Imagine how it must hurt, then, to be the father of a special needs child, and want very much to “make it all better”.
But no amount of making home-made equipment, expensive gadgets, or exercising with your child will result in them (insert future dream – “walking”, in our case, for example).
My husband has done so much to help Esther, and it does help, but for Daddy to accept that his little princess must struggle with things that he is powerless to change must be extremely difficult to swallow.
The silver lining to this dark cloud however, is the fact that to Esther, Daddy really is SuperDad.
There is no one she likes better to cuddle with, and no one can get her to sleep like he can.
He is the one she smiles and giggles for the most, and the one who calms her down when she is upset.
He is the only who has always been calm with her, while I often tear my hair out in frustration.
Daddy has all the strains of a job, and the added burdens of family concerns.
He gets up in the night with Esther before his day’s work and the hours of homework he brings back every night.
He always has medical issues on his mind, researching Esther’s condition and ways to help.
Future plans for travel, jobs, and further study are limited by the availability of medical care.
Dads do not typically come to all medical appointments.
Although my husband would like to, he cannot take that much time off work.
I usually make special request that he be there when I know it will be a difficult or important meeting.
As such, it often happens that the only times he meets with Esther’s doctors is when there is bad news.
He does not have the benefit of these hard-to-deal-with meetings interspersed with more pleasant ones.
The physio sessions where Esther does well or displays some new skill, or the neurosurgeon’s visit where we find out her hydrocephalus is gone, and he “doesn’t need to see us any more” (such wonderful words, from a doctor!).
Daddy not only has to support himself, but hold up Mom in the tough times.
My husband has been the epitome of this statement. I cannot tell enough examples of how he has upheld me, and given me strength to go on, when I was losing faith terribly.
Special needs dads put aside their own plans and dreams for their families’ interests.
Even essential things like jobs and studies sometimes take second place.
My husband was in the final exam week for university when Esther was born, 4 ½ months early.
He rescheduled 4 exams, finally sitting them after 2 weeks in NICU with all the noisy monitors and a baby on life support.
I know that some fathers choose not to be involved in their family’s life when a child is diagnosed with a disability.
I cannot begin to express the awe I have toward any parent destined to be both father and mother.
I cannot imagine looking after our daughter, or even our other healthy children, alone.
Any special needs parent sometimes just wants to lead a normal life.
I know my husband would like to be able to use his computer with two hands more often, without having to hold Esther, her bottle propped up against his neck, while he works, though he doesn’t complain.
One thing us moms need to remember is that, “He never asked for this either”.
It’s easy to get wrapped up in ourselves, especially if we are the one home with the children most of the time.
I recommend finding a good babysitter.
I know it is hard to leave our precious children, and sometimes the hassle seems more than it is worth: emergency numbers, dos and don’ts etc.
But I plead to you moms (as I myself am still learning), please take time for your spouse.
Find a babysitter you trust, and go out with your man – even if just for ice cream and a chat.
And for that time, try and switch off the worrying in your head.
Leave your phone turned on, but don’t check in on them.
Indulge your wonderful special needs dad in some alone time, away from the hubbub of “normal” life (whatever that means!).
They will appreciate it, and most definitely deserve it.