Wednesday, June 18, 2008

Somewhere.

I've always heard that you have to start Somewhere, so this is it.

For the past year, I've been reading other people's blogs in order to help adjust to Malea's diagnosis of Trisomy 21, more commonly known as Down syndrome (Ds).

What a HUGE help those blogs have been...strangers to me in real life have allowed me to laugh with them, cry with them, but most, and best, of all, they've allowed me to learn from them. I feel like now, on the eve of her first birthday, I have wrapped my head around our existence enough to share with others and help show them that life is probably nothing like you think it will be. And that's not such a bad thing. Did I believe it? No. But it's true. Now that I can see a beautiful little girl with opinions and a sense of humor and a love of her drum and a distaste for getting her hair combed into the cutest ponytails I can muster every morning? Wow, has my perspective changed. I don't know if I'm talented enough to put it all into words, but I'm now committing to try to share a little at a time for as long as I can.

When Malea was born, Ds was the scariest thing I could imagine. There was nothing worse in my mind (the medical community has done a pretty good job of keeping folks antiquated in this regard). I was devastated by the news and consumed myself with getting all the best I could for her. When I wasn't busy, I was crying. My husband served as my rock, going through his own internal battles, but nothing visibly near the outward collapse he witnessed with me. And all of this just in time for our first anniversary!

I didn't tell many people. One thing I remember reading online was that people would take their cues from me. I didn't want them to pity us, or Malea. So only those who I trusted the most or who reached out to see if there was anything they could do to help or maybe just caught me at the right time got the news directly from me. I didn't want to risk crying and "screwing it all up." I didn't want to risk my baby's diagnosis (dx) becoming the latest gossip amongst a group of "friends." I didn't want family members who hardly came around to use that as a judgment against me. Oh, there was so much initial inner turmoil. I recall the one person I told who I felt was a close friend - and I've never heard from them again to this day. So, yeah, for any new parents reading this: it's not the baby that will cause you heartache. Your child will more than likely sleep like an angel (other new parents will marvel!) and be much more typical than you first imagine when you receive the karyotype results.

I began drafting an email to family and friends while still in the hospital with Malea after she was born. I felt like I owed so many people any explanation. I had already drafted the typical "Mother and baby are doing well" message to be sent out and well, I wasn't. So, what to say? All or nothing? Based on the last paragraph, you can see what I chose.

All that to say, here we are 365 days from me being all loopy in labor and we're F-I-N-E. Not to say that some days aren't more challenging than what some parents of Malea's peers may go through, but I'm thankful for what we have. We are not suffering. We've since moved across the country. The good part of that being that it's allowed for some seamless relationship purging, the hard part being missing out on the presence of those that really did come through when we needed support.

As we move from tomorrow and beyond, I'll keep you updated with the happenings of our beloved Little Crazy (per Daddy)/Bourgie-Bourgie (per Moma). Milestones will be celebrated, myths will be put to rest, lessons will be taught (I'm already drafting a post on the "r" word in my head), venting will be done, and you will see that we're just as "normal" as any other family...with just a little something extra.

21 comments:

Nelsy said...

Man you can't EVER out-run the sparkle cupcake. But you know what the fortune cookie says: she who does not accept challenge, cannot gain reward.

Happy Birthday Malea!!!

And congratulations Smiths - she's beautiful and looks so happy :)

Chereese said...

Chrystal, a YEAR already? Oh my gosh. How time flies and waits for no one. And what a cutie petutie Malea is? She doesn't like the cupcake thing but gettin' down on the pizza crust huh? Good for her. Her dental visits won't be all that expensive if she keeps up this good habit. :o)

I just want to say that you and your hubby are AMAZING parents! I've admired the strength in you since day one when having the pleasure of meeting Malea. May you continue to LOOK TO GOD and NEVER doubt HIM. He will provide you ALL that you need and some of the things your heart desires. Just continue to BELIEVE in HIM and have CONTINUED FAITH. He couldn't have picked two the greatest people to be parents!

Your gift to Malea . . . "a mother who isn't afraid" is the best gift. She will LOVE you more each day for this. And I know she senses it. You're AMAZING, mom. Keep it up!

