Dealing with the diagnosis

8 Apr

20130804-142122.jpgThe picture above was taken in the NICU the night that Rosalie was born. I finally was able to get out of bed and into a wheelchair to take a stroll down to the NICU. She was so tiny and absolutely precious. She was a big girl for a 33 weeker – 6 lbs 9 oz. Everyone comments, “you must have been off on your dates.” I definitely was not off on my dates. This was a very well planned pregnancy, so I know exactly when everything happened. Gestational diabetes is one suspicion, but I passed the glucose test, so I dunno. I just have big babies! Mary Beth was 8 lbs 12 oz at 38 weeks.

Anyway…I stayed in the hospital from Monday to Friday. I just kept delaying the inevitable…leaving the hospital without my baby. When Friday finally arrived, I spent the morning and part of the afternoon in the NICU with Rosalie. Will left to get lunch and about an hour later he calls me to tell me he is sick. Perfect. Now who is gonna pick up my crazy emotional hormonal self and take me home? My dad. I remember the nurse laughing and saying, “well, nothing that has happened to you this week has been ideal…why would that change now?” She was definitely right. (Sorry, Daddy! I love you, it’s just that I imagined my husband being the one to weather this storm with me!)

He came to pick me up and once I was finally discharged, they threw me in the wheelchair and we started the long ride through the halls and lobby to the main entrance. That was awful. Here I am, being taken out with all of these beautiful pink flowers and balloons, and no baby in my arms. I got in the car and just started hyperventilating. I don’t think I have ever cried so hard. I remember my dad holding my hand and asking what was wrong.

“I DON’T WANT TO LEAVE MY BABY!!!! THIS IS THE HARDEST THING I HAVE EVER DONE.”

I sobbed and sobbed the whole 5 minute car ride home.

We pulled in the driveway and I pulled myself together, knowing I could not act like a maniac in front of Mary Beth. Opening the door and having her run to hug me was so wonderful. I just sat down on the floor and hugged her tight. But as soon as Mary Beth was in bed that night, I hopped in my car and drove myself to the NICU. Yes, I know, I was not supposed to drive so soon after surgery, but I didn’t care and I was honestly fine. I got a little scolding from the NICU nurses and after spending a little time with Rosalie, they made me go home and get some rest. I must have really looked bad because the next day they kept talking about how much better I looked! πŸ™‚ I was completely exhausted.

I really miss the NICU nurses. They were awesome. I never had to worry about Rosalie because I knew she was in such good hands. They cared for her (and every other baby) like she was their own. They were so wonderful and helpful. Dr. Young, the neonatologist, was wonderful as well. SGMC is lucky to have him. (He is the one that had to have the depressing conversation with me on the operating table.)

With each day that passed in the NICU, Will and I wondered more and more, “does she really have DS?” We could not see any of the characteristics that we were told that she had. (We only said this out loud to each other & maybe two other people.) The chromosomal test would be the definitive answer and we did not expect the results for 2-3 weeks. Well…one evening during the second week of her NICU stay, I was rocking Rosalie when Dr. Young pulled up a chair next to me. He had some papers in his hand. I can barely type this because it just makes my whole body go numb. (Now I’m sitting here staring at the screen because I can’t bear to type it.) I don’t remember how the conversation went, but once I realized what he was about to tell me, I wish I had stopped him & made him wait for Will to get there. Will & I had been SO STRONG. So so strong. But this moment made me realize how much Will is my rock. Dr. Young showed me the papers and began talking to me about chromosomes and how we have two of each but Rosalie has three of her 21st, Trisomy 21, Down syndrome.

The tears just started flowing. I couldn’t be strong anymore. Now there was no question. Rosalie has Down syndrome. That was a tough night. Tough. Will finally got there & I tried to relay everything to him (Dr. Young had to go). I remember getting in my boat (what I call the Suburban) that night, calling my mom, and I was turning onto Patterson, sobbing, trying to tell her & I could hear it in her voice too, she was just as heartbroken but trying so hard to sound strong, so I kept the conversation short so we could both hang up and cry.

