Over the Rainbow

We remember the day we met you for the first time: so small, so fragile, so incredible, so loveable and new. Counting down the days until we could bring you home! The many worries, the planning, reading how to care best for you, what to buy and have ready, how to be a good parent to this little creature that you hoped and dreamed for so long you could think of nothing else. Many trips to the shops to ensure all necessary needs would be met upon arrival. The “nesting” process was in full force.

Then THAT day came!! We brought you home: opening our hearts, our souls, giving all of the best we had and then some. Loving you was easy. Watching you  grow and change: watching for the little changes and developmental progress. Of course, sometimes, not knowing, made further reading or a trip to the doctor. Your health and happiness became the priority above our needs or wants, but this is what you willingly sacrifice for the one’s you love.

The emotional bonding is incredible. You miss them dearly even if you just go away for a few hours, or, heaven forbid, a few days! Your heart aches and longs to be next to you, for cuddle and tease and play and just give love to! Your heart and soul sours heavenward when our eyes would meet and we connected.

Over time, anticipating your needs, wants, your non-verbals were replaced when you spoke your first word! What a day! Such delight and excitement and oh so damn cute!! Every day you were encouraged to become all your could be, socializing, time our at the park, enjoying  birthday treats and parties, the company of friends and family.

The best was always for you our precious princess.  Our time with you will always be remembered as precious.

Over the RAINBOW: We see your smile, your strength, your beauty, and remember that we all lost a piece of our heart and souls the day you went over the rainbow.

Over the rainbow, our little girl

Enjoying life with others

I’ve been living this life for as long as my 25 year old daughter has been 1 yr. That’s a lifetime. I have found that you can’t dwell on the myriad of health issues and complexity of health needs, but rather, need to enjoy what you can. I have found and really enjoy and have a passion for photography. I don’t claim to be a professional, but I think I do alright and have learned a lot about this skill, hobby , and potential business opportunity. I have met a great bunch of people that share the same interests and love to see how others will photography the same thing but each will be different. This hobby lets you see the world differently and interpret it according to you, your day, your mood or more importantly, your inspiration. I have met some people that normally would likely never meet, which is great, because I have been able to see others different from me but see their passions and gifts all the while getting to know about them: a definite plus!

If my energy level is good and the ol’ bone marrow is working, dancing is another activity that I absolutely love!!! The music, the moving, the expression in dance , the mood and various rhythms of the dances takes your body and soul in different states of mind. There is nothing like dancing with a partner and you’re in sync! The ease with which you can move around the dance floor is fantastic. I can’t get enough, even though I may be exhausted, I just want to dance all night!

The grind of CKD and other chronic diseases entails many appointments, many blood tests, testing which becomes really intense when facing possible transplant or starting some form of dialysis. Both the options involves including others: Dr’s , RNs, NPs, RDs, surgeons, anesthetics on the health front, but there is also your family who’s lives are intertwined with yours. You need the input and help of all of these people to continue to enjoy your life, although this will mean changes. Surrounding yourself with positive and up-lifting people is key. You have enough on your plate without having to deal with constant “debbie downers”. Manage this and you will still have good quality of life. Connecting with others gives us so many positives and stimulates ideas, conversations and new points of interest or viewpoints.

No matter what is going on with your health, surround yourself with human contact.Make the best of things and have that Kodak moment as often as you can. After all, life is not measured by the number of breaths we take, but by the moments that take our breath away.