Things The Doctors Can't Tell You

When writing a comment on a friend's blog the other night, I found myself once again mentally reviewing everything we were told to expect after Lydia's birth all of those months ago. All negative, worst case scenarios which continue to play themselves back in my memories of what should have been the happiest time of our lives, waiting on the arrival of our own tiny miracle. The me I was back then found myself praying fervently that the sweet baby I saw frolicking on the screen of the ultrasound machine would carry just enough spunk inside her, just enough fire, to set those doctors on their collective asses when she finally made her appearance into this world. I even prayed that she would be born with her middle finger shoved high in the air.....
By chance, or by God's intervention, those prayers were answered (not the giving the finger ones...) and the tiny, sick baby we were told to expect was born practically swinging. A 7 pound wonder, with sweet chubby cheeks and fabulous hair, bucking the system which said she shouldn't be healthy, that said she shouldn't be as wonderful, as bright, as beautiful as she is from the moment that she took her first breath.
In keeping with the general tone of my last post, I find that while doctors can attempt to tell you a whole lot about what they think you should expect when you're expecting a baby with 47 chromosomes, there is even more that they absolutely could never tell you......

They can't tell you about the moment you first lay eyes on the baby that you have waited so impatiently, so fearfully, for. They can't explain the almost heart breaking love you feel that first moment or tell you how in an instant you are filled with the overwhelming desire to protect her from the prying eyes of the world at any cost. They can't say that the moment you first hold that baby in your arms, you will fall more in love than you have ever been in your life, or how you will be choked with tears because she is more beautiful than you could have ever imagined. They can't tell you how at that moment everything changes, YOU change, the person you were before falling away like a forgotten cocoon, the person you were always meant to be emerging like a butterfly. They don't say that what you feel for that tiny baby with the odds stacked against her turns you into someone who is almost super-human, someone who will put aside any discomfort, any fear, any reservations about being the mama (or daddy) of a child with special needs in an instant and become a roaring mama bear in the blink of an eye if you feel your child isn't getting the credit she deserves.

They can't explain how your family will open their arms and welcome this baby or how in the end, the thing you all feared most will turn out to be the very best thing that ever happened to any of you.
They can't foresee how hours spent on bended knees, crying out to God for your child's protection, will bring you faith strong enough to move mountains. Or that love can give you the courage to stand against the growing tide of opposition in an attempt to change the world and make it a better place for her to live in. Or that the determination of one tiny little girl will teach you more about what is important in life than anything else you have ever experienced. They won't tell you how every once in a while you will be completely stopped in your tracks, spellbound and breathless with the beauty that is this tiny miracle you get to call your own.

Your eyes will be opened to a world you never knew existed, a world that is often heartbreaking and senselessly cruel, but that same baby will give you the burning desire to DO SOMETHING. You will be folded seamlessly into an extended family, with arms all over the world, and will make friends that will last a lifetime. Yes, sometimes you will face the most difficult obstacles, like handing your life to a surgeon who will hold her tiny heart in his hands, but through the fear and heartache you experience, you will find that you are stronger than you ever imagined, capable of handling that which you truly believed you could not, because that's what it takes to keep that child here with you.

 You will burst with pride at the tiniest accomplishments. You will cheer at every small gain. You will be blessed with slobbery kisses, bubbly laughter, and beaming smiles. You will cry at the word Mama coming from her lips for the first time, because in that moment, there is no more beautiful sound on Earth........

 You will find yourself again and again falling to your knees before God in unceasing thankfulness that He knew exactly what it was you needed when you didn't have a clue yourself.

 Doctors don't know everything and it would be impossible for them to be able to tell you how absolutely amazing your child will be to you....how she will captivate everyone she meets with a flash of dimples and the twinkle in her big blue eyes, even those same doctors who blindly couldn't see past the diagnosis they gave you.

Have faith. God never makes mistakes.

Becoming the Change

As some of you know, I am working on a HUGE project for school which will be turned in at the end of the semester. It is called a multi-genre research project, which basically means that I will be doing 8 separate projects which all must blend together cohesively into one. I was having a very difficult time deciding on what to do at first so when the deadline for the theme came around, I went with what I always do as a subject...Down Syndrome. After quite a few days of panic afterwards about what I was going to cover in my project, how to tie them all together and have it reflect the focus of my degree (in healthcare) I had a flash of what I hope will be genius.

With all the discussion about the new prenatal tests that are swirling around in our community, the need for the education of the medical community on what it actually means to be the parent of a child with DS had become imperative. Education quite possibly could be the difference between life and death for a baby found to have an extra chromosome in utero. 

The doctors who give parents these diagnoses often have no real life experience with DS. Their information comes from a text book (which btw usually still use the dreaded r words to describe mental capacities of kids with DS. I know this from my own experience and I gotta say that the first time I read something to that effect after Liddy was born, I wanted to rip the page out!!) It is more often than not outdated and nearly always paints an inaccurate picture of what can be expected from our children. It is also important to note (and makes a difference, I'm sure) that the physicians who do the testing and subsequently give the results of that testing are obstetricians, who don't even have contact with babies after they are delivered. Based on the info being given to them, how can we expect any parent to make a well informed decision as to whether to continue with the pregnancy or to abort when those who are guiding them are poorly informed themselves?