Now that I’ve had a couple months to process, it is not sad anymore. But at that point we were grieving. What would her future be like? Would she be able to make friends? Would our friends & family accept her? Would she graduate from high school? Go to college? Have a career? Have a boyfriend (not until she is 30, of course!)? Get married? Have children? And then my selfishness came out – Would she live with us forever? Would Will & I ever be able to go out on a date again? Or go out of town & leave the kids at home with Grandma or Mimi & Mac?

Yes, life would be different. Very different. But I am here today to tell you that life with Rosalie is…..I don’t even know how to describe it. Joyous! Happy! Fabulous! Now that we are almost 3 months into this journey, my eyes are open. We WILL have a “normal” life, it’s just a new normal.

I have SO much more to write about. But i can’t let every blog be as long as a novel! I hope you will continue to follow us on this journey because it is life changing!!!!

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8 Responses to “Dealing with the diagnosis”

  1. Shalae April 8, 2013 at 11:11 pm #

    Christina and Will, I have been following your journey and you both are simply amazing to me! God chose two people, who are joined as one to go through this life challenge together. Christina, your words are said in such a beautiful and pure way. A mothers love allows us to see nothing but perfection in our children, no matter the circumstance. Rosalie is absolutely precious and so blessed to have the two of you as her parents! I lift you ALL up in my prayers daily! May God continue to give you both strength in the days to come and I look forward to following you both on this journey through your blog! Love u both! SHALAE

    • sogamom May 15, 2013 at 10:07 pm #

      Thank you so much, Shalae! We really appreciate your sweet comments and especially your prayers! God is listening! Love y’all!!

  2. Alaina April 9, 2013 at 7:56 am #

    Christina I love reading your blog!!!! I hope you know just how much we love you, Will, Mary Beth and sweet Rosalie!! You have a wonderful beautiful family and are so blessed!!! And I love being able to hear about your experiences since we don’t get to talk too much !! πŸ™‚ I love you!!

    • sogamom May 15, 2013 at 10:04 pm #

      I love you & all of the B & L family! πŸ™‚ (and P & G too, of course!) Thank y’all for all of your love & encouragement thru this & thru everything in my life. Love y’all so much!

  3. Sherri Felkel April 13, 2013 at 12:34 pm #

    Christina, I enjoy reading your blog! My great nephew and his wife have a 4 year old little girl with Downs Syndrome and she has been the greatest blessing and joy for our family! I believe God chooses special people to parent DS children. There are so many opportunities for them now. She started going to public school when she was 3……..I could hardly stand it….knowing how cruel kids can be……but she has thrived and her speech is so much better! She loves it! It’s scary having a child with a disability, not knowing what the future holds. But it’s really that way with all children if you think about it! Stay positive and continue to follow God’s lead….she has a purpose for being here!

    By the way, I work with Marianne Soper and she showed me your blog!

    Sherri Felkel

    • sogamom May 15, 2013 at 10:02 pm #

      Thank you! It is the very same with all children, like you said. Any child can have delays, Down syndrome or not. Our oldest, Mary Beth, did not crawl until 11.5 months & did not walk until 17 months!! She had a little low tone, but she was mainly just lazy! Lazy is one thing that Rosalie is NOT! πŸ™‚ I would love to see her beat MB to those milestones! Of course, we do not focus on that, but wouldn’t that be great!? πŸ™‚ Thanks for your comments!! I love Mrs. Soper! πŸ™‚

  4. Leah Conner April 19, 2013 at 5:53 pm #

    Along my own journey of being a parent of a daughter with DS, I have met many parents of special needs children. Some are positive and some spend way too much time considering the negative (which is probably true for any parent). But that’s just to say that I love your attitude. πŸ™‚ We all need time to process changes we haven’t prepared ourselves for, but it is very obvious that you are headed for a wonderful journey with your daughter and the rest of your family! So awesome! I guess one thing I sometimes need to remind myself of is that every parent has both joys and struggles with raising kids….and they’re all uniquely different. πŸ™‚

    • sogamom May 15, 2013 at 9:56 pm #

      They are! I completely agree! And these issues we are dealing with now could be seen in any child. Rosalie has not been any different from Mary Beth, just a few more doctor visits & hospital stays! πŸ™‚ I really appreciate you, Leah! And I really enjoy hearing about Brenna. I used to be so worried about Rosalie’s future, but hearing about Brenna makes me so excited about what is to come. πŸ™‚

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