The Warhammer Nerd Gene runs deep in this family. My husband has it; my son has it; I have it… And only a true carrier of the gene could make a Halloween costume this cool out of card board.
Meet Commander Isis, Space Marine. Bow before the Emperor, or prepare to die in a very bloody fashion…
Love has grown and been lost and re-grown. Children have been conceived and loved and cried over. Our selves have been lost, then searched for and then found and recreated. Love has turned to hate and then back to intense love again. Faith has been broken, tears have been thrown, but we will love until we die. Wild horses couldn’t drag me away. You watch me suffer and try to make it better. I don’t mean to be bitter and treat you unkind. We never believed when people told us marriage and life was ‘hard’ – we knew that we were so different from the rest. Now we know what those people know. ”Life is pain princess” as the famous Princess Bride quote goes. One day we will ride those wild horses and they will take us far away from the pain to a place where we can live as children – a simple and lighter place, without the cares of the world hanging like a heavy rain cloud always above; with no serious things to ever think about; with no illness; with no sorrow; where we can run and laugh and play in the sunshine. This weekend has felt like that wonderful place. Thank you husband of mine and thank you for being the most wonderful father and provider for eight years. Thank you for being so kind when my words are not so kind. Thank you for refusing to stop loving me, even during the times when there seems to be so very little to love. Thank you for your patience and willingness to be better and better. Thank you.
How can she be this old already? *tears sting my eyes* I was not expecting to release my daughter into the world of preschool for another year of more – oh how my stomach churns! This special preschool will be like 2 1/2 hours of early intervention four times each week – absolutely fabulous really… It has just come up so unexpectedly for me though! I havn’t had time to prepare myself to put Phoenix and her special needs (Rigid Spine Muscular Dystrophy) into the hands of strangers… even though I have a feeling these strangers will soon become fast-friends… like the bus lovely lady – can you believe little 3 year old Phoenix is going to catch the school bus to and from school! *stomach churning* And Phoenix’s teacher whose last name is also Barfuss and who is absolutely wonderful I do confess… (Yes she a relative – her grandfather-in-law is brothers with Nicks grandfather… it is a small world in this small town) And her occupational therapist who just couldn’t believe how cute she looked on her first day with flower embroidered jeans, an excited smile and a big-girl sparkle in her eyes!
“Bye mummy” she said as she walked in her walker into the classroom. She gave me a sparkly Belle-lipgloss kiss more for me than for her and went off on her new adventure without so much as a glance backwards.
Tears did not well up in her eyes…
*sigh*
She is going to love it….
I get so clucky for another beautiful child in our lives, but my heart breaks at the knowledge that each child we have will most likely have Rigid Spine Muscular Dystrophy. I never knew a heart could break as many times as mine has and still continue to beat. My heart breaks a little on most regular days and a lot on days like last week at the spinal surgeon office at Shriners Hospital. My beautiful, loving children have to work so hard in their little bodies and I feel overwhelming compassion, respect and love for them. It is so hard for them and us in many ways though, physically and emotionally. Do we dare bring another beautiful child into the world with RSMD? With all the love and wonder a new child brings, can my heart handle the inevitable breakage that occurs when a mother sees her child struggle to live?
This is a sad portion of my life and a rather large portion of my life. Who would have guessed, as a young and vibrant single-person that life would have thrown the twists and turns that is has and continues to do… I had absolutely no clue. I just thought about boys and that was about it. Death didn’t bother me back then. I was about as carefree as one can get… I never imagined that I would be a mother, let alone a mother of two beautiful children with Muscular Dystrophy. I never dreamed about a wedding day or holding a baby in my arms – babies freaked me out! They all hated me!! They all squirmed out of my arms and screamed at the sight of me!! I was officially the worst baby sitter ever as a teen! And then suddenly, at 23, I was growing one of my own inside of me…
Life… Oh life…
happiness and joy
xox
Look at these lovely little droplets of love I have been finding all around the house! Arn’t I a lucky little housewife to have such a loving and thoughtful husband! I have been finding them in the most thoughtful places too – like, under my camera, hiding in my beads, under my paint brushes, behind my Arbonne skincare – so when I have gone to do all the things I love, I have found a lovely note as well! So thoughtful. I laughed out loud when I found one in my underwear drawer though – it had been there for a few days which means I definitely need to shower more often!! haha!
Nick and I will be married for eight years this Monday. That is a lot of our lives together. I am so grateful for his kindness to all and brilliance with the children. He has this amazing willingness to love. I am pretty darn lucky, I must confess.
The sun is shining, green grass is sprouting, daffodils are blooming – it is going to be a great day :)
Jasmine xox
