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Tuesday, October 16, 2012

Says it all

Thoughts of a Mom
By Maureen K. Higgins


Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars

Tuesday, February 14, 2012

Results and a special birthday

Our trip to Cape Town for Bella’s EEG and MRI went ok. It was very stressful and she hated it, especially all the sedation she had with Chloryl Hydrate. Her MRI came back completely normal which means the last MRI we had was correct. The one she had when she was 1 year old showed possibly Polymicrogyria but the doctors say that it was just her ‘developing brain’ and you can’t read too much into MRI’s when a child is that young. So as it stands now she does not have cortical dysplasia. The questions is then, what is it? I doubt we will ever know.



Her EEG also came back completely clear which means the staring spells we have seen are not seizures and the abnormal / spiking activity we were seeing last year has no settled with the increased Tegretol dose and the change from Tegretol liquid to Tegretol CR tablets. We are not going to do the Modified Atkins diet and we may in fact decrease her Keppra a little bit. She has been doing well at school and has now moved from matching objects to matching pictures. She is also working on a PECS communication system where she will hand over a picture to indicate what she wants. We haven’t seen this at home yet but she is very good at taking our hand and leading us to where she wants to go and what she wants.



On Saturday 11th February it was Bella’s 4th birthday. It’s quite hard to believe she is already 4 years old. She wore a beautiful pink party dress that her Great Granny gave her and loved all the attention, especially when we sang Happy Birthday to her (repeatedly)… We are having a combined birthday party for her and Leo in March when Grant gets back from his trip to Russia. Bella has also started swimming lessons. She loves swimming with her Bentley belt so we decided she needs to learn to swim on her own no matter how long it takes.


Bella mesmerised by the candles and the singing - excuse the photo quality from my phone



Bella in her new party dress


Max and Leo are both doing well. Max has been in Grade 1 for only a month and I am amazed at all the words he is able to read already. He is like a little sponge soaking in everything. Leo is also developing at a rapid rate and is very close to walking and has learnt to wave. He puts his hand up in the air and if you give his hand a ‘high five’ he laughs hysterically. It is very cute.



Monday, January 23, 2012

MRI and EEG this week

We are going to Cape Town on Friday for Bella’s tests. We are having another MRI to see if we can find the mysterious cortical dysplasia which seemed to have disappeared in her last MRI (November 2010) as well as 24 – 48 hour EEG. The purpose of the EEG is to see if there is still ‘abnormal activity’ and to see if we can catch one of her staring spells on EEG and see if it is a clinical seizure or not. The plan is to switch from Tegretol to Epilim if it is a seizure as Tegretol is contra-indicated for absence seizures. We will also probably be starting her on the Modified Atkins diet to try normalise the underlying epileptic activity. It’s going to be stressful trip but I am pleased we managed to book it early in the year and to hopefully get some answers and a plan of action.



Anyone with experience with Modified Atkins diet, I would love to hear about it….