Saturday, July 12, 2014

No M&M's for breakfast

It is understood that two year olds know everything and must perform any and all acts on his or her own term.  Just picture one who can't see a lick, but insists, nevertheless, on navigating his own world without the help of others.  Yes, this is the stage we find ourselves with Jude these days.

When I hoped and prayed for a normal life for our Jude, I must have forgotten that this too would include the terrible and tantrum-filled year of the two's.  These are the years that are among the most trying we've experienced with any of our children.  The constant and unpredictable battles test the patience of the best and prove bedtime can not come soon enough.

During this period the tasks and objectives for a parent must remain steadfast, nevertheless; equip one's child with the appropriate tools for successful independence.  Giving in to each and every tantrum's aim, surely won't help in this effort.  And, if anything, saying "no" to a developing child is among the earliest, most important lessons one can ever be taught.

Jude, through his blindness, is no different.  As special needs parents, our aim is no different either.  We need to equip Jude with tools to successfully live independently- in every way.  So, although it's a great step forward that Jude is able to communicate his wants and needs, it's another thing entirely to let him have M&M's for breakfast simply because he expressed a desire successfully.

How easy it could be to overlook social and developmental blunders or faux pas due to earnest attempts to work through Jude's blindness.  If we focus simply on the visual impairments or limitations, we limit his abilities to blossom as a full person.  I can't tell you how grateful we are to have some wonderful therapists in our lives through the Children's Center for the Visually Impaired reminding us of this task at each turn.

St. Jude: Pray for us.

Thursday, February 27, 2014

Jude's two

When parents say it's hard to believe how old their children are turning or how fast they are aging, it's not hyperbole.  A child's birth is one of those moments in life that can be recalled like it happened yesterday.  The emotions and senses of the events leading up to and shortly after aren't easily forgotten.  Such is the case when thinking of Jude's arrival into the world and into our lives.

And, it is with these memories in mind, shortly after Jude's birth, that I say in all honesty it is hard to believe Jude is two. These words come as relief to us though, standing as proof that time does pass, and with time, pain eases into merely a memory.  But, these memories and past pains have value still- if for only to remind us of what we can survive.

No parent can appropriately prepare for a diagnosis like the one Jude received at birth.  Simply because one can never be fully prepared to hear such news, does not mean one's heart is unable to respond in love.  When I finally pushed aside all the fears and my anger about Jude's blindness, all I was left with- the only thing remaining of value- was a love for him.

And it's been two years of love.  Which, on one hand, seems like such a long time ago when I think about how worried we were about his prospects and seeing now, how far he's come and how hopeful we remain.  But, it also seems like yesterday that we brought him home, shared him with his brothers and tried to learn new ways to raise our baby.  And, we're still learning.

At his birth, I would have given anything to change him- to make him, in my eyes, more whole.  But, today, after two wonderful years, I wouldn't risk it- not if it meant Joanna and I might not have the exact same, lovable and perfect addition to our family.  As his brother Peter said after tonight's bedtime prayer, "God bless us for Jude."

Amen, Peter.  Amen.

St. Jude: Pray for us.

Wednesday, February 19, 2014

Carry that weight

I have heard, although never actually seen, that a mother in crisis would be able to lift a full sized car high enough off the ground to free her trapped child.  Luckily for Joanna and me, we have never had a child stuck beneath a car.  That said, I can't help but see the metaphor an appropriate one for Jude's blindness and the lengths Joanna and I will go to help him.

Jude carries the weight of a car on his back in his blindness and he is unaware of it now.  The clock ticks down daily to his eventual awareness of it.  Joanna and I race that clock, with help from the CCVI, to mitigate how heavy that weight truly feels on our son.  We want this awareness to be greeted with tools of empowerment, not thoughts and fears of inability.

Every day that passes where Jude grasps a new concept more clearly is like lifting another pound off of his back.  His mom and dad agonize on whether we'll have removed enough of that weight by the time Jude starts pre-school, or when he goes (and that he goes) to school with his brothers, or when his peers have a birthday party, that they want him to be a part of the fun.

With this knowledge, we lift the weight and we fight for our son.  We'd have it no other way- we'd fight no other way.  Fortunately we are not alone.  For nearly two year, we've been supported by our amazing family and friends and even friends of friends.  That's an unmatched feeling.

Jude is incredible and I mean this in every way possible.  But no one of us is incredible on our own.  He needs the love and support of many good people.  I know I do too.

St. Jude: Pray for us.