Thoughts from Lanie:
I am not going to lie… I cried a lot during my pregnancy. A lot. I was scared and wondered why my daughter was the one who had Down syndrome while people all around me were having these adorable, perfect, and healthy little babies. I can honestly say that having Annabelle is 1,000 times better than being pregnant with her. My tears have dried up. They have been replaced with a commitment to love her, teach her, and grow with her. I always knew that I would love her, but after she was born, I was reminded of how unconditional it would be. I am truly looking forward to my future with her. I can’t wait to watch her grow and thrive.
So far, life isn’t any different having a baby with Down syndrome. We have had a few extra doctor appointments since Annabelle does have two holes in her heart that will need repair, but other than that, nothing has changed much. Our life is good, and happiness is still a choice, just like it was before she was born.
For the past few days, I have looked into her precious eyes and know that she needs me. She needs me for comfort, for food, and for love. And, honestly, I need her too. She brings me joy. Her smile melts my heart and fills that empty place in my soul that was so terrified that my life would never be the same. Today I am thankful for all three of my wonderful children. They keep me grounded. They give my life purpose. -Lanie. mom to Annabelle
Thoughts from Lanie:
I am often reminded of the popular saying of “replace your expectations with gratification.” I thought about this several times when I was pregnant with Annabelle. I thought about how lucky I was to be able to have a baby as some couples try for years and years and never succeed. I thought about how lucky I was that she only had Down syndrome and not a more severe diagnosis that would take away her enjoyment in life. I also thought about how blessed I was to be a citizen of the United States instead of another foreign country that doesn’t allow for a free education system for all children.
Since Annabelle was born, this quote still resonates with me, but in a different way. I am very thankful for her. I know that she was meant to be my daughter. However, I still have high expectations. I am not giving up. I am not throwing in the towel. I look to her future with grate optimism and an understanding of the extra work that it may take for her to graduate high school, go to college, get a job, etc. I will not set low standards for her. I will be by her side every step of the way to assist in making her dreams come true and reaching her full potential. I am up for the challenge and welcome this unexpected journey in life. -Lanie, mom to Annabelle
I’m so glad Lanie has sent us an UPdate on Annabelle, even though I know she must be exhausted from the last several days since Annabelle’s surgery. Both mom and baby have been in the thoughts of so many. See her post after my comments.
Lanie also sent along a picture taken in the ICU, but she admitted she wasn’t sure if we should post it or not. I also gave this some thought, as it can be very difficult to see such tiny little ones so soon after major surgery. I decided to include it for several reasons, though I know that some of you new moms with an upcoming surgery looming over you may find this photo hard to look at.
I included the photo because I want everyone to realize how resilient babies are to major surgical procedures and that their recovery is usually amazingly quick. Before my son Paxton had surgery (he does not have DS) to his lung and heart, parents tried to make me feel better saying he would do just fine. But it was very hard for me to understand until we had gone through it ourselves. Another positive side to having surgery so young is the child likely won’t remember it.
The next reason I included this photo is it represents something very important about The UPside. We parents have many struggles and stressors but by golly ( I know – outdated phrase used by my grandmother) we stand strong, keep going, hold our heads up, and become better people. As Lanie states so well below, our children make us great. And for that – for all our hard work and worries and challenges – we should be proud! Dr. Julia
During our stay in the hospital the last few days, I began to think about how frequently I talk about how I want to maximize Annabelle’s potential. While this is true, I think it may be more of a two way street than I had once imaged. Since she has been born, I have begun to realize that she brings out the very best things in me. I have become more patient, more flexible, and more compassionate. Even though I consistently work to support her development, I am confident that I am growing along side of her. She has called me to be a better mom and the kind of person that I had the potential to be. She helps me to know myself better and to prioritize the most important things in life. Annabelle has encouraged me to be a better friend, daughter, wife, and school counselor, and for that, I am forever thankful. Lanie.
I just wanted to let everyone know that baby Annabelle is out of surgery. The procedure went well. She and family are waiting to be reunited. Very stressful day for mom Lanie and family. Please send them good wishes!
