The tapestry of the life of a medically complex family

Archive for the ‘Special Needs’ Category

Patrick’s Sunday




Our St. Patrick’s Day adventure- on a bitter cold New England day.







I know how lucky I am

Every day we struggle financially. Each day can be a physical marathon. But everyday I look at my Fearsome 3some and my college-attending teen, I know how lucky I am.

My oldest arrived at a time that may have been “less than ideal”: I was between Grad School Graduation & my first job in a new city- Philadelphia. I signed up to be a control on a “Core Temperature in Depression” study, recruiting non-pregnant females for $75 to swallow a silicone bean & wear a monitor. Imagine my 24-year old surprise! It was a roller-coaster but the answer to my dream of becoming a mother.
My son’s arrival was a flurry of NICU docs, worried nurses & labor-enhancing drugs. He arrived via vacu-assist (appropriate give his surname) and blinked at everyone like: What’s all the fuss? I’m fine. Parenting him was easy & carefree as I look back- but seemed every bit the struggle of every parent as I went through.

When he was 12 years old, my other mothering wish came true: he would have siblings, a brother & a sister, and they would join us in a new home I was able to purchase. His big heart and caring nature were so evident as soon as his brother & sister arrived. When his youngest sister came home, his heart swelled even more. It was amazing to watch & I could not ask for a more clear indication of parenting “success”.

The twins & my youngest may struggle with medical needs, feeding & energy but make up for it in the breadth of their capacity to love, endure & enjoy. They wake each day & immediately check-in with each other. Any separation (like taking my youngest with me to the grocery when a nurse is here with the twins) is predicated with a group hug & concludes with a reunion worthy of a Disney production.
Right now they are sitting at the kitchen table drawing plans for a Leprechaun Trap and sharing their ideas with each other. Yes, there is bickering over who has the box of crayons, which idea is best for the trap, what a Leprechaun will do if they don’t wear green… But most of the interaction is give & take of ideas, punctuated with positive encouragement of “that’s a good idea!”

Medical needs aside, I may be the luckiest mother in America.
(See what 4.5 hours of sleep does for a person?!)

Don’t Look Away

I know you see & want to look away. I know we all struggle. I know asking for help is looked down upon. I also know you rarely get what you don’t ask for.

So I am asking. I am not asking you to sacrifice your children’s college fund, grocery money, bus fare to get to work. I am asking for what you can help with- donate the amount of a cup of coffee ($1 @ McDonald’s, $2.25 @ Starbucks). Would you give up a cup of coffee for them?


I added to my family through adoption. Yes, the twins had trachs. Yes, they were all preemies. But they were supposed to be trach-free & essentially healthy by the end of preschool. Just as you parents entered parenthood with a set of expectations, I took on the care of my twins, then youngest, as any parent might.

As with all well-laid plans, things failed to go as planned. We celebrated birthday #7 with 2 trachs still in place. My “Christmas present” this year was that doctors were closing in on the diagnosis which would tie together the ongoing complex medical needs of 2 of my 3 younger kids: 1 of 2 life-limiting, degenerative genetic conditions affects them- but not the other child. She will likely continue to grow more and more healthy as she sits beside me watching her sister and brother struggle more and more.
These life events are par-for-the-course. But I need help to make our life more livable as we continue this complex medical journey. Repairing the aged electrical that inadequately meets the needs of my kids’ life supporting medical equipment is imperative & well beyond reach. Moving the washer-dryer upstairs so that it is accessible on the 4-6 days/week when I do the 20+ nebulized medication treatments of the day on my own. These are the things which would CHANGE MY FAMILY’s LIFE. Do you have spare change to change my kids’ lives?

7 days of 7 year olds

Another milestone: 7 years old. Sometimes in this life, you forget time keeps marching. Sometimes you feel like you won’t make it through. But then you arrive: 7 amazing years!












Another Socratic Sunday

“Nature does not hurry, yet everything is accomplished.” – Lao Tzu

OK. Maybe not laundry, or vacuuming…














Rare Diseases Affect Us

When you are the parent of a child who is medically complex, you have some “Rare” friends. The first few years of my twins’ lives, we chalked everything up to being born at 27 weeks gestation. My 33-weeker was thought to need the first 3 years or so to progress, develop strength in her muscles and voice box, to “get better”. If you have preemies whose challenges exceed the expected complexity of their birth history/prematurity, after about the age of 3 or 4, doctors begin looking for a unifying diagnosis to explain the “unexpected”- especially if they begin developing “new” challenges.

After the age of 4, it became very obvious that something was continuing to affect the strength & vitality of my children. Overheating in warm temperatures (+/- 70 degrees F) without exertion, having low exercise tolerance and experiencing worsening work of breathing and/or asthma symptoms while it has been treated aggressively for years, resulted in referral to high tech evaluations for possible Inborn Errors of Metabolism.

Tomorrow is World Rare Disease Awareness Day. We will all “Wear Jeans for Rare Genes”. My children’s genetic & metabolic assessments are ongoing & it is believed 2 of 3 may have their own variation of a very rare metabolic disorder- but we’re still not sure which one. The following is a list of disorders for which my children have been screened- it is not exhaustive- and a few diseases are included that affect a few of our close friends. Please learn more about Rare Disease & support research funding for the children, individuals & families affected by Rare Disease.

Mitochondrial Disease is a disease affecting the mitochondria in cells. It is a disease of cell energy- like running on low batteries- which causes progressive decline in many body organs, often resulting in early death.

Lysosome Storage Disease is another progressive Inborn Error of Metabolism. The link is to a video where Alec Baldwin simply explains the disease & how it may affect a child or individual.

A Congenital Disorder of Glycosylation is another disease of cell metabolism which causes decline in multiple organ systems & shortens the lifespan of affected individuals.

There are many, many more Rare Diseases that affect anywhere from a single known case to 5 known cases (2 being my children) to 100s of cases worldwide. Without research funding, these illnesses will continue to ravage the children & individuals in mine & other families. Please care WITH us & Wear Jeans for Rare Genes tomorrow.