Parenthood. Life. Down syndrome. Faith.

My life changed a lot when I found out my 3rd child would be born with Down syndrome. But then again, it really hasn't changed so much.

We're still living life, trusting God, raising our kids, and loving having a baby in the house.

Saturday, January 24, 2015

I'm not blessed, I'm just lucky

My entire adult life, I've believed that all good things are blessings, gifts from God.  I've always said there's no such thing as luck.  My adult vocabulary barely even includes the word "luck".

Like so many other things, my journey with Down syndrome has changed my view on blessings and luck.

Throughout my pregnancy and birth, I often felt very blessed that Cade doesn't have any serious medical issues.  He certainly could have...Down syndrome very often brings a host of medical problems, including heart defects (he had 5, but required no surgery), leukemia, seizures, and more.

But as I got to know other mothers whose children also have Down syndrome, I was troubled by something.  So many of their children have such a hard time.  I kept feeling guilty...why is their journey so much harder than mine?  Why is Down syndrome no big deal to us, but such a hugely enormous deal to these other families? 

In June, our small community of families grieved after a series of deaths.  Three babies in one week, one from a virus and two from complications after heart surgery.  It was devastating.  And the thought persisted, why am I blessed but they are not? 

To give someone a blessing is to bestow on them a gift.  A statement of praise or congratulations.  It's not something that "just is", it's a purposeful motion from one person to another.  If my son's health is a blessing, then that means God purposefully gifted him with health.  And if I believe that God purposefully gifted my son with health, then I have to also believe that he purposefully withheld the gift from other children. 

This made me feel terrible.  Every time I would comment on a Facebook post that "we were so blessed that his spasms were benign" or "it's such a blessing that his heart defect wasn't serious" I felt like I was punching the other moms. 

I understand the scriptures about why God blesses one person and not another.  Often it's sin, but that just didn't seem to apply here.  None of our babies are old enough to be sinful yet.  Perhaps the sins of the parents?  That doesn't fit either, I'm no more or less sinful than anyone else.  At least one of the families from June are devout Christians like us.  Are our prayers better than theirs?  No, I'm pretty sure they're not. 

One scripture jumps out at me as I try to sort this out.   

The rain falls on the just and the unjust.  (Matthew 5:45)  

In other words...luck. 

I still don't believe in the superstitious nature of luck.  Wearing the same socks every day won't make your team win.  Kissing a coin before dropping it in the slot machine won't make you rich. 

But the random nature of luck?  Absolutely.  Sometimes things just happen.  They happen to all of us.  This baby gets a huge hole in her heart, while that one has a perfect heart.  This child gets leukemia while 10 others miss it. 

Cade is pretty healthy.  We've had some bumps, but they're so minor compared to what other kids go through.  Our journey has been easy and I am so thankful to God for this.  But I no longer say that we're blessed by it.  We're just lucky. 

But always, always, super blessed to have this guy.  He is indeed God's gift to us, purposefully bestowed on us, forever cherished. 

Sunday, January 18, 2015

You're normal, you're not alone. I was there, too.

This is a post for all the new moms, all of you who've just found out that your child has Down syndrome. 

It's also a post for me. 

When I first found out that I was pregnant, I was angry.  I don't like surprises and I don't like being pregnant.  I wasn't sure I even wanted a third child.  So an unplanned 3rd pregnancy did not make me happy.  By 18 weeks, I was still sick and still hadn't come around to the idea of baby #3. 

Then I found out he would be born with Down syndrome. 

This is a dark truth, but one very common.  If you feel this way, you're not alone. 

I was so angry and distressed, I lay awake at night and thought it would be best if I would miscarry.  Some babies with Down syndrome unfortunately don't survive to birth and for a short time, I'd hoped that would be the case with me. 

I told God that I didn't even want another baby, so why on earth would he give me one with a disability?

I told you it was a dark truth. 

I'm not proud of the way I felt.  It only lasted a few nights.  After that, something magical happened: I suddenly felt very mama-bearish about this new babe and suddenly I wanted him desperately because he had Down syndrome.  But I digress...

To you, New Mom...if you feel this way, if this ugly thought has entered your mind...forgive yourself.  It's okay.  It's normal.  I think most of us felt that way at least briefly.  The thought will fade and you'll still be a wonderful mother to your newest blessing.  Even if you feel that way for a long time (and some do) it doesn't mean you're a horrible person, even though you're probably feeling that about yourself. 

I guess my best advice is this:  allow yourself to feel how you feel.  Give yourself that grace.  Go through the ugliness, I promise there is healing on the other side.  Down syndrome is not the end of the world, but when you first find out, it feels like it's the end.  It's a lot like the stages of grief.  But the destination is way more the end of this journey you get a baby!  An amazing little child whom you'll love instantly.  A child who will enchant you, make you laugh, and shatter every stereotype you've ever held. 