Thank you for sharing your lives with us. I am always tickled pink and full of excitement when I get an email from you w/ the next chapter and pictures of the lil princess. Keep 'em comin! You are such a BLESSING!

Believing GODs best for you always,
Chereese

Mindy said...

Chrystal, That was beautiful! Of course it got me all teary eyed and choked up. That was the best gift you could have given Malea! She will treasure it forever once she's old enough to understand herself.

Malea is the luckiest little girl to have you as her Mommy. We are the luckiest to have you as our friend.

Happy 1st Birthday, Sweet Malea!

With love, Mindy & Cali

Kim said...

I can't believe how fast this year went. Malea has the best parents in the world and is the luckiest little girl ever! Chrystal, you and BD are the strongest people I know. The three of you will find strength in each other.

Donna said...

"Was Up" lil sis??????

AWESOME TESTIMONY!!!!!! A year???? WOW!!!!! All I know is that you better send me some updated "pics" of my baby:-) Love Ya!!!!!!! Thank you for sharing!!!!! Miss Ya!!!!!

Jocelyn said...

Okay so you have me sitting at my desk all teary eyed (which is a VERY RARE occurance for all that know me). I am so proud of you for giving Malea a "mother who isn't afraid". I know that Malea couldn't have chosen better parents. And Feliz Cumpleanos Malea!!!!

Lindsey said...

Woah! A year! It's all moving so fast and you are keeping pace like a champ. You managed to put so beautifully all that you are feeling and learning, I thank you for sharing. I think your gift and your words are an enlightening present to all of us not just Malea. You are stronger than you ever knew and I think that's what I am seeing. I am glad that you and your husband have each other and that you both have such a lovely lil gurl. I am so proud of you for getting the advice you needed and realizing that you can handle anything the "crittle" way. Don't doubt your self or your path in life. Keep us posted on EVERYTHING! Give Malea a big sloppy hug and a kiss for her birthday from me. I love you!

sheree said...

Chrystal,

That was very inspiring. I can only hope to give the very same gift to my daughter one day...hopefully one day very soon, I can feel it!

Happy 1st birthday sweet Malea!

-Sheree

Michelle Lane said...

Crystal,

Being a prent of a child with DS, I have never read a commentary so inspriational, heartwaming and beautiful than yours. God chose two AWESOME people to want over his angel here on earth. Malea is beyond blessed and has a gift that no other child could ever have on their 1st birthday: YOU as a mom!

Love, Michelle Lane (Monica's friend)

Fatimah said...

First I want to say WOW! I have learned so much from you with respect to your strength, your courage, and your quest to make a quality life for your family. You make me aware of things and issues that I never paid attention to before like the ( R) word. Now, I don’t let my kids say that any more. Crystal I am so proud of you for being you, and Malea has a beautiful, educated mother who is very introspective… Maya and Mone’ will be jealous. I love you and I am grateful for your friendship. Oh, I am the worst auntie tima in the world for forgetting the baby’s b-day. Tell Lea-Lea that auntie is sorry. Happy belated B-Day auntie’s shucka-pucka!!!!

How Sweet It Is said...

Chrystal, WOW, you are the bomb!! I am very proud of you for sharing your personal feeling with everyone. I know that was a big step for you.We have not talked in a while but I knew through the (grape vine) that you three were doing just FINE. I hope you always knew & know that if you ever need anything I am just a phone call or e-mail away. I wish you all the best with your family and I know that the best is yet to come for yall!! I love you and always will

Chami

desbjs said...

CTS - DES - MDS,

We love you very much and remember we will ALWAYS be here for you.

Love and Kisses,
MOM and DAD

C said...

To the Smith-Smiths,

Chrystal, this was so beautiful. I didnt just get teary eyed, I cried.

I can remember the elusive phase and I remember conversations of blessings where you least expect them. I am so happy for Malea, Dwight and most of all YOU that God has seen fit to unveil the secret of pure love (His most precious gift) to your family.

Malea is the most beautiful little sweetie I've ever seen and you three enjoy the journey.

I can only imagine how wonderous life will be seeing it the way a true innocent does/will.

