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!
Saturday, February 23, 2013
Wednesday, February 6, 2013
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!
Monday, February 4, 2013
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!
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!
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