All this got me thinking about my own experience. While there wasn't discussion after we received Liddy's diagnosis about aborting (I think we made our stance perfectly clear after the first AFP and it was too late in the game for those discussions anyway), during the constant streams of appointments that followed NO ONE had anything positive to say about what we should expect. NOT ONE PERSON. Months and months of continual bad news made it hard to grasp what we were facing (and also gave me a horrible case of white coat syndrome). Finding real, up to date, accurate info about what having a child with DS was like, what we could expect, and what it would mean for our future was left entirely up to us...and quite honestly, its not as simple to find that type of info as typing Down Syndrome into a Google search. It takes persistence and a level of grit to wade through the negatives in an effort to find something positive that at that point in my life I just didn't have in me (thankfully, my husband did.) 

I would have given almost anything for one person to tell us it would be okay. To reassure us that we were perfectly capable of being Liddy's parents. That our other kids would adore her. That we could fully expect her to do all the things we dreamed for her before we ever heard the words Down Syndrome. 

I've wanted to be a nurse for a long time. Not just any type of nurse...an OB nurse. That dream was born long before having another child was ever a consideration, back when I could have never imagined that I would find myself where I am now, the 34 year old mom of a child with "special needs". I truly believe that God planted that desire in my heart knowing already that someday I would be Liddy's mama. I just as strongly believe that He will place in my path someday a family who unexpectedly brought one of our special angels into this world, that I will be the one caring for that mama when she thinks her world is crashing down around her. And I will be that one voice that I so desperately longed for....the one that says, "I've been where you are. I made it through and emerged a better person because my child was placed in my arms. This is going to be okay. It's going to be better than okay. Its going to be the most amazing experience of your life."

I always say that someday when I have more time, I am going to take Liddy, go back to every single doctor I ever encountered after that September day when our world seemingly crashed around us, and offer my time, my energy, my new found knowledge to educate them and their staff on what they should be saying. Leave my phone number so that I can be called in if necessary, if wanted, to speak to parents in the same position we found ourselves in a little over a year ago. But the truth is this....if I continue to put it off until life isn't so busy, it will never get done. That's something that I can't accept because it's so important. So very, very important. Its time to put up or shut up. Become the change or stop complaining about what needs to be changed.

Which leads me back to my project. If I HAVE to do this project (and I do), why not create something that can be used in an effort to make a change? Why not use the knowledge I have, the friendships in the DS community that I have built, the resources at my disposal to put together something that is worthy of more than a grade, something that won't end up in my trash can at the end of the semester, something worth the time, effort, blood, sweat and tears that I will put into it to make it worth an A in a professor's eyes? Don't I owe that to myself? Don't I owe it to Liddy? 

This project, which many of you are helping me with by submitting your responses to my questionnaires and your pictures of you and your beautiful children, will not be filed away in the archives somewhere. I fully intend to make multiple copies and pass them out in the medical community, starting with those doctors I spoke of earlier. This project is the first step in my becoming that change that I believe in so desperately........

To all of you who have jumped on board already and submitted your responses, please accept a heart felt thank you from me to you. I have read every single word of every email and they have further inspired me to make a difference. There simply aren't words for how touched I am to hear all of your stories........

Anyone who hasn't participated and would like to, please leave me a comment or email me @ heidi_melton@yahoo.com.

“Be the change that you wish to see in the world.” ~Ghandi

A Meeting of Friends

Annie and I have been online and blogging buddies for quite a while now. Ollie Faith is very close to Liddy in age, and had her OHS before Liddy had hers. Watching her sail through her surgery and recovery had a lot to do with calming this mama's fears (as much as was possible). Annie's love and support held me up through Liddy's surgery, and when Liddy had to have surgery again to place her pacemaker, I got a message from Annie that if I needed her to come she would pack up the kids and be there in 3 hours. I knew then that I would have a friend for life.
We have batted the idea of meeting somewhere in between her house and mine for a while now but we could never figure out where to meet or what to do. When winter rolled around this year, and the girls both were getting ready to celebrate their 1st birthdays, I got a hankering to go hug these ladies in person...... So what else could I do but pretty much invite myself to Annie's house?? :)
Thankfully, Annie is just about THE sweetest woman alive so when I suggested a visit, she jumped right on board and even offered us beds for the night so we didn't have to make the 4 hour drive for a short visit and then drive home.
I've been counting down the days for several weeks now. I absolutely could not wait to officially meet Annie and hug on sweet little Ollie.......

 Liddy and I got up extra early yesterday morning, threw our stuff in the car, and took a road trip to Illinois.
The Reid brood was everything I expected and more. :)
Getting the chance to have two extra chromosomed cuties in one place was absolutely priceless......

Liddy was on her A game...oozing extra cuteness all over the place (which I frankly worried about since she's not much of a proponent of change). Little Miss O sadly did not feel well, but the two still had a great time playing together (and fighting over toys haha).

Annie and I had a great time too. Between playing with these two precious babies,chit chatting with each other, and meeting the rest of Annie's awesome family (Aubrie, Everett, Jade, Maggie, Caroline, Penelope, Kyle, Janie and Stu!), all in all I think yesterday was a truly amazing day.
I was a little sad to leave....although I missed my hubby (and my bed!).

Annie, thank you so much for your hospitality.
 I already loved you before. Now I am hopelessly head over heels in love with ALL of you. :)
I can't wait to return the favor one of these days (even though I have no idea where I'd put all of you in my tiny house!!!)
xoxoxoxoxo