Happy Birthday Preston - Our Gift

Today my sweet Preston turns ONE!  It takes me back to a year ago.  My husband and I made the 2 hour drive to Buffalo, NY to have our boy.  We were told we had a 90% chance of him having Down Syndrome and knew that he would have an immediate need for surgery in his first 24 hours of life. 

 We were prepared, yet unprepared.  How does one prepare themselves for having your infant child swept away from you and then sending them off to a 3 hour long surgery exactly?  How does one deal with the possibility that the child you were carrying would not have the life you had been planning for him all along?  I am ashamed to say I wished it away.  I prayed to God to give me a healthy baby boy.  A boy who was “normal”.  I was afraid of what exactly Down Syndrome meant for him.  I was afraid of the extra work it would entail; I feared the hurdles we would face.   

Looking back just one year later I am ashamed of how that woman acted.  Why would she fear Down Syndrome?  He is perfect, he is normal, he is the child God meant for me to have and he is wonderful and amazing!  I would not change him.  He may require more doctors’ visits, more work, more love, more attention, but the gift he gives is so much greater than that.  He gives us love, appreciation for the small triumphs in life; he makes us happy, we are better off for having him in our lives.  Everyone he meets leaves with a smile on their face.  Even on his worst day, he shows us how strong and wonderful he is. 

God somehow looked down on us, who are so undeserving, and blessed our family with Preston.  Our fear has been replaced with such joy and love.  Our sorrow over the loss of the child we thought we were going to have has vanished.  We have an even greater gift.  We have a boy who is going to love us unconditionally.  We have a boy who is going to show us what life is really all about.  We are going to learn to live for today.  We will relish in the small victories and cherish every second of this amazing life!  

 He is going through life at his own pace.  He will sit up when he is good and ready to, he will crawl when he feels like it, he will take his first steps when we least expect it.  We will clap, we will rejoice and smother him with kisses!  He will be the best little brother, the sweetest most precious son, a cousin who you can always turn to, a nephew who will fill your heart with love, a grandson who makes your heart swell with happiness.  He will be a friend to many and an inspiration to all! 

We will enjoy life at Preston’s pace.  We will become better people.  We will learn so much from him.  Our hope is to help others who have the same fears that we once had.  Those fears for us have disappeared. 

Happy Birthday Preston!  It has been quite the first year and we are so excited for the many more years we get to spend loving you!

Happy World Down Syndrome Day!

Happy World Down Syndrome Day!!!  Today is not only about awareness for people with DS but also acceptance!  We are all more alike then we are different.  

Check out the sweet video Daddy made in Preston's honor for World Down Syndrome Day!

Life's Choices

Eric and I have had a lot of people tell us they admire how positive we have remained through all of Preston's health issues and finding out about him having Downs Syndrome.   My response is always this,"What other choice do I have?"

The way I look at it is this....I have two choices.  1. would be to curl up in a ball, feel sorry and have a little pity party for myself.  We could sit around and morn over the loss of the child we though we were going to have.  All this does not change a thing and I am going to miss out on so much.  Option 2.  Smile, make the best out of whatever is thrown my way and try to help other people who go through a similar situation.  In the process I get to enjoy the wonderful baby God blessed our family with and not miss a minute of his inspirational life!  

Option 2 makes me feel like I am in control.  I am not letting little things weigh me down.  We just take things one day at a time and if it does not go as planned we deal with it and move forward.

What good is wallowing in self pity going to do for Preston?  What good is it going to do for anyone really?  Preston is the hero here.  He goes through so much yet, you know he always has a smile on his face.  He deserves a smile back!  He deserves to be admired.  We are just along for his awesome ride!  

If we spend our whole life dwelling on the what could have been we miss the miraculous things happening right in front of us!

So next time your car breaks down or you have a bad day at work or things just don't go the way you planned think about this.....you have two choices, which one are you going to take?

