The Missing Piece to Our Puzzle

Sometimes I get the feeling people who don't know Preston feel sorry for our family once finding out that he has Down Syndrome.  I have gotten the oh I am so sorry, you poor people look on more then one occasion.  I probably would have been the same way a few years ago so I am not angered by this, but oh if they only knew how totally opposite it is!

I was always willing to accept any child God would bless us with, but in my heart I wanted a "typical" child.  You know the easy way!  I did not know any other way. However, now I do and oh let me tell you so far this has been one incredible journey.  Sure there are days where his medical issues make me want to scream, but past that, this diagnosis of Down Syndrome that I so feared has been our families greatest gift.

It feels like I am in a secret exclusive club, one that only an elite few are invited to join.  It is like we know a secret, a hidden joy.  I can now look into the eyes of another parent who has been blessed with this gift and have an instant bond, an understanding on what an awesome gift we both have been given.  Sure there are some challenges along the way, but the reward makes it all worth it.  It is the journey of a lifetime and lucky for us we are just at the beginning of ours.  We have so much more that is to come.

I really wish I had the words to describe how complete Preston makes our lives.  I know anyone who actually knows him and has seen his pictures can see how infectious his smiles are.  He is such an uplifting little soul.  Truly he gives life a greater meaning.  I hear all the time on how just one picture of him can turn anyones day around.  He really is a unique blessing to everyone.

I had so many fears when finding out about his diagnosis.  I slowly see each one melting away as I watch in awe at how much this one little dude can make such an impact on all who he comes in contact with.

One of the biggest fears I had was what kind of relationship Kierstin would have with her brother.  I now see them together and it is simply amazing to watch them interact.  The love between them is so obvious.  He lights up when he sees her.  She can get reactions out of him that nobody else can.  It goes both ways, she loves him to pieces.  She is so protective of him and can't stop hugging him.  He will hug her and laughs with joy.  It is the most wonderful sight to this once worried mommy's eyes.  Their sibling relationship is going to be stronger than any I could have imagined.

He truly and totally completes us!  We love this world he is showing us.  The days are brighter and life is sweeter all because of all the mommies and daddies in the world, God chose us!

A Real Balancing Act...

I have not written in forever!  We have been spending quite a bit of time in hospitals and when you get back home it just takes a while to get back in the swing of things.  So far since his surgery on February 12th (which was a hospitalization of 9 days) we have been in the hospital 5 times after that!  I kind of miss that colostomy bag at times. Never thought I would say that!  We have had to do some not so pleasant medical procedures at home as well as in the hospital but are seeing a light at the end of that tunnel finally.  He still poops about 15 times a day which makes for one sore tooshy and one enormous diaper bill :) and on and off we will have some projectile vomit and have to take cover.  However, Preston still proves to be one awesome little dude!

In other news, in spite of the hospital visits Preston is growing and reaching so many of his milestones.  He started Speech Therapy twice a week and is improving so much.  He also still has Occupational Therapy and Physical Therapy once a week.  He is sitting up so well, clapping his hands, starting to wave and just getting stronger!  In spite of a rough year, he continues to amaze us with his smile and wonderful attitude.  He is spectacular!

So many wonder why at almost 15 months of age why he is not crawling, standing or walking yet.  Legitimate questions.  People with Down Syndrome tend to have low muscle tone (plus he has had 3 surgeries that puts him a bit behind too).  This does not mean they will never accomplish these tasks, it just takes them a bit longer sometimes.  It took him what seemed like forever to hold his head up, but we were patient and worked on it everyday and now that little head is constantly looking to see what is going on (mainly searching for his sister).  Same with sitting up, he was about 12 months when he got really good at that, but now he has it and hardly ever loses his balance.  He is a complete rockstar.

So yes, he will crawl, walk and run.  It may be in a month or in a few years.  I have no idea when, but it will happen all when he is ready and we will cheer like he just won an Olympic Gold Medal!  Patience is key when you have a child with Special Needs.  I am working on that everyday.  I like to plan things out and waiting is so not my thing, but I am trying!

Down Syndrome has taught us so much, not only about Preston, but about ourselves.  Who knew we could be so strong for him.  Even sometimes when I feel like I could not possibly take another hospitalization or bit of bad news I somehow muddle through.  I have been telling everyone lately "Well they say God does not give you more than you can handle so I am thinking he must think very highly of me!"  I hope this is true, but all joking aside no matter what is thrown at us, I just look into this cute little face and just know all is going to be ok!

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!