My Unexpected Little Blessing

The surprise of a baby with Down syndrome – the story begins at the bottom of this page.

Baby’s 1st Christmas

on February 10, 2013

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This was positively the best holiday season I have ever had. And I absolutely LOVE the holidays. But there is nothing like seeing it through the eyes of your child. Even though Regan was only 6 months old at Christmas time, and had no idea what was going on, lol, I sure did! And I loved every second of it. Of course, she found the wrapping paper the funnest thing to play with – as we were expecting. But it was cute anyway! We had fun putting bows on her head after she opened her gifts. As you can see, she didn’t enjoy that quite as much as we did…..

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Earlier in the month we took Regan to Hope Haven. That is a clinic that specializes in children with DS. They do very thorough developmental evaluations, in which they give you strength based assessments. This place was absolutely wonderful! She had one hour with Physical Therapy (PT), one hour with Occupational Therapy (OT), one hour with Speech Therapy (ST), and an hour and a half of educational information. We learned a lot at each visit, and were happy to hear that at 6 months ( a little over actually), that our little Regan was doing very well. We have been hearing that all along, but you never get tired of it! They gave us some general suggestions of things we can do with her to keep her on track. And they suggested that we get her some PT about once every other week to help her with her rolling. She can roll, I have seen her….but she must not feel it necessary, cause she doesn’t often do it. So she will be starting that soon. I was also happy to hear that Hope Haven will help us with her IEP’s for school. An IEP is an Individualized Education Program. All children with Down syndrome will get one of these each year. It basically sets goals for each individual to achieve each school year. Children with Down syndrome are sometimes integrated in regular classrooms for some, or all, of their curriculum. But since it may take them a little longer to learn new things, they do not always have the same goals as the “typically” developing children. But each child is different, DS or not, so that is why an IEP is so great. We don’t want to place all children with DS into the same classrooms all the time, because each child will excel in different areas. And Hope Haven will help the parents with that decision – guiding us in the areas in which the child excels, and knowing where the child may need some extra help. I am so thankful for all of the wonderful programs, and services that our out there to help those of us parenting children that may need a little help along the way. I am sure that Regan is going to do great!

On another note – I started thinking back to those 6 long days that Regan was in the NICU in June, and how that was one of the scariest times of my life. So many wonderful people in my life helped us out during that time by bringing us meals at home (after I was released), coming to visit just to give us support, and just doing whatever they could so that we didn’t have to worry about any of those typical “life” responsibilities, and that we could just focus on Regan. I am so grateful for that. Receiving Regan’s diagnosis at birth was one of the hardest things to hear. And that by itself was enough to handle. I experienced so much stress, anxiety, nervousness…you name it, I felt it. (There was also a great amount of joy….as I loved my new baby girl!) Eventually the fear passed….but for that while in the NICU, I was scared.

So as Christmas was approaching I started to think about all the children that were in the hospital at this time of year. I also thought about their parents and how scared they must be for their child, and how overwhelmed they must be with everything. I imagine they were hoping to have their child home for Christmas, and for some of them, that may not be possible. So I wondered…..what can I do for these families? So I decided to make a toy donation to the local children’s hospital. It wasn’t much, but it was something. When I went to the hospital to drop off my contribution, I was amazed at the large room that was completely filled with toys donated by other individuals and businesses in the area. Even though my contribution was small…..a few children were going to be happy on Christmas because of it. And a few parents may be a little less stressed….. their child had a Christmas, even while in the hospital. Todd and I have decided that this is something we want to do every year. We probably had as much joy in our hearts as the families that benefited from the donations. Christmas really is about giving…..so that is what we did. Besides, we had the best Christmas present we could have asked for – we had Regan home with us!

In having a child with DS, we have learned that you never can know what life is going to throw at you. That 1 in 900 chance of our little girl having DS proves that. No matter how unlikely something is, it can still happen. You actually can be the “one”. I am so thankful that I was able to help some families that had to spend Christmas in an unfortunate place like the hospital. There really isn’t any preparing for something like that. And when something like that happens, and it can happen to anyone, it is nice to have others fill in so you can focus your time where it needs to be – on your family. I am learning a lot about myself on this journey. I never really thought of myself as a selfish person, but I know I am much more unselfish now than I may have been before. I have God, and a beautiful little girl with a little extra genetic material to thank for that. She really is my little miracle!

“Nothing you do for children is ever wasted.” – Garrison Keillor

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