Nov
05
2015
Sullivan is our second child. He was a planned home, water birth. An amazing, beautiful experience.
Due to his floppy tone, doctors ordered genetic testing. He does have a chromosomal abnormality. However, it is not a named syndrome. Only common abnormalities are actually named. In Sullivan’s case, he’s the only known person with his gene duplication. 96 of his genes on his X chromosome are duplicated.
Geneticists assume this is the reason for his low tone. His low tone makes it difficult for him to reach everyday physical milestones that other babies do, but he’s not giving up. Everyday, he works on rolling and learning to sit unassisted. Our goal is that he’ll be sitting by his 1st birthday.
Sullivan’s favorite activity is swinging in the backyard. He loves watching the leaves move in the breeze and watching his older brother, Jonah, swing next to him. He also loves his toes in the koi pond, watching the fish and the waterfall. He really enjoyed being sung to. ‘Old Macdonald had a farm’ is his favorite song. Daddy loves tickling him and giving him kisses. This makes him giggle.
I love Sullivan’s determination. Simple tasks that other people take for granted, may be difficult for him for a while, but he won’t let that stop him. We see improvement every week. His happy smile and chubby rolls, make him irresistible to cuddle:) He still cuddles like a newborn.
Nov
04
2015
To know Liam is to love Liam. He is a very easy going kid, and loves everyone. Liam was born with hydrocephalus which means water on the brain. He is both physically and mentally impaired, and non verbal. He laughs really easily. He loves when his doggies get to playing and when we throw the ball back and forth to each other. Anything being thrown up in the air will make him laugh as well. He is definitely not camera shy. As soon as I bring the camera out he turns into a total ham and will put on a show. Everyone who sees Liam tells us how adorable he is, not even knowing he has special needs. I love being Liam’s momma and wouldn’t trade it for the world.
I would love if people would stop asking me if he can have candy. Liam has never had candy bc he has some swallowing issues and wherever we go people always ask me if he can have it, because he looks like a normal 2 yr old. When I say no, they just give me a look like I’m a mean mom. But the truth is he wouldn’t be able to handle candy and eat it without choking.
I would tell any parent who gets the news that their child will have special needs that it is completely normal to ask WHY ME? and feel a million different emotions. BUT it is so important to always remember this is part of GODS plan and he will guide the way ALWAYS. Being a special needs parent is no easy task and the hardest part for me personally is seeing all the kids the same age excelling and walking and talking and then there is my child who is not yet. It is ok to feel sorry for yourself and it is ok to throw a pity party every once in awhile. We are all human and while we may see more trips to the hospital, and more doctors appointments, and more therapies, our children are still a gift from GOD and they deserve the same kind of love as any other child.
I have found that my longtime friends are still my friends but they don’t really understand the journey I am and because of that I have connected with other Special Needs moms and it is the best thing to ever happen. I have made so many good friends who I can go to and vent and I know they will totally understand and be able to give me the advice and comfort that I need.
I think you are truly amazing for doing this for our kids!! I hope we can bring awareness to everyone when it comes to special needs children. Parents who have “normal” children need to educate their own kids in accepting kids with special needs. People need to know our kids are not a contagious disease and just because they may look and act different they are still human beings and deserve as much acceptance and respect as the next person!
Nov
03
2015It was actually a struggle to get a picture of Jeremy when he was NOT smiling. For a photographer, that’s practically a dream situation. I felt like I was walking on clouds!
Jeremy likes listening to mama sing, Sesame Street, and lots and lots of attention. The more attention, the more smiles. This little guy is a total extroverted camera hog 🙂
Jeremy is a child with Down Syndrome. 1 in about 700 babies are affected by this genetic condition which knows no barriers for race or economics. Down Sydrome does not define who or what he will become. People affected by down syndrome have become successful actors, restaurant owners, models and just about anything they dreamed of becoming. 
Nov
02
2015
Delaney is a head strong, determined 4 year old with the sweetest smile you’ve ever seen. She loves going to school and riding the bus like a big kid. She is very active and loves jumping, wrestling, swimming, and sliding. Her poor little brother is often on the receiving end of her head locks and take downs, but he also gets the most hugs and kisses. She also loves to dance and sing! Delaney loves to watch videos on YouTube and cracks up at the funny ones. What I love best about Delaney is how truly loving she is. She’s quick to forgive, she loves to cuddle, and she loves to make others happy.
I really don’t have a problem with any questions because I would rather someone feel comfortable asking me whatever than to avoid me because they weren’t sure what to say. People usually mean well. It’s sometimes easy to forget that we weren’t always the experts we are now on this diagnosis, or people first language, etc.
I think the most important thing you can do is to get connected with other moms. You need that support system. You need people who have been there before, and also those that are going through the same stages that you are.
I hope they think, “What a beautiful little girl. Look how much her parents and brother love her. What a lucky family.”
I really appreciate when people feel comfortable asking tough questions and letting you give tough answers. I don’t want to feel like I have to sugarcoat everything, even though that would certainly be easier. Something that is really important to me is that people don’t take for granted the amount of work, time, thought, stress, etc that we put in to help Delaney be her best. I think some people just assume that she learns things at the same time or speed a typical child does. They don’t consider the hours we all put in (us, her therapists, and most of all Delaney) to achieve the same results. It really is a full time commitment, but the pay off is so amazing. I am in awe of all that Delaney has taken on and everything she has accomplished.
Nov
01
2015
Luke is all boy. He must have climbed and explored everything in the whole studio. Nothing was too great an obstacle for this little adventurer.
Luke is a child with Down Syndrome. But that doesn’t change the fact that he is a unique individual with his own needs, wants, and agenda. An agenda Luke made abundantly clear with multiple uses of the word “no” 😉
Mommy and I got quite the workout chasing this little guy around and watching him explore, but even so we managed to capture just who he was.
I love that his mama was laid back and just went with the flow. I would rather capture a child being their normal mischievous and high energy selves than to force them to do formal poses.
