Friday, October 05, 2018

Special Needs Spotlight || Hannah

Hello! I’m Christine, from Milford, Ohio (East of Cincinnati). Our cozy home includes my husband, Tim, daughter Nora (age 6), Hannah (age 4, who has Down syndrome), and a 60lb mutt named Ailo. Both Tim and I are full time graphic designers and love attending concerts when we aren't trying to keep up with two incredibly active girls!

Miggy: Welcome Christine! Thank you for being here today and sharing your wonderful family with us, especially your sweet Hannah. Can you take me back to the day you found out Hannah would have Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Christine: I was pregnant with Hannah in early 2013. We had our gender ultrasound the day after Mother’s Day and the technicians said they were having trouble viewing parts of Hannah’s heart and gut. We were on edge as we were referred to a local hospital’s perinatal center for a Level 2 ultrasound for a closer look. At that Level 2 ultrasound, we learned Hannah had a heart defect, blocked small intestine, and several other markers for a genetic disorder. A later blood test screen (NIPT) pointed towards a Down syndrome diagnosis.

We felt like we’d been gut-punched and the rug was pulled from under us. We truly thought our lives were set for the worst; we'd go broke, one of us would have to quit our jobs, and we wondered how it would affect our older daughter. What had we done to deserve this? I dove head-first into research and finding other families such as Heather Avis, Kelle Hampton, and Michelle of Littlest Warrior (Hannah and Eli have very similar stories!) How did families find their tribe before social media?!

Of course, none of those terrible things happened and now I think, “Down syndrome? Shoot, it’s not that big of a deal!” I know I needed to process and grieve who I thought Hannah should be, but now she’s exactly who she was meant to be which is an amazing, jubilant 4-year-old. I truly forget she even has Down syndrome most days. And our girls love each other and bicker just like two sisters would : )

Miggy: Of course every condition presents differently in different people, can you explain what Down syndrome looks like for Hannah and how it affects her and your family's day-to-day life?

Christine: Every individual with Down syndrome has their strengths and weaknesses, just like a typically-developed person. She reaches her milestones very slowly; never crawled, sat at 11 months, walked at 2 years. She's still learning to speak, not only words, but stringing multiple words together. Potty training is in process, but not complete. Cognitively, she’s similar to a two-year old. Though I will say, she definitely met the Threenager behavior on time!! Holy cow.

Our daily life now is quite average. When Hannah was first born, the appointments felt non-stop. Most children with Down syndrome have some type of Early Intervention through their county. Therapists come to your home as frequently as you'd like to help your child reach their potential; physical, occupational and speech. I felt Hannah had more complications than most kids (and some kids with Ds have no health issues!); a heart defect and a intestinal blockage which together resulted in a g-tube for two years. Then add on eyeglasses before age one and annual hearings tests--it felt relentless. The appointments eventually taper off and you just get used to the “maintenance.”

Once Hannah reached age three, Early Intervention stopped and she entered preschool. We are so grateful our local preschool is very established for kids with special needs. She now receives all therapies at school. She rides the bus to and from school at our babysitter’s house. Life feels pretty “normal” now. 
Miggy: What are the biggest worries you face for Hannah? On the flip side, what are your hopes and dreams for Hannah?

Christine: My biggest worries for Hannah are simply societal acceptance and true, genuine friendships. I want her to have the same opportunities as her typical peers; sports, clubs, jobs, etc. My hopes and dreams for Hannah are that she finds those true, lasting friendships, and that she wants to/can live independently from us. Cincinnati has proven to be an amazing, supportive community for those with Down syndrome. There are SO many families here in the Ds community and I hope we all stay tight and our kids grow up together. It’s good to have a tribe who “get it” and you can lean on.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Christine: As daunting as a g-tube sounds--and it was at first--I can laugh now at it's benefits. Hannah had a tonsillectomy earlier this year and we had to administer endless pain medicine to her--if she still had a g-tube, we wouldn't have to fight so hard to get the meds in! Also, just recently I laughed at myself for taking advantage of Hannah's small stature. She easily passed as a 3-year-old and got on a hayride for free. It probably sounds terrible, but a lot of Ds Moms are able to see the advantage of a smaller child : ) 
Miggy: How can people best approach or respond to Hannah? Is there something you wish other people knew so as to avoid awkward or hurtful situations? 

Christine: Just treat her as you would any other four year old! She may not seem like she understands you, but she always surprises us. I think one question to always avoid is “Is he/she high functioning?” Down syndrome isn’t a spectrum. Every person has his/her own strengths and weaknesses. The attributes of Down syndrome can be more or less apparent in each individual. Another tip is to not use the term “Downs” - most families in North America feel that is slang. Use person-first language; “Hannah, who happens to have Down syndrome,...” Not, “Downs’ kids.” Our kids are individuals; their diagnosis does not define them.

Miggy: Are there some ideas you once had about having a child with special needs that have since changed now that you're actually a special needs mom?

Christine: My initial thoughts were that we would cease seeing friends or enjoying life at all. Totally not true. We don't see friends because we're just a busy family with two school-aged kids (haha!). No, but we do everything any other family does. I think the only difference is looking out for my daughter’s best interest and becoming her cheerleader and advocate.
Miggy: What is the biggest lesson you’ve learned since becoming Hannah's mom?

Christine: PATIENCE, strength, acceptance and gratitude. Climbing over any diagnosis, dealing with multiple surgeries, and making sure your child is set up for success is hard and tiring. People constantly tell me “I don't know how you do it. I couldn't do what you're doing.” B.S. Yes you could--any parent will tighten their bootstraps for their child. You just forge ahead. You accept your child for who they are and you just naturally love them. There are difficult times, but the good is *really* good because your kids has to try three times harder. It's not the path any of us would have chosen, but darn it, it's a beautiful one.

Christine, I had to laugh because yes! there have been many times I've missed Lamp's g-tube over the years. It was so easy to give her medicine and to keep her hydrated when she was sick! I remember thinking, "Geeze, every baby should come with a g-tube." This line struck me, "You accept your child for who they are and you just naturally love them." It can really be as simple as that. It is the same love we offer our typical children, our family and other loved ones. Thanks for the reminder Christine. And I hope one day we run into each other! In the meantime give your beautiful girls a squeeze from me. 

As always, if you or someone you know would like to be a part of the special needs spotlight, email me at thislittlemiggy at gmail dot com. 

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