Silent Burdens

There's a mental strain with being a special needs parent that is hard to explain until you have experience it.  It's especially hard when the child is nonverbal.  Recently Bubby had a constant runny nose and cough.  We figured he might have allergies like Kent and gave him several different medications but to no avail.  His energy levels were low and even when going to the park he would either reufse to go out to play or turn and run back to the car within minutes of arriving.  We were unsure if this was due to his poor sleep (we still have yet to determine if he has sleep apnea) or if he was actually sick.  His appetite was low or inconsistent and we found a rash on his backside that resembled petechia (round small flat spots that indicate bleeding into the skin from capillaries).  The slow accumulation of these signs led me to worry about leukemia.

The occurrence of leukemia in Down Syndrome children is higher due to a genetic mutation that they have.  At the same time this mutation makes these children more receptive to the chemotherapy and they have a lower reoccurring rate than neurotypical children.  When Bubby was first born I must have read everything possible to understand some of the physical concerns that come with the extra chromosome.  I recognized the signs and since we had just passed his 6th birthday scheduled his well-check and ordered the tests to check his blood.

We were relieved to learn that his blood looks normal and since the petechia was above the nipple level and not constant it was not likely to be leukemia.  The allergy medications we were using was boosted by a prescribe dose of Singular and finally his sinus are clearing.  Whether due to a growth spurt, his appetite  and energy levels come and go but is more typical of him as of late.  We are relieved to know he is relatively healthy.

Someone wants cake!

On the other hand it was brought to my attention how much I keep a running list of signs and behaviors that is more than a typical parent does.  The other day we were at the library for a special needs Storytime and I could tell that it was time to go and we were close to that meltdown line.  My friend asked me how I knew since he was still smiling and laughing.  I cited a list of behaviors (nearly checking everything on the list) whilst putting on shoes and hastily gathering the others.  It made me realize that I keep other mental lists through the day that aren't typical for other parents. These range from therapies to be rearranged, appointments and paperwork all the way to the daily sleep or bowel movements of said child.  It's the weight of a caregiver and one that can't be shifted easily to anyone else.

These are the things we never really talk about, never really share. Its as if voicing them will give them greater power over our lives.   They are the silent burdens  that just become a part of the weight we always carry around until something happens to make it heavier or lighter.  I was so exhausted the few days after the 'all clear' came through.  I hadn't known so much mental and emotional stress had been weighing on me and I needed time to recover. Sadly another mom in our community posted that her child had tested positive for leukemia and my heart went out to her.  Now she was facing the reality of all the worries that had been running through my mind only two weeks before.

All the parents I know that have a special needs child love them dearly and we wouldn't trade them for the world, but when we seem flaky, distant or simply too tired to engage  - give us little leeway.  We carry more than you can see.