Wednesday, March 27, 2013

I just called to say...

One of the many things that I've been dealing with over the past several weeks is the response of people I love to the news that our little Buggy is super special.  Usually there is an awkward silence followed by a sympathetic pat on the arm, and a statement like, "ohhhh I am so sorry..."
I'm not offended by that response at all.  People don't know what to say.  Shoot, I don't know what to say half the time, and I'm living this.  Typically what follows this apology is a "but."  Here is where things get interesting.  I've heard a lot of things, "but, you're great parents so what a blessing for your boy," or "but, if anyone can handle this you can," or "but, insert your favorite theology lesson here..."
Now, again I'm not offended by these responses.  In fact, I understand them, and actually recognize the truth in them.  However, there are days when I don't want to hear them.  There are times when I'm tired of hearing the same things over and over.  Probably at some point in time, I'll write a discourse on what to not say when people you love are grieving.  But, that's for another post.
What I want to talk about today is what people should say.  Or more specific what a person did say.  One of my dearest friends called me yesterday.  I missed the call and, and as I prepared for another awkward conversation with someone I love, I actually thought about not calling him back.  My desire to talk with an old friend eventually won out and I called. To my surprise there was no awkward conversation.  There was little talk about Buggy, unless I was the one who brought it up.  In fact, my friend's exact words to me were, "I just called to let you know that I love you. I can't imagine what you're feeling, but I love you."  How amazing is that?
I guess my reason for posting this is to remind everyone that its okay with us if you don't feel like you have the right words.  Honestly you probably don't. Its okay if you can't think of a great lesson that God is teaching, or figure out the "plan" in all of this.  Honestly, you probably won't be able to, and even more honestly, I probably don't want to hear it.  Its okay if the only thing you can think to say is "Bobby, Lisa, I love you." Honestly, we love you too!
There is so much love in my life right now. So much! I am honored to be loved by you, and hope you know you are loved by me.  It is so amazing that my little boy is going to be covered in such a fuzzy blanket of love! And really isn't that every daddy's desire?

Friday, March 22, 2013

How special? More than you might think.

Well there is no doubt that our little Buggy is special.  He is my son after all.  Not to mention that he has the worlds' best mama and big sister in his corner already.  Plus, he'll no doubt have my sense of humor and the Kern great looks.  But just when you think you know exactly how special Buggy is, well he surprises you.
I told you in my last post that our son has down syndrome.  Downs is a chromosomal abnormality referred to as Trisomy 21.  Each human receives 23 chromosomes from their mother and 23 from their father, making 23 total pairs, or 46 chromosomes. The 23rd pair is the infamous sex chromosome (XY -  boys; XX - girls).  The 21st pair is the down syndrome culprit.  What is special about this abnormality is not that the 21st pair is damaged in some way, or imprinted with some sickly design (like the mizzou tiger) but that there is actually an extra copy of 21.  So, instead of a pair, there is a try-fecta.  Hence the proper name, Trisomy 21.  This copy is typically made during the cell division that leads to sperm and /or egg development.  There are different percentages given but the one I give Dev Psych students is that there is a 1 in 700 chance that a child will be special enough to have that extra 21.  That is about 1/10 of a percent.  Since Lisa is 35 now, that number actually skyrockets to 1 in 400 (1/4 of a percent) So, we've got the numbers. thats pretty special.  But just when you think you know exactly how special Buggy is, well he surprises you.
As part of our journey the past several weeks, we decided to get an amniocentesis done to confirm the down syndrome. *I know some of you may have strong feelings about having the amnio done, but we can debate that in a later post.* Anyhow, the amnio was done and the results did indeed confirm downs, but it confirmed a special form of down syndrome called translocation. Translocation down syndrome is the rarest form of DS and occurs in less than 5% of all down syndrome children.  Translocation does not see a third copy of 21. Instead, each cell has the usual 2 copies of 21, but also, parts of 21 that have translocated onto another chromosome.  What makes this even more special is that translocation is the only form of down syndrome that may be genetically inherited.  May be genetically inherited? Either it is or isn't right? Well its possible.  Its possible that one of the parents is a "carrier" of TransDS, but probable?  Well, again, numbers are not exact, but somewhere in the range of 4% of DS children have the rare translocation form, and only 1/2 of those children genetically inherited it from their parents.  I'm telling you this kid is special. But just when you think you know exactly how special Buggy is, well he surprises you.
I have no idea what our little man is going to surprise us with next, but if he holds true to form, it is going to be a humdinger!  My boy already has one of my finest traits...he doesn't do anything half-way.  If he's going to do it, he's going to do it right.  My son is special, partly because of his crazy amount of chromosome 21 particles, but mainly just because! How special? More than any of us know right now, but hey, isn't that every daddy's desire?

Thursday, March 21, 2013

What every daddy desires...

With this picture we recently told the world that our 2nd child was on its way.  At the time we took the picture we had no idea just how much this baby would impact our lives.  Just a few weeks after this picture was taken we learned two things: 1. that our baby was a boy and 2. that our precious son has down syndrome.

I will not lie to you, this was not the news that I wanted.  So many thoughts ran through my head that first day.  So many thoughts have run through my head every day since.  Most of those thoughts led to feelings of guilt.  I had dreams about what having a son would be like and in one instant it seemed as though all of those dreams were shattered.  Guilt. I'll never enjoy playing ball with my son. Guilt.  I'll never get to perform his wedding.  Guilt.  I'll always have to worry about people bullying him. Guilt.  I'm not strong enough to handle this. Guilt.  I can't watch my boy go through all of the physical, cognitive, developmental struggles that he will go through. Guilt. The more I read and learn about DS, the more I realize that many of these thoughts are unwarranted.  Guilt.  In prayers that have zero words from my lips because I'm not sure how to voice them, I hope for a miracle. Guilt.  I notice that most of my concerns are centered around the word "I". Guilt.

I'm learning that it is okay to feel.  Even guilt.  As I learn more about this chromosomal craziness, I'm feeling emotions that I don't know how to describe with words.  I'm processing in ways I never have before.

My son is developing normally so far.  No heart, brain, or gastro problems in utero. Love. His first HD ultrasound picture looks like he is flexing and kissing his bicep.  Love! His big sister has already named him Buggy. Love! His daddy is making plans to renovate his bedroom before he comes this summer. Love. His mama talks to him, sings to him, and even jokingly scolds him when he makes her sick.  LOVE! His family has rallied around him so much already. Love.  This boy is going to love comic books.  Love. He's teaching me life lessons already, and he doesn't make his debut for 20 more weeks. Love.

I'm having a son.  I'm so proud of him.  He is healthy.  He will be happy.  He is my boy.  And at the end of the day, isn't that what every daddy desires?