A letter from your wife on your 59^th birthday-

Almost 15 years ago, when we first came to be- we were held together  by letters, and phone calls, airplanes and partings. My dream for us then, was to spend our future together, side by side, being together each day and night.

You made it happen , you moved across the country, and began your business again  focused and aggressive, You were determined- and most people don’t know how hard you worked and how dedicated you are.

We were married finally, in Santa Barbara, on the old stone courtyard filled with flowering shrubs. “ Look around you”, he said, as we exchanged rings,  promises, our hearts already entangled. “Everything as you see it now, from this day forward, will be different.” And it was. We were. Happier even. Solidly united.

You were 50 when our first daughter was born, yet you were youthful in your joy. The weeks I spent in the hospital before, when you came to visit me early each morning, and came back to kiss me goodnight at the end of each day. And when she was born, you stayed with us, like any new young father, sleeping in the bedside chair the first few nights, changing her diaper, tending to her needs. She was a preemie when we brought her home, and yet you held her without fear, gathering her up in your large hands and holding her to your chest , she was precious to you , your firstborn and you never wanted to put her down.

And when Zoe was born two years later, again with the unexpected , urgent arrival-there wasn’t anything you feared. You were there through all of it- standing with the surgeons, sleeping in the too small chair, tending to her newborn needs, rushing home to scoop Olivia into your arms and assure her that Mommy would be home soon. You told me I was brave, yet other fathers may have stepped back, and not been so close.

You live your life with the best of priorities. Placing your family first and trusting others to do what is right- and even when others disappoint you- you persevere, believing that God is keeping a place for you, understanding why you do what you do. His priorities that you follow, in business and life.

And through our challenges with first Zoe’s diagnosis and then Olivia’s – you have stayed strong. Always present, offering to do more- wanting to do more than either of us can. You celebrate their victories, and move past the  moments of grief. You don’t run from the hard stuff, or even try to escape the difficult times. You remain committed and strong- encouraging me when I most need it.

And each day, we depend on you. Your arrival home , still greatly anticipated. You end your day early to spend time with your family- and the girls watch the clock, eager to greet you with excited smiles and stories of your day. The dogs leap with happinessat your arrival. And I take a breath , finally at peace , knowing that with you by my side, you and me against the world- we can do anything. I am grateful for all of your 59 years, these life experiences that have made you YOU.   Happy 59^th!.

Blog post  www.specialneedsmom.com  Dec.2, 2009

There is a lot about my life that separates me from other moms. Enough that often I feel as different as my special needs child. My husband and I have two children with a rare genetic disease, a disease that is hard to explain-and harder still for  others to understand. It’s called mitochondrial disease and Stephanie Shapiro of Atlanta, a mom with two children severely affected, recently wrote this honest account  for  CNN Health.

I have two beautiful girls, who are in many ways-age appropriate, but in other ways are not. Being their mom, means I have had to learn about generalized epilepsy, renal tubular acidosis, brain abnormalities and strokes, GI issues, anxiety issues, memory and learning issues, acidosis, retinopathies and blindness, even endocrine abnormalities. These are some of the symptoms of mitochondrial disease, the parts of the disease that are easiest to talk about. The every day.

I manage the everyday for my 7 and 9 year olds still, the way that newer mothers take care of their young. What time they awake in the morning, how long they have slept, the time lapse between meals and snacks, their daily energy output how much they have drank- even their bathroom habits- still. I try and determine when Zoe should use her power wheelchair, and when she should be pushed in her wheelchair stroller. I have to weigh the repercussions of letting O, now nine, stay up until 7 to watch a TV special, when I know she had PE today and she usually falls asleep around 6:30. Often I have to cancel an after school activity, a night time event- or   my husband and I must split up- as it is rare that both children can be out after 5 pm at night. I have come to dread declining the social invitations that sometimes are for these late hours at the end of the day, when the girls have run out of energy, and it just won’t work. It is awkward to explain, that we would like to come, but can’t- because whatever hour is appropriate for other kids, just doesn’t work for ours. My husband and I have a limited (non-existent) social life for the same reason.

The future is something I rarely talk about. When others ask me if the disease is progressive, it is like a blow to the stomach- that luckily does not strike too often. I have to focus on the here and now. I pray that our family will continue to thrive and do well. I am thankful that my marriage is not affected by the statistics of divorce that come with the majority of families dealing with chronic illness. Sometimes I am sad for the friends I have lost, the friendships that my lifestyle and the demands of family, I just can’t afford. There are days I am afraid, feel alone and days I am determined, and strong-it has changed who I am, how I manage, what I value, what makes me happy and what makes me cry. It has made me a better mother who does not take life for granted.