I will always support you.

On another note, HAPPY BIRTHDAY MUNCHKIN. I can't wait to meet you!

Crystal (from the Young-Youngs)

Danielle said...

Chrystal,

Happy Birthday Malea,

I am very happy that you shared this. I have believed since the day Malea was born she is a special gift from God. I am happy to have you as part of the family and consider you my sister.I get so excited when I see Malea's pictures and she how she is growing and developing. I keep her picture up at work so I can see her little precious face everyday. It reminds me that things are all right in the world and it brings a snile to my face. Even though I can't see her as often as I would like, she is still in my thoughts daily. I want the absolute best for her.

I know that you and DJ have her best interests at heart. I am believing God that she has a very bright future ahead.Please send her to stay with auntee so I can pinch those little cheeks!!


Love,
Auntee Danielle

Doctwin said...

Dag Chrystal, you got me all crying at work. . . . I am so proud of you taking that step. Congratulations on your growth spurt!!!
Lea . . . . I say Lea!! It's your burday! It's your burday!!! Congratulations!! You made it!! You made it a whole year with those parents. I know we dont get to pick our parents, but we have to make the best of what we get in life. I dont know how you did it, but you did. Now there are years to come. It may be a long road ahead, but as long as you keep God first, raising those two shouldn't be too bad. I love you and I miss you.

Auntie Netta

PS - tell what's his name I said hi

miri said...

"I recall the one person I told who I felt was a close friend - and I've never heard from them again to this day." - wtf? That's so wrong. Every new child is special - some specials are just a little different than others. Why would you pull away from a friend because of that? I don't understand that at all.

I'm glad Malea found you and BD. Extra special kids deserve extra special parents and you guys sure fit the bill. I love looking at pictures of her happy, smiling face. She's beautiful - but given her who parents are, that was a given.

I can't believe she's already a year old. Where does the time go?

LilJohn said...

What a touching story! Thank you so much for sharing it with the world. It definitely gives me courage as I make decisions for my future.

You and Dwight have such beautiful spirits that I am certain are manifesting themselves in Malea. Please continue to share!

Happy Birthday Malea and love to you and Dwight!!!

Umm Amirah said...

For my girl Chry-stal,
I never really saw the DS in Malia. With a crazy mom who would (lol). I would have never doughted the strenght in you, you showed me that in high school.

Blessing in abundance for you and your family. The world has changed and the view of DS is more a stepping stone than a 'handycap'. Know that services for her are in abundance and in a couple of years NO one will know. She will SHINE like her mommy over all the trials and tribulations.

As mother's we worry over them, coddle them, kiss their 'owees', and they in turn warm our hearts and our live.

Oh thank the Creator for little girls. And thank HIM for yours.

Peace and blessings
Umm Amirah (kesha)

Chantal and Ryan said...

Chrystal, Dwight, and Malea;
You are a beautiful family. This blog is inspiring. Malea is very blessed to have parents like you. Special needs equals a special love that most people will never experience. Hopefully we get to see Malea very soon! Can't believe she is already 1! Happy Belated Malea!!
Love, Chantal and Ryan

Rodney Caines said...

Chrystal,

GOD never puts more on us than we can bear. Every situation in life is a chance for us to grow and be a blessing to someone else. I think it is awesome that you decided to share. Continue to seek GOD first in all that you do and every decision you make. Malea is beautiful and is GOD'S most precious gift to you and Dwight.

Stay encouraged in the Lord....I Love You!!

R. Caines KP c/o '97

SHANNON V said...

S2... wow... I am so grateful for your gracious sharing of Malea's diagnosis. I did not know, and I must tell you that I agree that this is not a situation to be handled, but a life to be lived, with something a little different, and that is absolutely okay. I really hope to be the one on the plane on the way to Monterey with husband and kids in tow to visit and share our life experiences over the past wow, two years almost. I really miss you and regret not having kept in better communication while you were pregnant with Malea. That's something we can talk about over a beverage and maybe some fried chicken and brownies :-) If I wasn't there and you needed me, please charge my head and not my heart. I love you, S2 and really look forward to the next level of our friendship and lives together with family...