Thank you! -Dr. JuliaTweet
Annabelle is scheduled to have her open heart surgery this Thursday to repair the two holes in her heart. I am a little anxious about it but have had lots of time to mentally prepare since we found out about her heart defect when we were 19 weeks pregnant with her. I am looking forward to the surgery being behind us. I am praying that everything goes smoothly and that she has a quick recovery. I can’t wait to see her thrive in the weeks, months, and years ahead! –Lanie
Today’s blog post is a beautiful poem written by Lanie while she was pregnant with baby Annabelle.
Happiness is a choice, a state of mind,
Rarely is it the end of the journey or the imaginary place that we searched so long to find.
Only through challenges can we develop our strengths,
Regardless of our initial reactions or what others may think.
So whenever you are sad or feeling alone,
Know that soon, you will have a baby girl to hold.
To take to the park and smell the flowers,
To get us through challenges in future hours.
She may not arrive in the package we had planned,
But sent from above to join our clan.
She will come with a new set of love and features,
But soon we’ll discover that she is one darling creature.
What we thought we had lost, was never really there,
She was meant to be, special, and sent for us to provide care.
As a daughter, granddaughter, sister, and niece,
Little Miss Annabelle will have lots to teach.
Will she teach us a new way to love or a new language of compassion,
One that is free from judgments and worries, in her own unique fashion?
A glimpse of heaven in its purest form,
A baby, a child, will soon be born.
What we once thought we were missing is now so much more,
Discovering what we have to give, isn’t that what life is for?
I’m really excited to announce a new blog category that I think you will find inspiring. I first met Lanie during her pregnancy when she was seeking out more information on Down syndrome. Since Annabelle’s birth, Lanie and I have become good friends during our many hours chatting on the phone about Down syndrome, ways for Lanie to easily maximize Annabelle’s development, all the emotional stuff that comes with the diagnosis, and how to incorporate therapy/medical appointments/learning about Down syndrome into daily life while maintaining normalcy and taking care of mom, too! Whew- those first few months can be overwhelming.
I have been extremely impressed with Lanie’s positive, energetic, motivated, “go-getter” attitude. She is totally in love with Annabelle and eager to do everything she can for Annabelle and her future. There is no doubt in my mind that Lanie and Annabelle are going to accomplish great things together. They truly represent The UPside.
And so instead of me UPdating you on what they are UP to – I thought it would be fun to let Lanie have an area on my blog to share her journey with you. Please welcome Lanie and Annabelle! -Dr. Julia
Hi, my name is Lanie, and I am a mother of three young children. Our youngest, Annabelle, is three months old and has Down syndrome. We found out about her extra special chromosome during our 19th week of pregnancy. A heart defect was detected on ultrasound and then an amniocentesis confirmed Trisomy 21. I spent the remainder of my pregnancy doing a lot of research and trying to prepare for our new blessing. Although I was very nervous about this new journey during my pregnancy, my anxiousness has slowly been replaced with optimism and purposefulness. Annabelle was welcomed to the world with joy and love by our family and friends weighing 6 lbs 13 oz. She does have an AV Canal heart defect that will require an operation sometime between four and six months.
I am currently working with Dr. Kinder because I want to maximize Annabelle’s potential and believe that early intervention is so important. Prior to working with Dr. Kinder, I read many books on parenting children with Down syndrome. Most of the books were overwhelming to me because it provided information on all the things that “could” happen. As a busy mother of three, I don’t want to worry about all the possible challenges that may or may not be in our future. I want to meet Annabelle where she is now and serve her needs in the present time. I am working with Dr. Kinder to make my life easier as I strive to provide Annabelle with the very best. I have learned more in the last month of working with Dr. Kinder than I have in my previous five months of independent reading and research.
This blog is a space where others can observe Annabelle’s progress as we venture on this new path in life. I hope that this will also serve as a resource for others who may be curious about the development and life of someone with Down syndrome. Annabelle is super sweet… Enjoy!