Battles against terminal illness, anxiety, and life!

So, what’s it like?

To raise a child, a biracial child as caucasian parents, to adopt, to have a special needs child, to have a child with a terminal condition?  Exactly what is “what” like?  I take no offense to the question, and I would rather people ask.  That’s how we build understanding, by learning from each other.  I just wish I had a good answer.  It’s a loaded question.

To have a child is constantly more.  More sleeplessness, more happiness, more craziness, more excitement, more terror to fill your mind.  It’s more debt, more love, more work, more fun.  It can only be described as an adventure of epic proportions.  You really have no clue what will happen next. 

To have a biracial child as caucasian parents is as easy and as complicated as you can imagine.  When I see my son, I see my son.  I do not see the pigmentation of his skin, but nor am I “colorblind.”  I believe we have become more aware to the similarities and differences between our race and those of others.  We understand to ignore our differences and pretend they do not exist is nearly as troubling as believing one race is superior to the other.  We are sure to fill our house with books, toys, and items from different cultures and ethnicities.  I will say that it would make our jobs as our son’s parents a bit easier if we knew exactly what the other race our child is. I will also say that while there are some seriously ignorant people out there, the majority of those we have encountered have been accepting and fabulous.

The decision to adopt is very very personal.  The entire process is surrounded by controversy.  This one question, “What is it like to adopt?” is what I shall tackle.  This is not the place to discuss whether adoption is right or wrong, and nor will I enter into that debate.  To us, adopting, felt like a very long labor and quick delivery!  We worked diligently filling our paperwork, attending parenting classes, speaking with social workers, filling in the waiting, and preparing for an unknown child. 

When I first saw Braden being carried in, my throat went dry.  Forming words seemed like an enormous task, and I fiercely fought back thousands of unshed tears.  My biggest dream was coming true, and I wanted to explode.  Was this real?  Somebody please pinch me!  When he was placed in my arms, I hard knew what to say.  It wasn’t until we were on the car ride home that I whispered quietly, “Hello Braden.  I’m your mom, and I promise to love you from this day until the end of time.”  The rest of the ride was spent on the phone with my parents as they paced the floors waiting to meet their grandson. 

To adopt is to feel that a family is not bound together by DNA, but by love and loyalty.  It is not wrong to feel it isn’t right for you family.  You have to feel in your soul that the child you meet is meant to be with you, that you would lay down your life and fight until your last breath for them.  There is no difference between how much I love both of my children.  They were both destined to be my kids. 

Next question?  Oh, that’s right.  You wish to know what it is like to have a child with special needs.  Well, we are a bit new to this category.  We are still learning the secret handshake and all the acronyms that came with our membership.  Suffice it to say, if parenting is a full-time job, taking care of the extra needs is like adding on a part-time job.  Between doctors, specialists, extra exercises and therapies, and work that goes into educational planning, it’s amazing how busy it can keep you.  There is never a moment when you are not concerned that you are overlooking something or forgetting to ask a question of somebody on your team.

The last question, is the toughest.  What is it like to have a child with a terminal condition? Let me be very clear that I would give almost anything for there to be a cure for A-T.  There is not a day that goes by that I don’t feel sad or want to cry about something.  I am not depressed.  That much I can assure you.  I vow that if I felt that I was, I would cart myself off to get help.  I have family members who battle depression, and that is serious business.  I will say I am beyond devastated.  I find myself mourning losses that haven’t occurred yet.  Perhaps that is a coping mechanism.  I watch Braden run, and do my best to not think of the day that he will no longer be able to.  I watch his legs give out from underneath him, and my heart slows, my stomach launches to my throat, and I force back tears.  To know that your child has an incurable condition that will take his life, is just beyond description.  I can’t tell you what that is like. 

There are no words to explain what it is like to constantly worry how you will cope with such a loss as monumentally life changing and devastating as this.   There is no way to predict how you will handle any given situation.  All you can do is live in this minute.  You work to raise a child that knows how loved they are, how valuable their life is, to be a good person.  In short, it’s the hardest thing I have ever had to do, and I never take what time I have with either of my children for granted. 

Hug those you love.  Don’t think that because you have told them once that you love them, that they should just know.  Say it again.  Be the first to forgive.  Let go of pettiness, and learn tolerance and acceptance.  Smile and say hello to those that you see.  Don’t stare at those who are different.  See the previous sentence.  Learn that all humans have value.  There is no standard measure of people’s value.  Be humble.  Know that everything you hold so dear could be taken away, and so treat those with respect, honesty, and love.

I hope that answers your question. 

See you in a week!


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