Random Thoughts on Surviving

I was intrigued by a comment left  in a recent blog post where the commenter wondered about my use of the word “surviving”  when describing the many experiences we go through as parents of children with special needs and more specifically, medical fragility. She thoughtfully expressed that by implying that we had  “survived” that we were also implying “burden and suffering and many more negative things.”

I appreciated her honesty and her thoughts as she is friends with a woman who has disabilities. She felt that the woman’s family would never use the word “survive” to describe their experience in raising their daughter. This may be so. I do not speak for all parents.

This comment got me thinking about the use of the word ‘survive’ and I thought about what it meant and if, in fact, I (or the thousands of other parents of children with special needs) had actually ‘survived’ anything at all. Perhaps, I was being somewhat melodramatic. Perhaps, there was a word of lesser intensity that could have been used in its place.

I decided to look up the actual meaning of “survive” to see if my use of the word was a bit over-the-top. There were several definitions such as:  to continue to exist, to stay alive despite an injury, illness, war etc., to manage to deal with something difficult or unpleasant, to continue to function or prosper,  to cope with (a trauma or setback); persevere after, to continue in existence after (an adversity, etc.).

And then I thought about some of the experiences we have had which include but are not limited to:

• a very traumatic birth where I was calling out our new baby’s name to please stay with us as I watched her struggling to take in air still attached to the umbilical cord that was attached to the placenta yet to be birthed
• an abrupt separation within minutes of her birth when a paramedic scooped her up and rushed her to a nearby hospital
• the 70 days or 1, 680 hours or 100, 800 minutes spent travelling the 56.3 kilometres (35 miles) between our home and the children’s hospital each and every day to sit by her side not knowing initially if she would live at all.
• seven sudden episodes of respiratory distress in a five year period resulting in frantic calls to 911 and a long moments of waiting for an ambulance to arrive not knowing if this would be the episode that she might not come out of.
• having to face the darkest night of the soul knowing that the chances are pretty good that you will outlive your child. Filling out Do Not Resuscitate forms is a not-so-gentle reminder of this reality
• experiencing over 365 days of broken sleep in a row including 8+ months of awakening every 1.5 hours to start or stop a feed while dealing with severe choking/retching episodes in between the feeding schedule while managing to continue to care for your medically fragile child during the day as well as the night on less annual sleep than most people get in a month. How is that for a run on sentence?
•  the physical and mental demands of holding, carrying and lifting your child for 8+ years  or 3, 104 days (seems much longer than that!) without the assistance or relief of a wheelchair or any other device that she will tolerate
• Countless hospital stays and all that entails (stay tuned for an upcoming post on this subject), medical emergencies, 3+ surgeries, and all of the miniscule daily occurrences that affect her health and quality of life

I would think that most or all of these experiences would come under at least 3 of the definitions of the word “survive.” My opinion might be slightly biased however as it is based on my perception of the aforementioned experiences.

This brings me then to the use of the word “survive” implying “burden and suffering.” We generally think of the word “burden” in a negative light. If something ‘burdens’ us, it weighs us down and perhaps if given the choice, we would do away with our burden whatever  that might be. The word “burden” is defined as: a. Something that is emotionally difficult to bear. b. a source of great worry or stress                                                                                                                            

Technically speaking, I suppose then by implying that we have survived (although I prefer the term thrived),  I am indeed implying a burden and suffering.  Frankly, many, many moments and days and even weeks sometimes were and are emotionally difficult to bear and I would say that caring for our sweet daughter is a source of great worry and stress but not for reasons that the commenter suggested. The burden of this particular mothering journey has little to do with our daughter having disabilities and more to do with seeing her in pain, seeing her struggle and knowing she will never walk, run, dance, talk, sing, hug, swim on her own and so on. These are the things that burden my heart sometimes. I would bet that if Meredith could speak she would agree that some of the things she has to experience (survive?) in this life, with this complex brain of hers, are a burden, too.

It is a pleasure to write and share my perspective and random thoughts on our parenting experience. It is always my intention to write honestly, directly and with clarity. I appreciate all of the opinions of those who read my blog which may or may not reflect my own.  I write from this mother’s parenting experience. Knowing that, for the most part, others read what I write and are left with a greater understanding, a sense of being understood or a feeling of being less isolated, brings me much joy and motivates me to keep writing and sharing.

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