Lessons Learned From A Baby Boy

It has been quite a couple of weeks!!!  Preston had his pull through /colostomy reversal surgery for hirschbrung's disease.  It has been looming over us since he was a few weeks old.  Such an intense and long surgery (6 hours) for a little dude and he did great!  So scary sending him in, but he came through it like a champ, as he always does.  How does someone so little contain so much strength?  Does it make sense that the strongest person I know is my almost 11 month old son?  He had to be in such intense pain afterwards, but he hardly complained.  He went days without eating and has the worst case of diaper rash (because he never used his hinee before).  Yet he still was/is in good spirits.

That boy amazes me every day.  He teaches us so much about what life is about.  Don't sweat the small stuff!  Think about some of the things you fret over every day.....is it worth the worry?  Things have a way of working out, don't spend your life worrying about things that are so out of your control.  Preston has been through so much in his short life, yet he still has a sweet smile on his face.  A smile that melts my heart and makes me love and admire him even more.

Preston makes me feel like anything is possible.  A year ago I was a blubbering mess, thinking about how sorry I felt for myself that my baby may be born with Down's Syndrome and would need a surgery hours after birth, now here I am after his 3rd surgery and am so different.  Well for one I am not nearly as hormonal as I was then, but I have a new confidence, I know he is in God's hand and will be ok!  I handle all this so much better than the woman from a year ago did.  Preston has passed along a bit of his strength to his mommy and daddy.  If our sweet boy can go through all that he has and still be our sweet happy baby, we can control ourselves and trust the Lord that he will take care of him.

Preston is such a tough little dude.  He can teach us all something about life.  The next time a situation arises and you think you do not have the strength to handle it, think of Preston and know if he can overcome all that he has so can you!

Sibling Bonds

I love the bond my children share.  They love each other, I can so tell.  Preston loves watching his sister and always has a smile for her.   Kirstin is Preston's biggest cheerleader.  She gets so excited when he accomplishes something that has been a challenge for him.  She gets so eager to feed him something new.  If he laughs at something she does she is cracking up right along with him.  She loves helping with him.  She is game to do whatever we need her to do to help.  I mean what other 5 year old would go empty a syringe filled with baby poo into the toilet for you?

Preston will need a lot of love and support as he grows and he has the perfect sister for the job!   She has such a sweet heart and is so compassionate.  I love watching them together.  That was such a big fear for me.  What was their relationship going to be like?  How would DS affect that?  So far not at all!  She will be holding him smiling then he pulls her hair and she is screaming....such a typical little brother.  It is just like I thought it would be prior to us finding out about him having Downs Syndrome. I am sure they will fight just like I thought they would, they will have special secrets, inside jokes and a bond like no other.  

Preston is one lucky little boy, he has the best sister for him.  Nobody better mess with her brother!  That passionate attitude she has is going to make her a force to be reckoned with.  She is going to be such an advocate for him.  She has already informed me that she plans on being a doctor (and a princess and a firefighter).  

One day she said, out of the blue, "I wish I had Downs Syndrome like Preston".  She was just so matter of fact, I asked why and she just thought it would be fun.   I agree!  Preston is always is having a good time, he does this little fake laugh at everything!  Every other person I meet with DS also looks like they are so happy!  While others are walking around with a scowl on their face look at the face of a person with DS....I guarantee you will be smiling right along with them!  Do yourself a favor and go talk to someone with DS....tell me they are not the happiest person you have ever met!

She loves that little boy just as much as we do.  I can not stress enough.....God really knows what he is doing.  We all just need to learn to trust him more, sit back, and enjoy this journey!  It is going to be so much better than anything we ever expected for our lives!

Times are Changing

Did you ever hear the term "God will not give you more than you can handle"?  I am finding out more and more how true that is.  Not only does he not give you more than you can handle, he somehow fills you with a strength you never thought you had.

I am a lot of things, but someone who handles change well is not one of them.  I don't like things to be different.  I like a schedule, I love organization, I want to plan my week out and I want to stick to that plan.  Having Kierstin, I learned that she was in charge of our plans and I had to be accommodating to her needs.  I think that was God begining to prepare me for the next chapter in our lives because Preston has been a whole other ball game!  Not that he is hard to care for, it is a joy to be able to do things for him.  It is just different and a big change!

