The tapestry of the life of a medically complex family

Archive for the ‘adoption’ Category


Y does it always feel like it’s my fault? Like it’s a personal failure? Like there was something I could have/ should be doing?

Tomorrow my son has an appointment with his neurologist at the Autism Spectrum Disorders specialty clinic we go to. We moved the appointment up a month because he is having significant anxiety, which is causing out of control behavior. Behavior that looks like an increase in motion when nervous- regardless of setting, footing, seated, STANDING on an exam table.

And he hurt my upper back. And we were in the pediatrician’s office. And I couldn’t push through the pain so I had to ask the nurse to step in. So the pediatrician thinks he needs meds for his anxiety- and maybe impulsivity.

And my response is… about me. About how if I just worked harder on his behavior, on teaching him relaxation techniques explicitly, on working harder to give him more skills, somehow I could have changed this path. As though I, his mother in every way except uterine growth, can battle it ALL. The genetics I have no real information about. The exposure to cocaine and its neurological impact. The turnover of nurses intended to be here to help with his diverse & dynamic medical needs.

Tonight I am feeling afraid of the impending added med. Tonight I am feeling like I have failed to give him tools I should have in order to avoid this path. Tonight I am feeling sad about the limitations of my capacity to “make it all better”.

Hoping it goes well. All I can do is give the doctor all the information she needs to make a good decision on what to do. And then follow through while continuing to try to work on all the skills that may help him to manage things better on his own in his future.

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?!)

Foster Adoption is a GREAT way to build a family

I could not say this better myself.



Truth Hurts

Today I told my kids the truth. An ugly truth. A truth that as the words flew from my over-tired, fed-up, beat-down mouth, I wanted to un-say. A hundred times your children ask- the same things, over & over, about family they miss. And the only truth, is a horrible truth, an ugly & dark & hurtful truth.

It is not my truth, nor a truth held true in our view, but a truth to one day face.And I hate myself for speaking it aloud.

Blood is Not Always Thicker than Water

There are people the world over who believe the bonds that are most enduring are the bonds of birth: “Blood is thicker than water”. Within my immediate household, these words have been disproven again and again. 3 of my 4 children joined my family through adoption. My children are loving and close with each other in a way I always have hoped my children would be. My youngest 3 share biology but they all hold my son & my hearts- bonded as family, across bloodlines, across race. We are a real family.

A Parallel Life

My family has lived in New England for multiple generations. My Mom’s family was originally from New Jersey but even her sister moved to New England after her parents died. My Father’s family lived back and forth between a few of the neighboring states here, but always New England after their family arrived in the US during the Potato Famine.

Most of my family, including first cousins, live within 250 miles of Boston, MA. Of 12 first cousins, only 2 live outside this region. There are frequent family get-togethers & the children of my sisters & cousins know each other well from frequent connecting at these gatherings. Well, all children but mine.

Because of my children’s health challenges & susceptibility to illness, we rarely get together with my family members- even those who live 10 minutes away. My nieces and nephews attend schools and gymnastics classes and … birthday parties. [scandalous!] These outings are a part of childhood for most children the US over- but my kids catch everything [by "everything": they caught Scarlet Fever after attending a RedSox game last June- yes, 2011, not 1906...]. To keep healthy, we bow out of every family gathering when one kid is sick- or ANY relative is ill or feels like an illness is coming on.

When my kids came home, I thought my family was ready to welcome them with open arms. We talked of sharing dinners, playing in back yards, walking along our local bike path… Then my kids seemed a whole lot sicker than my family had prepared for… There were more needs, more medical treatments, more emergency room visits and in-patient stays. One relative even hangs up when I call from the ER- treating each of our emergency trips as tho they are “attention-seeking” vacations. Sometimes you want to just nod & say: “Yeah. My kids are checking in to the Club Med floor here at Children’s…” I live a parallel life with my family- nearby, following along, but never quite in the same place.


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