A post from Chris

Here is something Chris wrote that he asked me to post on the blog it's a bit long but worth the read.....

Hello everyone, I have no idea what I am doing so I hope this comes out right. My name is Chris and I am the father of these two beautiful children you have been watching grow up. I wanted to write this letter for two reasons. First I want to tell you about the wonderful person who runs this blog, and second I wanted to give a fathers perspective of having a child with Down syndrome. Before I begin let me say that even though my gorgeous Ella Grace has it, I still know very little about it. My wife is the one that has done research for hours on end figuring out what tests and procedures need to be done. My wife Kacey has proven time and time again that she knows more than many of the doctors and specialists she has taken Ella to see. Kacey has more courage, compassion, and drive than anyone I know. She took the struggles and emotions associated with such a difficult time and put them, heart and soul, into her blog; which has become a support network and a point of inspiration for hundreds if not thousands of people. At first I did not understand the blogging thing as a whole, and I really did not understand why Kacey spent so many hours putting it together. She has read me some of the wonderful comments that you have all posted and I am truly amazed at what she has compiled to show off of our precious gifts. Now that I know how important it is for Kacey to help others, I am so thankful that she has had a way of channeling her thoughts.

Ok, on with the story.

I must make a disclaimer to anyone reading this looking for advice. I am nowhere close to being the next Dr Phil. If you do take anything away from this please let it be lessons learned from my mistakes. As you all know, we have two children, Hunter and Ella. Hunter was born while I was gone on a business trip, so I was a father for fifteen days before I was able to see him. It was scary for me. I didn’t know what I was doing. I didn’t realize how many things in our lives would change when a baby was introduced to the equation. I was naive and stupid; I thought why do we have to change anything, this is our house not his. Boy was I wrong. Before we could get adjusted, we moved from Montana to Texas when he was just a couple of months old. We lived in Wichita Falls, Texas which is a wonderful warm town, which is why it was incredibly hard to pull Kacey away. (Insert sarcasm here) We raised Hunter into a wonderful young man and had discussed briefly having another child. Ella came to us with out our prior approval. We definitely wanted to have more children, we just thought we would have planned it a little better (or planned it at all for that matter). So we began to plan for her arrival. Kacey took care of all the necessary doctors appointments and check-ups. Then one day Kacey called me in Code 3 crisis mode telling me to come home now. When I walked through the door, she was sobbing about how the triple screen said our baby had Down syndrome. I immediately thought, “What the hell is a triple screen.” But after I had her calmed down, we started to discuss our options and what this thing meant.

This is probably a perfect spot to describe my wife and I. I tend to look for the natural solutions in problems. If a problem is completely out of my control, I do not worry about it. She worries about everything. I told her that we wouldn’t do anything about it anyways so stop worrying. (Fathers this is one of those things you do not want to do.) For us there was no option other than to deal with it. In hindsight I should have been more concerned about my wife’s fears. I should have dropped the ideation that I am a leader, follow me and everything will be alright. (Everything will be alright, but try to understand the stresses involved.) I assured her that a 1 in 200 chance was the same as saying there was a 99.5% chance our baby did not have DS. So we went to a “specialist” in Dallas, TX, that assured us he did not find any flags or markers in Ella’s ultrasound to even remotely think she had DS. He even said “typical” kids can show markers in the ultrasound and not have DS. He said the only way to know for sure was an amnio test. I immediately thought, “What the hell is an amnio test.” But we did not have the test done because the odds of miscarriage was the same as her having DS. Which she had no markers for. So I said, “See nothing to worry about. Told you so.” Looking back on the whole thing I am so happy he did not find any markers, because Kacey would have been a mess the rest of her pregnancy. (Dads know this… tests suck.) The next couple of months were spent getting ready for the baby.