We have to work for things a little harder with him.  Learning to drink a bottle took what seemed like forever, we had to schedule our days around that bottle for the longest time and felt so much pressure to get him to finish it.  If he did not finish it we had to put it through his feeding tube.  Every time I had to dump milk down that tube I felt like I was failing.  Then one day it just clicked for him and we have not had to use the feeding tube since. (Except for medicine, because no baby wants to eat that!)

Eating food was a challenge as well, way more got thrusted out of his mouth by his tongue than what got inside, but now he is like a famished little bird.  Apparently a large challenge of babies with Downs Syndrome is eating, one of the reasons that they tend to grow a little slower than an "average" baby.  Patience is something we are getting really good at around here!

So much has occurred over the past 10 months, I am a different person for sure.  Me, who could not even receive a flu shot now cares for a protruding bowel out of the side of my baby.  I can slap on a colostomy bag in just a few minutes and it can last up to 3 days (really good if you consider the 1 hour we were getting at first).  I know how to work a G-tube.  I clean up projectile baby vomit like nobodys business!  I have had a baby go into the OR 3 times and he has had 2 surgeries and I cried like a baby, but I got through it!  I am amazing myself!

I was use to the cushie life, nothing really drastic or out of the norm happened to me, but now I have been thrown out of my comfort zone and I survived!  Having a child with Down's Syndrome or any other condition for that matter is not the end of the world!  It just opens your eyes to a whole new world, a world where you can amaze yourself at how much you are capable of doing.  It is a world where you have a chance to become a better version of yourself!  If anyone out there ever reads this and finds out that their baby is going to have DS, please don't be upset or worried.  It might not be the child you were expecting to have, but it is the child God wants you to have and that is so much better!

Value in the Unvalued

We live in such a disposable society.  If something breaks we throw it away, we easily grow tired of things and just discard them.  If it is not shiny and new nobody wants it.  People give up on marriage so easily because it is so easy to give up and quit.  Nobody wants to put effort into making things work.  That or they just don't see the value in it.  A small blemish in the packaging will cause us to walk away from an item.   Old and reliable has been thrown to the wayside.

The more statistics I hear about pregnancies that have an early diagnosis of Downs Syndrome the more disgusted I am.  The world makes it so easy for women just to "give up" on their baby because it is not going to be what they expect.  I hear of doctors actually trying to talk women into aborting their child with Downs Syndrome.  I heard one story of a doctor yelling at a mother of a newborn with DS who chose not to have prenatal screening done saying she was irresponsible to bring that child into the world!

What is it that makes people think that there is no value to these lives?  Why does the world view a person with Downs Syndrome as less of a person than someone who does not?  Lack of education maybe?  If it is not easy it has no value?  I just don't understand.  Just because a person comes in a package that looks a little different then average does not make them less loved by God.  Just because it takes them longer to catch on to something does not mean that they can not contribute to the world or make a difference to someone.  It frustrates me and for the life of me I can not figure out how someone can feel this way!

Maybe they just don't know anyone with DS.  Perhaps they shield themselves from anything different because they are scared and it is easier to avoid the person then it is to learn about them.  I will tell you in my 10 months with Preston, anyone who looks at him and takes the time to come see him will walk away with a smile on their face.  I have never seen anything like it.  He has such charisma!  It is unreal, people I do not even know want to see him, they want to be involved with him, he makes anyone who meets him happy.  He changes them just a little.

I am not sure what God has planed for this little baby, but I am telling you it is going to be amazing!  I felt this way ever since I found out that he could possibly have DS.  I am not sure how to explain it without everyone thinking I am a total nut, but God just makes me feel like this child is destined for something great.  He is amazing and has changed all of our lives.

I am so glad that my own personal beliefs do not allow me to devalue a life God has placed in this world.  God does not make mistakes and for some reason, despite all of our faults,  he has trusted Eric and I with this precious life.  How exciting is that!