In my shoes...

"In my shoes" is a weekly series that is updated every Thursday. I hope you enjoy the following post and that like me, you will learn more about a different walk of life, which will help you to love better! We love comments or likes and would love to have you follow this series with us. We have some amazing women and amazing topics to share.

When Mindy asked me what is was like to have a child with Downs Syndrome...all I could think of was ultra fun descriptive words like FABULOUS, YUMMY, CRAZY AWESOME AND DELICIOUS. I can easily got off track when talking about how fantastic being the mommy to this sweet boy is. I will do my best to stay in line...

On September 11th, 2008 God brought us the most beautiful and perfect little boy. Four weeks early. In the middle of Hurricane Ike. While on a day trip to Houston. Chaos is an understatement. However, a calmness arrived the moment he was born. The fact that the city had no power was just not an issue (later it would be). All that mattered was that we had this tiny, round little baby that was perfect and precious in every way. 


Twelve hours later...we finally agreed to let go of Brody. We let the doctors and nurses have him so that we could have a little rest. I could not sleep though...something was heavy on my heart and I just could not figure out what. I was concerned about our three year old, Bryce, that was staying away from us during this scary storm...but I could tell there was something bigger bothering me. I could not put my finger on it. Soon enough, I got my answer.

The doctor came in at 3:07AM to tell me that our little baby Brody was up in the NICU. She told me he was moved there because he had a birth defect called Duodenal Atresia (blockage between stomach and intestines) and she suspected he had Downs Syndrome. I lost my mind. Lost it right out the window. I could have punched her or slapped her or called her the ugliest name in town. Instead I sat there and said nothing. Stared blankly. She was a liar. A big fat liar. I prayed to God and begged him that she had the wrong room. She didn't. She was not a liar...not even at all.  

 The next 24 hours was a blur. Brody was sent by life flight to another hospital and we were whisked out the door. The city was on lock down and there was no room for us to stay. There was also no room for us to stay at the hospital Brody was sent to. We were not even allowed to stay in the waiting room. We left with our heads hanging. In the middle of a hurricane. With very very broken hearts. 


The next two weeks were miserable. We slept on the floor of our old house with no electricity, no water, no food and no hope whatsoever. The only store in town open was Walgreens. We spent $1,000 in 10 days eating at Walgreens, paying for parking and gas to get to our baby boy and trying to keep Bryce occupied from all the devastation. We finally got word that it was safe enough to transfer him back to San Antonio. He would be living at Methodist Hospital until further notice. He had his surgery (to correct the duodenal atresia), got the IV out of his head, went from nasal tube feedings to oral tube feedings to nursing...and 32 days later we were home. Home with our Downs Syndrome baby. Home with Brody. 

Now through all of this...I don't even recall thinking about God. I know that we prayed and prayed and prayed. We had pastors come, we prayed over him, they prayed over him...but we never really sat down and realized that this was Gods plan for us. We were running around like two silly bagoons trying to figure out what was next and how we would do this and afford that and get here and go there. God worked out all of that out for us...laughing at us for making such fools out of ourselves. When the storm (literal and figurative) finally blew over...we sat back in awe at how God had gotten us through it. We didn't ever stop and ask for His help...but he was totally holding our hands the whole time. Our marriage grew leaps and bounds and we had not even realized. We were so grateful for that extra 21st chromosome. God knew just how much we could handle. He rocks.

So....today we have this INCREDIBLE two year old boy that lights up the room. He actually lights up the town. He smiles with his whole entire body and he laughs with his complete soul. He is smart and funny and ultra super silly. You can see God's light shining through his beautiful green eyes. Now, it has not been ALL roses. Overall....beautiful...but also crazy hard. 

People have said some pretty stupid things. Here are a few of my favorites:

1. Why does he have downs syndrome? 

2. Did you eat a lot of junk food in your pregnancy?

3. You know you could have had an abortion. (Swear on my life this has been said...TWICE.)

4. Oh my, his teeth are weird! (And no, a 3 year old did not say that...a grown woman did). 

5. But you are so young (I was 24 when I had him) I thought only old people had downs babies... Well who did he get it from? (AHHH!!!) 

6. You should rub lemons on his feet...it will heal him.  

7. He does not look THAT bad, maybe he only just has it a little bit. 

Yuck to all of that right?! 


