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!
You are truly amazing and I have to agree with you. God only gives you what you can handle. He has amazing plans for us weather we like it or not. He teaches us some many things about our selves.
ReplyDeleteI have a child with a congenital heart disease (tetralogy of fallot). Never even heard of it let alone how to deal with what was to come of it,but I've realized that not every baby is healthy and that it is not the end of world. It has taught me many things about life. I love children and children with special needs touch my heart the most. I have such compassion for them, they are truly a blessing in so many ways. My son is going to be having his second open heart surgery next week and we are so nervous but thankful for the medical staff that will be doing the surgery I definitely trust them with my son's life. My son is 6 years old and had his first surgery when he was a few months old. He has come so far and I am glad God thought I was good enough to have him and take care of him.
God bless you and your little boy he is so amazing and I can't get over how beautiful he is. I will continue praying for you and your family.
Thank you so much! You certainly do become a medical professional on your child's condition. I will be keeping your sweet boy in my prayers. He is the 5th child I have heard of going in for surgery next week....lets hope all those surgeons have some miraculous stories to tell after next week!
ReplyDeleteChildren with Downs definitely change your life. We have been blessed with one also but have been very fortunate that he does not have a lot of health issues. He was born with 2 holes in his heart but they healed on his own. We have had our tonsils and adenoids out but alas he is still a strep carrier.
ReplyDeleteThere is never a dull moment but keep the faith. My little boy is now in 1st grade and is main streamed in to regular classes.
There are times I feel that I was only given what I could handle and then there are times where I wish I had a "normal" child.
I wish you and your family the best of luck with all of your medical issues. It sounds as though he couldn't have been born in to a better family.
Heather, thank you so much! So glad your sweet boy is doing so well in school! He sounds amazing! I am sure he is an inspiration to all who are lucky enough to meet him :)
ReplyDelete