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Isabelle’s Journey

She will do things

Bentley family

We found out Isabelle might have Down syndrome when we went in for our 12 week doctor’s appointment and it was recommended I have a blood test. The results took 3 weeks and the wait was excruciating.

A few days after we got the diagnosis, I had an amnio to confirm because we needed to KNOW so we could prepare. [Later, when we went in for our anatomy scan, we found out Izzie had a complete AV canal defect, might have a club foot (she didn't) and might have ventricuolomegaly (she doesn't).]
 

Isabelle We contacted MDSC who set us up with First Call Program Parents Ann and Terry  Iandiorio. They were awesome. We emailed back and forth for awhile and we chatted with them on the phone for about an hour. They answered all of our questions without judgement and we felt comfortable asking them really tough questions.
 

We were so incredibly scared for what this could mean for us and our son and future daughter and honestly a lot of our questions had to do with things WAY in the future like group homes etc... They [Ann and Terry] tried to get us to focus on the near future.
 

What really helped me was going to meet them at their home. I thought I would cry the entire time (hormones and being overwhelmed) but instead we got to see how amazing Ellie is. They had the same fears we had and they had the same thoughts we did and so it was nice to hear directly from someone who had once been in our shoes.
 

Also, meeting at MDSC for the New Family Social was great because we got to see kids with DS of all ages and all abilities. Ann came with us to that and it was awesome having someone there that we knew. I will admit some of it was a little scary at first ... but over our time with MDSC events and fb groups, we've learned that yeah, Isabelle will likely not do things "on time" but she WILL do them. And it was just so reassuring to see that.
 

Also, in that group we were able to meet kids who had had heart surgery and see how amazing they were doing and that took a lot of fear away. Some of the kids had the same surgeon Izzie would have.

 

The instant she was born and I saw her, I knew everything was going to be ok. She has been the easiest baby. She almost never cries. She's super happy. She and her brother love each other beyond words. She's a joy and I can't wait for all the things she will teach us over the years and MDSC will be right there with us.

 

The MDSC and Morning Travelers have been indispensable when it comes to advice - everything from which hospitals and doctors to see to how to get Izzie on MassHealth. We were rejected from MassHealth twice because they said she didn't have a disability even though the initial application had a letter from her doctor stating she has T21 and therefore is eligible automatically. But everyone with the MDSC and Morning Travelers kept helping us and telling us how exactly to fight and who exactly to call.  We are also really lucky that Kathy & Neal Lyons are in my district and been a huge help to us too. The conference we went to was incredibly helpful and informative. Also, MDSC helped get us set up with the new UMass Medical Center DS clinic in Worcester.

 

Scott & I have always helped those who help us. Our son was born 13 weeks early and we raised money for the NICU that saved his life. And after all the MDSC has done for us (even the gift card!) - it's now our turn to help MDSC. What we went through was scary but it would've been a whole lot scarier if we had to go through it alone. We just participated in our first MDSC Buddy Walk in Westborough and it was amazing to see the outpouring from the community. Scott has always been a HUGE Bruins (and hockey, in general) fan so when we found out that MDSC partners with the Bruins, it seemed like a match made in heaven. Scott can’t wait to play on the MDSC All Stars against the Bruins alumni team on Nov. 20.

 

We've kept a blog of everything we've been through since she was born - day by day - here: http://isabellebentley.blogspot.com/

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