Monday, November 11, 2013

The Schlueter Family Story~Part 4

On Vollen's first birthday I reflected over that past year and wrote about all my feelings about him.
Earth Day! There couldn’t be a more PERFECT holiday to mark the birth of a new life, new growth, change, and opportunity for such a unique soul. I am so thankful that the universe chose that day to bring my baby boy into my life.

I remember the specific second my life changed after my doctor told me that they believe my baby had Down syndrome. I thought to myself MY LIFE JUST CHANGED, forever. Surreal doesn’t even come close to describing how it all felt. It truly felt like a dream, a foggy, dream that I would wake up from the next day. I think I was in shock. My brand new ‘baby’ balloon deflated knowing all of the work and challenges that lie ahead. But also at the same time I couldn’t have loved Vollen any more than at that exact moment. My heart felt sorry for my little baby, like there was no one else to love him (even though that couldn’t be farther from reality), but me and I just wanted to pour my love onto him and never let him go. I felt like no one would love him like I would.

One thing I felt that was strange is I NEVER cried that entire night until the very last visitor left and it was just Vernon and I starring at each other thinking about what lie ahead. It was at that moment that Vernon was my rock. I have talked about this before, but he was so optimistic saying that there are worse things that he could have and that we would have to deal with and that we would get through anything, etc… That made me feel so much better about everything. It made me feel like, yeah, we can do this, we can do this together and be there for each other and raise this little boy, this child we created to the best of our ability and how lucky he is to have us and all of the people that love him so much.

My little guy is as unique as his own name, which at first I was honestly disappointed we used that name for him, because that first night when there were so many unknowns as to if he would even make it, we didn’t know if he had any heart problems and everything going on with his oxygen levels and so forth, we discussed that if he didn’t make it and we had another baby boy that we would name him after his brother so we could use the name, but by the grace of God we didn’t not have to deal with any of that and I couldn’t be more proud that Vollen has the name he does. He has shown me that his name couldn’t have been a more exact fit for such a special soul.

The visions of my all star, sports star, captain, homecoming king, ‘Utero Vollen’ were disappearing. Over this last year he has shown me he IS going to be my all-star, sports star, captain, leader and even a strong possibility of being homecoming king (like his father) with his heart clenching smile and squinty, crescent shaped eye charm, with such a warm and snuggly personality that is definitely a possibility. He will win over the hearts of everyone he meets. My vision for him is changing the way young people (his peers) perceive people with disabilities, showing them that they really are MORE ALIKE THAN DIFFERENT, that they can be friends and see that he can do everything they can do and is fun to hang out with and is funny and a jokester just like everyone else. I underestimated the potential of my little guy and he will do everything in his power to prove to me that he is capable of anything he puts his mind to.

He has blown everything I had thought and expected from him out of the water. He has amazed not only me, but made every one of his therapists drop their jaws in amazement. He has broken the Down syndrome mold, that is for sure.

Sometimes I feel guilty that he is doing so well. I know I shouldn’t have those thoughts because that is just who he is and how he was designed and the genetics that he was given. I should be thankful and I should celebrate his accomplishments and not feel guilty. It is hard though when he is doing so many more advanced things than the typical baby with Down syndrome. He is so close to a typical child, that it’s hard for me to see him as anything but a typical child. I treat him that way, I look at him that way. I hardly ever look at him and think oh yeah, he does have Down syndrome. I am bursting with pride that I have to suppress, I feel sometimes like I don’t fit with either group, the typical children or the Down syndrome group and I am afraid that is maybe how he will feel when he grows up.

 My son has taught me so much in his few short years of life so far. I didn't know so many things about myself. It definitely made me grow as a person. I am able to go up to strangers and talk with them and introduce myself and invite them into our Down syndrome group. I became the Parent Outreach Chair on the board of directors for the Down Syndrome Alliance of the Midlands as well as the head of the mom's group and lead meetings every month. 

I NEVER knew ANYONE with Down syndrome before my son was born. I was scared to death of talking with older people with Down syndrome. I didn't know what to say to them or how to treat them. I have learned to be more accepting to others and see them for the PEOPLE they are, not just a person with special needs. Do I still get uncomfortable? YES! But, it gets easier and easier the more I interact with them and get to know them. I knew it would be a lot of work and it is, but it's my son. I would do anything for him. 

There was a lot of therapies when he was younger and visits to specialist to make sure everything was still good. We got through it and we don't really have any more appointments than a typical child has. It does take him longer to do things that typical 4 year olds can do, but it will come eventually. In some things he is really not that far behind and in others he is pretty far behind. Each person is unique and will do things at their own pace. It has helped me to just take it slower and know that things will come and trust that he will 'get it' eventually.

 He is so very smart in so many ways. He knows exactly what we tell him, even if he has limited language right now. He can figure things out, is very clever and even can be ornery. His siblings and him fight just like typical brothers and sisters. He gets the same consequences as my other kids and I have the same expectations for him as I do for my other kids. I don't "baby" him at all. I know I said it before, but I just see him as my kid. I don't see Down syndrome and 98% of the time I forget, it's just not important. He does everything we do as a family and we treat him no different. It's hard to explain everything unless you know someone personally with Down syndrome and see for yourself that they are just like everyone else. I hope I was able to give you an idea about what it is like to have a child with Down syndrome. I would love to answer ANY questions anyone has. I am very open and I will be very honest with you. Don't hesitate to ask me anything. Please feel free to e-mail me if you would like:

and this unspeakable gift of motherhood... it's an honor. a dream. and not documenting it...capturing every moment...bottling it up to save forever...would be irresponsible. ~ Kelle Hampton

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