Meet Travis and Abby

“Down syndrome isn’t a burden. How people react to it is.” – Stephanie Holland Ready to learn something new? Welcome to Conversations about Down Syndrome 101! Even the closest family members have been unsure how to bring up Down syndrome or what to ask.   AND THAT IS OKAY! Honestly, language is a big deal to me. Words can either create barriers and promote stereotypes, or words can put people first and show respect. Theo is much more than a label, and I know you all agree. So here is my break down of how to have a conversation about Down syndrome with me. Tip 1: It is important to put a person before a diagnosis. Example: You don’t say: “I have a cancer brother.” You say: “I have a brother with cancer.” So DON’T say: “He is a Downs baby.” Please say: “He is a baby with Down syndrome.” Tip 2: It is important to understand (and use the language) that a person is not the diagnosis. Example: You don’t say: “My brother is cancer.” You say: “My brother has cancer.” ...

Merry Christmas for Travis, Abby and Theo I would love to share a reflection on our past year. We have so much love for each other. We have built a family in the roughest circumstances. We respect, love, and fight for each other's potential, ambition, and happiness.  Theo What a life he has had! Let's throw in a few stats.  Current diagnosis: Down syndrome, Repaired AV Canal defect, hypothyroidism, tracheomalacia, acid reflux 62 outpatient visits to 22 different specialists 18 pediatrician visits 6 inpatient hospital admissions (due to breathing and feeding problems, seizures, heart surgery, blood clot in leg artery from central line placement, sternum surgery, and moderate dehydration from viruses) 53 days total in the hospital 2 surgeries (open heart surgery and sternum repair) He went from 0 percentile for weight before heart surgery, to now over the 40th percentile (20.2 lbs) He went from 0 percentile for height, and is now at 0.18 percent...

I have been thinking and studying the story of Martha since it was discussed in Relief Society this past Sunday. The story is only in the book of Luke (Luke 10:38-42). 38 Now it came to pass, as they went, that he entered into a certain village: and a certain woman named Martha received him into her house. 39 And she had a sister called Mary, which also sat at Jesus’ feet, and heard his word. 40 But Martha was cumbered about much serving, and came to him, and said, Lord, dost thou not care that my sister hath left me to serve alone? bid her therefore that she help me. 41 And Jesus answered and said unto her, Martha, Martha, thou art careful and troubled about many things: 42 But one thing is needful: and Mary hath chosen that good part, which shall not be taken away from her. In my past experiences with this story, I always thought that Jesus was teaching Martha of His importance. He is the priority and we need to focus on Jesus always. In the past few days, I made a de...

Life has been really great lately! Theo's health is improving and he is learning new things! I have been able to start thinking of more than just the daily tasks and reflecting over the past little while. So here are a few things about my role as a caregiver that I would like to share. Just over 3 years ago, I was preparing to move to NYC. I had my apartment deposit and first month's rent paid. I already enrolled in my classes to attend Teachers College Columbia University to receive a Masters in International Education Development with an emphasis on Policy Analysis (my dream!). I had my scholarships, money saved, and student loan in place. I felt ready to take on the world! I was ready to be the person I always wanted to be, travel to developing countries and advocate for quality education for all. Well, Travis and I starting to become more than friends, but it was just for the summer. As we got more serious, and we realized how perfect we were ...

21 days. 21 days. Living in the hospital. I have gone home 3 times- once for sleep, twice for laundry. They say we will probably go home tomorrow, but they said that last week too. I'm frustrated. I'm angry. I'm uncomfortable. I miss carpet. I miss walking around without shoes on. I miss pumping milk for Theo without someone coming in the room. I miss having a conversation with Travis without being interrupted. I miss making Theo's bottle without nurses needing to double check it and make notes in their chart. I miss changing his diaper without having to weigh it. I miss singing to him without the nurses commenting how cute it is. I miss snuggling with him on the couch. I miss my bed. I miss making my own breakfast, lunch and dinner. I miss having different outfits to choose to wear. I miss our home. I miss a conversation on the phone without losing connection. I miss reading a book or watching a movie without several interruptions. I miss sleep. I miss having a life o...

This is the third time Theo has been admitted to the hospital - he is only three months old. This time he was scheduled for a broncoscopy, ear exam, and echocardiogram. We were supposed to leave after a few hours, but he is not recovering from the sedation well and needs oxygen. Hence day 2 in room 28 on the 10th floor of NCH. The beeping is insesant. The nurses are passive. The crib sheets are scratchy and have blood stains from Theo's blood labs (change them already!). Theo has a hospital gown that could fit three of him inside it. I don't even know what questions to ask at this point. I am frustrated. I. Am. Done. I am done with the nurses coming in to check on the destats and say to Theo, "What are you doing bud?!" ... my thoughts are My perfect baby is breathing the best he can . He isn't doing anything wrong . Then they stare at him,  stare at the machine, pause the alarm,  then leave... only to have it go off again in 1 minute. Then they say,  "What ...