It is mostly just hilarious to us. We just understand that many people are very uninformed of what exactly downs syndrome is. Our favorite question is "What exactly is downs syndrome?" The most simple answer is: It is just an extra 21st chromosome. That's it. Nothing weird about that to me. I love it when people don't understand what it is and can admit that. I love it when people actually want to know. I especially LOVE when people realize that Downs Syndrome is the LEAST exciting thing about Brody. He is so much more than that.  He is loving, kind, sweet and ALWAYS happy. He eats like cookie monster (sound effects and all), likes to do this fancy giraffe walk and claps for himself atleast ten times a day. Our daily life is not much different because of downs syndrome.  In fact, sometimes, I forget that Brody has downs syndrome. 

  
When we first had Brody, I heard about all the programs and classes that would help us get Brody on the "right track"... the problem is that they are typically for low-income families, or they are way over-priced, which makes it next to impossible for middle-class families to participate in. It was very discouraging...I mean, how was I supposed to know what to do? When he was 2 months old we found out about ECI (early childhood intervention). This is the only non-income based program available to us. Every week either his Occupational Therapist or Speech Therapist come to our home or to preschool and works/plays with us. They are such a blessing to us and are now just part of our family. They even take time to watch Bryce do tricks on the trampoline or to hold Braxton while I try something new with Brody.  We've learned that Brody is just like any other child, and the decisions we have made for him are what is best for our family. Just like some families choose to enroll their kiddo's in pre-school, music class, etc, and some don't. It's really no different. The therapists rock our socks and for now I dread the day that he turns three and these services are no longer available. 

The best advice I have ever received from a fellow DS mama is this: Treat him just like you treat your other children. Love him and discipline and care for him in the same way and always expect him to rise to the occasion...and guess what? He always does. 

  

I have a great friend from our church who has given me great wisdom on the odd's and end's of raising a child with ds and I am so thankful for her. I have also had people who have just found out the news about their child,  ask me about what our life is like, and I am so thrilled to inform and encourage parents who are new to this journey.

Unfortunately, I have seen that a lot of people in the medical world only tell you the horror stories, and the possible things that could go wrong with these precious children. They do not sit you down and tell you that your baby will have the most beautiful laugh, that he or she will walk run and play with his peers. That he will be the perfect example of how God NEVER makes a mistake. They don't tell you that your world will be expanded to a whole bunch of children that are beautiful and hilarious! Instead they tell you statistics on what his chances of getting leukemia (way too high to mention) or vision problems or hearing loss or RSV or every kind of cancer and a plethora of other yucky things. Doctors and nurses have scared us to death. They have brought us to tears with fear. Good thing God knows what is to come....and they don't. 

Our oldest son, Bryce(5), has no idea what Downs Syndrome is. We don't really walk around our house talking about that...because well...why would we? All he knows that Brody is his baby brother. He knows that Brody gets into his things (just like a little brother should), he knows that Brody LOVES to break out in a dance party at any given moment...but he has no clue his brother has a "disability." We will cross that bridge when we get to it, but for now, sweet Bryce is just the proud big brother to two very cute (and to him sometimes annoying) little brothers. 


Brody even got his five minutes of fame this year. He was featured in the Downs Syndrome Association calendar as Mr. February!! What a stud! Photographers donated their time and sales of the calendar went to raise awareness of DS.  

The way God has aligned everything in our lives has been so beautiful. We never get it as its happening...but afterwards when you have that AHA moment...its just such a fabulous feeling. Its such an affirmation of our obedient faith. Trusting in God is not always the easiest thing to conquer, but man it feels good when you stick to it. I literally could write all day about the amazing experiences we have had, the friendships we have made, the people who have blessed us, the lessons God has placed in our laps...all because of Brody. He is my hero. He is my miracle. He is my middle son. He is my light. 

I would love for you to continue to follow our journey or to check out what I did not blab out during this post. You can find our families blog here. Please pray with us and for us. Please know that we do not have all the answers. Please know that we are just people, madly in love, with three precious preschool boys.

Trust in the Lord with all your heart and lean not on your own understanding. 

Proverbs 3:5

Written by my friend, Misty McElhannon.

http://www.keepingupwiththemcelhannons.blogspot.com/