to squash my inclination to judge, how to listen and how to teach, and how to stand up for what I believe in. I know that you will do many many things in your lifetime that will make me so proud, but don't forget to pass these things along to your own children.

Love Always,


Monday, October 21, 2013

Happy Fall Ya'll

     Once again, it seems like it's been forever since I updated.  I keep thinking that after this event or the next that things will calm down this year but so far we've completed nearly 75% of this year and it hasnt happened yet! Needless to say, its but an extremely busy year!!  So much going on in the Paxton household.  We had an incredible summer.  Lots of fun and resting. Both of the big kids got to go enjoy several different things with their cousins. Lydon was able to go swim a couple of different times with the younger cousins too. He enjoyed a fun filled beach day at Moody Gardens with his "girlfriend".
     August rolled around and we got the big kids off to yet another school year.  Aidan is in second grade.  He has an "more seasoned" teacher this year who isnt as appreciative of Aidans full spirited personality but I am so proud of how well he has adjusted.  He is learning how to adapt to different personality types... A lifelong lesson that could benefit some adults I know. ;)  Hollie is a junior!  Oh my sweet girl...she has a load to carry this year.  She is working on the dual credit/dual degree program and it is TOUGH!!  So tough in fact that we can't seem to find time to pull her away long enough to get her drive time hours completed! Somehow, someway, she figures out how to get it all done and passes with flying colors.  She says she is going AWAY to college  (Sniff sniff! Guess shes had enough of these little boys at home.) and plans to become a NICU nurse. We will all miss her deeply but are so proud of her.  I guess this will take precedent for now but somehow we gotta get this girl driving ASAP!!
     In September, Lydon started a part-time Pre-K program.  We are so happy for this program and the people in charge who were willing to take a chance and let our beautiful boy particpate and be a part of something that he needed so desperately.  This program is two days a week for three hours in the afternoon.  Lydon has done amazingly well. He really likes his teacher.  He has made new friendships, learned to share and take turns, and raise his hand and ask a ton of questions!  He is doing almost as well physically as he has mentally and emotionally. Hes had some cold symptoms but only missed one day because of being too tired.   He is able to make it through the biggest part of his class without using his oxygen.  He usually gets tired about half-way through and/or about the time they start singing and dancing.  He crashes pretty early on school days and is pretty low key with energy and eating the next day as well.  We are not sure where this leaves us as far  as a Kindergarten schedule next year but we will just take it one day at a time.

     After months of fighting through all the red tape, we were finally able to get all of the supplements/medications that his mito doc had prescribed approved by our insurance. We were very optimistic about the potential increased energy and positive side effects from the new combination of meds.  BUT..., let us not forget this is Lydon Paxton we are talking about and our mystery boy is never dull and boring! After everything we went through to get this for him, we started it and sure enough it did seem like it was helping.  He was running around, eating and playing and seemed great until he fell asleep that night.  We gave it about a week but it become more than obviously clear that the new combination was acting like a diuretic and were it not for the Pedialyte he receives overnight for fluid balance, the medication would have been dehydrating him. So, we had to stop that but we were able to separate them out and keep the most beneficial ones on board without any negative side effects.  Wish he would've informed me that he preferred it that way before I fought tooth and nail with our insurance.  Guess he wants to keep me on my toes and keep my brain sharp!  I wouldnt have it any other way my sweet boy....You are worth it all!

P.S.  Through an awesome organization called I Run 4,,  Lydon has been matched with a runner who now dedicates all of her runs to him. We are so excited about this. Its exciting to know that Lydon is the inspiration for somebody to run hard and stay strong and raise awareness about Mitochondrial disease. So cool to see my baby's name on running shoes, especially when he isn't having the best day. He has the heart of a champion for sure and now he is inspiring somebody else's heart and "sole". ;)