First up is one of our fearless leaders of the Cincinnati Eastside Mom's group, Tika. I sent her a list of questions and here is her story:
First Name: Tika
Children: Leightyn (3) (Ds) and Bayli (9 months)
Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)?
I work from home (or the pool, zoo, aquarium, or wherever else me and the kids might be) doing the filing, paperwork, and answering the phones for our online business. I also serve on the Board of Directors at the DSAGC and head the Eastside Playgroup.
How many years have you been involved with the Eastside or Extrordinary Friends Mom’s group?
I begged Martha (our Early Matters Coordinator for the DSAGC) to start the Eastside group after moving here from Columbus in 2009. We had a Mom’s dinner group there and a small group that met once a month with speakers and socials for the families. We did not have any other family or friends here locally so this is something I really wanted for us. Melissa Skavlem and I started the group in 2010 and our first meeting was in Feb. of that year! Over two years later and we are still going strong. This group is my baby and I could not be prouder of what it has grown to be.
Why you like being a part of this group?
All of the best information I have ever been given about Down syndrome has come from other families! Now that we are almost 4 years (hard to believe my baby will be 4!!) into this journey I love being able to share what I have learned with the families who have just started their journey. Like I mentioned we do not have family in town and this group has become my family. We have made many life long friends by being a part of this group.
Best advice for new parents of a child with T21:
BREATHE!!!! The most important thing you can do for your new baby is love them, everything else will come in time. The future can be scary even in the best of circumstances but especially when you have a baby with special needs. Just focus on today and live in this moment! You will soon see that you are stronger than you ever knew you could be. Your child will teach you so much more than you can ever teach them so just hang on and enjoy the ride; the ups, the downs, and all the in betweens!
Greatest joy in having a child with T21:
The amazing connection that you have with other families who have a child with Ds. There is something about that extra chromosome that allows us to make an instant connection and fosters the beginning of lifelong friendships. Leightyn is the light of my life and has taught me to celebrate every accomplishment and to live in the moment! If the world could only see things through Leightyn’s eyes it would be a much better place. She greets EVERYONE with a smile, wave, and usually a hug too! Her hugs are the best thing in this entire world!!!
What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?
It is easy to feel like you are not doing enough for your child. With all of the doctors, appointments, therapy, etc. we can all get overwhelmed at times. What your child needs most is your love and if you are giving them that then they will be just fine. Your child will reach their milestones when they are good and ready and not a second sooner so try not to put pressure on them or yourselves. That sweet moment will come in time so sit back and wait (I know easier said then done) and be ready to clap, scream, hug, kiss, and even cry when the moment comes!
The best tip I have when it comes the therapy is to make it fun and try to incorporate it into your everyday routine. I am NOT saying make a point to have therapy every day, that would get exhausting, but remember that things you already do can be therapy too J For example we had a picnic lunch it the fort yesterday. Climbing the stairs to get in was physical therapy. Signing and saying the colors of the different items we were eating was speech therapy. Using her utensils to cut things up and eat, drinking from a straw, and then cleaning up and putting things back into our bag was occupational therapy. All three therapies in one thirty minute lunch! Use your child’s interests to make therapy personalized and more fun for them. If they like Mickey Mouse use that as a tool. It can be a reward or a motivator.
If you could see 24 hours into the future what would you do with this ability? I would make sure that I actually shower, wear something other than sweats, and put on a little makeup when I knew I would be seeing someone I know while out running errands LOL! Knowing what numbers to play in the loto would be nice too. Money cant buy happiness but it can buy clothes, shoes, and hair bows which can get expensive when you have two little girls J
Tell Me About Your Diagnosis:
We chose not to do any prenatal testing. All of my ultrasounds and routine screenings never indicated that anything was a concern with our baby. I had an easy pregnancy and labor. When Leightyn was born she was not breathing and the room quickly filled up with hospital staff as they began to work on her. I heard one of the nurses ask another doctor, “Are you thinking what I am thinking?” to which they replied “Yes.” All I could think was that they thought my baby was going to die or that she was already dead. Down syndrome was not even a thought. After what seemed like eternity, although really only minutes, she was crying and breathing on her own. The nurse came over to me and told me that they thought our baby might have Down syndrome based on some of the physical characteristics they were seeing. When they handed her to me, I knew she did, although that would not be confirmed for several days. I fell in love with her and instantly felt the need to protect her. This momma bear was born that day as well. She spent her first few hours in the room with me but it soon became apparent that her heart might be a concern and she was taken to the NICU. An echo two days later confirmed their suspicions and made a Down syndrome diagnosis more likely. She had a complete unbalanced AVSD. At five days old she went into heart failure and was transferred from her birth hospital to Nationwide Childrens Hospital where she spent another week. Sometime during that stay her diagnosis was confirmed but we already “knew” although up to that time there was still a small sliver of hope that we were all wrong.
The Down syndrome diagnosis came as a shock but it was not nearly as scary as the heart defect was for me. I always say that her AVSD was a blessing in disguise when it came to the acceptance of having a child with Down syndrome. Suddenly Ds was not that scary at all and instead something we could manage. The heart defect could actually kill my baby and it almost did Down syndrome could not. It really helped me put things into perspective. Down syndrome was a part of Leightyn but it was not all of her, she was my beautiful new baby girl, and I loved her to pieces!
When I was 13 my youngest sister was born at 26 weeks but measured only 24 weeks gestation. She weighed only 1 pound and 8 ounces at birth and spent several months in the NICU. I think this was also key in me adjusting so quickly to Down syndrome. I had been in the NICU before and had seen all of the monitors, tubes, chords, etc. I also knew about Help Me Grow and therapy. I had seen my little sister have many ups and downs in her first year health wise and yet she had grown into a mostly healthy and happy child. Another reason I was able to adjust to our new normal quickly.
It also helped that Leightyn was my first born so I did not have another child to compare her to. She met her milestones on her timeline and it really wasn’t too obvious to me when she was behind as a baby. She did things when she was ready and in her own way and I didn’t know any different! The extra “work” (therapy, check ups, weekly appointments, surgery) was our normal.
This is not to say that it wasn’t hard at times, it was. I cried, I worried, and I was afraid of the future. I certainly never thought I would have a child with Down syndrome at 24, but I also never expected to have two beautiful redheaded baby girls with light colored eyes either but I did! There are still times when I cry, worry, and fear for the future, but that is what I have all of my amazing friends and family for, to support me on those days. Down syndrome is a part of our lives and we have chosen to embrace it. Today there is so much more joy and love than there is pain and fear. Everyone has a different journey and that is okay. This is a glimpse into mine!
Tika is amazing and I'm so glad to call her my friend. Surely a wonderful example for us all!
Here is Tika with her beautiful girls!