To me...I forgive you.  I forgive you for the way you felt during those first scary nights.  I see the way you love your son, the way he's your reason for getting up every day.  (Literally.)  I forgive you for the tears you shed because you didn't know any better.  I forgive you for yelling at God.  I forgive you for throwing things.  For smothering sobs in your pillow.  I forgive you for not loving him instantly.  After all, you had no idea that you were having Cade.  If you'd known all along that it would be Cade, you'd never have had a moment's worry, because you'd have known that Cade is incredible.

Thursday, January 8, 2015

I am THAT mom

Long, long ago, like 21 months ago, I never questioned doctors.  Clearly they know more than I do and I pay them to know more.  When nurses called and said that all test results were normal, I didn't question it.  I never once considered ordering the lab results myself so I could see the actual values.

If a doctor said jump, I jumped.  If a doctor said don't bother, I didn't.

It never occurred to me that the doctors might not always be experts.

But then there was Cade.  Even though I was a mother before him, he changed everything.   I needed to know all that I could about my little boy.  And I was given the advice by a former SSI judge to obtain every scrap of medical records.

The two created a new me.

After Cade, I've learned to question everything.  Not because I don't trust our doctors.  I do.  I trust them implicitly.  But I've also discovered that a special needs mama is an absolute expert on her child and often, her child's condition.  

At first, getting his medical records was fascinating.  Reading the doctors' notes was like sneaking into the back room and eavesdropping.  It was a novelty sorting through test results with their endless acronyms and numbers.

The more I learned, the more I wanted to know.   WHY was his white count often low?  Why is his alkaline phosphatase over 1000 when the range is less than 300?  What are these petechiae all over his body?  (yes, I can even spell it now!)  (And no, he doesn't have leukemia.  Whew!)

And the more I knew, the more I knew, if you know what I mean. 

I now know that Cade's ear canals are too tiny to see into, but you'll have your best chance in the left ear.

Drawing blood from a vein is easiest in his left inner ankle, but I have to get a doctor's order to draw from that location.

He eats 750-800 calories most days.  300 on days when he doesn't feel like eating, 950 on days during growth spurts.

I've had more than one doctor laugh (in a good way) and tell me that I really know my kid.  I've had others that thank me for making their job a little easier.  And I've had some that blow me off and check the right ear, even though it's fruitless and Cade hates it.

We've had mostly wonderful doctors, but sometimes their notes are inaccurate. I've realized...they're human.  Sometimes they make mistakes.  Sometimes they don't know everything. 

With all that I've learned about Cade, I've learned more about doctors and the industry of medicine.  And how important it is to speak up and be an advocate.

Last lab draw, the doctor handed me the lab orders.  I shuffled through them and realized 2 were missing.  He left to go print them, and while he was gone I counted through them again, ticking them off in my head.  Two more were missing.  I only caught the error because I knew what needed to be ordered and I knew what all of the labs were for.  The doctor was very happy to go print the others and I was happy knowing I'd saved Cade from having to return to the lab for another poke.

Cade's Care Notebook helps me keep everything straight.

It's been an interesting journey, becoming a medical advocate.  But the love for my son makes every phone call worth it.  He's my Cade!

Thursday, January 1, 2015

How do you?

The time has come, transition is beginning.  I am asked to write a few lists for you, things you should know.

Please know this...I love your son, and because I love him, I want you to succeed.  I want you to be a good mama to him.  I will help you wherever I can, just ask.

I'm sitting here, staring at a blank sheet of paper.  I'm supposed to list things about your son, like how he likes to be soothed and what to do when  he wakes at night.  But the page is still blank.  I can't get my mind to do you tell a mother all the things she should know? 

How do you explain what makes his hurts go away?  What soothes him to sleep the best?  How it takes three tries to get food into his mouth, but on the third try he'll decide he likes it and finish the rest?  How his eyes sparkle in the morning as if he's planning a day of mischief.  How he lays his cheek against yours when he needs a hug.

How do you?

I can't seem to adequately put into words how cute he is when he splashes in the bath, or how he flaps his arms and says "mama" when I walk into the room.  How I hope he'll do that for you, even as the hope itself breaks my heart.  Because, while I love him, he's never been mine and I've never forgotten that.  He is yours.

How do you learn in a few weeks what has taken me 9 months to learn?  Do you know that he cries when his diaper needs changed, and that that cry is distinctly different from his hungry cry?  How do I teach you that?

How will you know at night when it's time to get up with him and when it's okay to let him fuss for a moment?  Will you know to stay right with him in the bath, to read to him at night, to always use fleece jammies because he hates being cold?  Will you know how to snuggle him and how to give hugs and kisses and whisper that you love him?  Did they teach you those things?  I suppose some things a mother just knows, but I don't know what you know.

How can I teach you all of the things you need to know, because you're his mother?

I can't.  But I'll give it my best.