Change of plans again. Uncle Sam decided the birth of a child is overrated and wanted to send me to Iraq for a year, with three months of training before hand. I would have missed the birth of both of my children. Plus with the time frame, my “sunny beach vacation” would run up close to my separation date. Oh and did I mention I had to leave in two weeks? Our plan was to move Kacey and Hunter up to Alaska to be with her parents. This was Friday. On Wednesday as I was trying to get all of my processing paperwork done, Kacey called me and said she was having contractions and her doctor wanted her to go to the ER. Her doctor was adamant that she would not delivery Ella that day. (She was 6 weeks premature and they thought her weight was low.) We were in agreement that Ella should not come this early. We were packing a house and were not setup for a baby. But at eight that night, Kacey was rushed into an emergency C-section, Ella was coming with our permission or not. When she was born, she cried, it sounded very quiet like a kitten. Kacey and I cried. The whole process was 10 minutes tops. While they were putting Kacey back together, I was allowed to go into the NICU to see my daughter. She looked amazing. What a miracle, I cried again. The pediatric doctor came in and went to shake my hand. I was about to accept his congratulations when he flipped my palm up and started reading my palm. He muttered about me “not having it” and left. I later learned that he was checking me for a simian crease. He went to my wife’s beside with her doctor and told her they were going to test Ella for DS. They went over all the features that led them to believe she had it. Low set ears, the simian crease, boxed off toes, and some other things. Then they left without explaining anything. We were less than happy with our doctor’s care. They said the blood test would take a week, oh and she has a hole in her heart, see ya’ll in the morning. When I looked at Ella again in the NICU after the doctors suspicions, I knew that she had DS. She was so beautiful, sleeping in the cradle. She hadn’t even opened her eyes yet and I was wrapped around her finger. I did not tell Kacey my suspicions I just tried to reassure her that she looked like any other baby to me. (Fathers tread carefully with the information you provide a new mother, you are on your own with that decision.) Then the next day we went home. No instruction manual, no special instructions just have fun. My wife was constantly comparing her to pictures of Hunter as a newborn and his low set ears. Nope she doesn’t have it. Denial can be a powerful thing, but you can’t ignore it, you can’t change it, and you can’t trade places with your child. Oh and you didn’t do anything wrong. You were chosen for a very specific reason, and you might not know what that is. Anyways, so I argued and fought with the Air Force to get me out of my deployment. They didn’t care. I almost had to quit. (I don’t think you can quit the military, but I was going to try. I was not leaving my wingman.) They eventually sent someone else and relieved me of my trip. I tried to keep to normal activities to keep Kacey going. (To say she was a wreck is like describing a mountain as a pile of rocks.) When I say she was having a bad time, I mean it. (Dads she can not do it by herself and you should break your neck providing for her.) Things got better so I thought. We still had moments of panic from time to time, like when she couldn’t pass hearing tests, or when we had to call the ambulance twice, or the countless bouts with pneumonia or the croup. But we survived long enough to leave the Air Force and plant ourselves in Spokane, WA. Two days after we got here, Ella ended up in the hospital. (No it really doesn’t end) Then there were possible eye problems, and getting set up with new services. It is incredibly easy to get caught up in the problems, just remember to take the time to enjoy yourself along the way. Most of the time I left Kacey to deal with her issues by herself because I had no idea how to fix her. The logic behind my thinking was time heals all wounds, and it does if you have enough time. Some of us will not have enough time to heal. Some wounds are just too big. A child with special needs will drain you as a person and your relationships if you let them. The appointments and specialists and therapists will take its toll. Nurture your marriage more than your child. Trust me on this, your child will be alright, you might not be. It will be a hard long road but the benefits are well worth it. If you only focus on your child you will forget about the bond that created that very precious child in the first place. Don’t give up on each other and look out for yourselves. (Dads seriously check your ego; if you have problems you can’t fix, do not ignore them, and seek professional help.) Lead from the front and take care of your family… all of your family.

Our life’s journey has been tough at times but enjoyable throughout, and I wouldn’t change a thing. Remember in a hundred years it will not matter how much money you had, what kind of car you drove, or the size of the house you lived in; but the world will be a better place if you were important in the life of a child. I want to personally thank all of you for reading my wife’s blog. It is the stress relief that keeps her going and we love showing off our children for everyone that shows interest. She has done such an amazing job that I am in awe at her dedication, compassion, and enthusiasm. She inspires me as I know she inspires each of you.