9 Reasons Why I'm Grateful My Son Has Down Syndrome

I am a member of several Down syndrome support groups. Because of my schedule, I don't get to meet with many other parents in person, so I choose to stay in touch online and offer support as needed via the Internet.

There are a surprising number of parents who find out about their child's Down syndrome diagnosis and then join support groups in a tissy because they are worried about how bad it will be to have a child with Trisomy 21.

Now that Jacob is nearly seven, I like to think I have a bit of experience. So, to all those parents who just found out their child has Down syndrome, let me congratulate you. You've won the lottery! You will now get to raise one of the most amazing children on the planet!!

Why do I think that? Let me give you nine reasons:

1. They love unconditionally. I thank my lucky stars each and every day for Jacob.  He is the kind of person who doesn't care what you look like, smell like, or think like.  He doesn't care if you're young (though he is partial to babies and children smaller than him), old, middle-aged, black, white, tan, green, or purple. He loves you. If you grump. He ignores it (for the most part).  If you grump at him, he gets over it pretty fast and loves you anyway.  Every day he teaches me to look beyond the cover, and see what's inside.  That's where a person's true value lies, and everyone is worth loving.

2. They give more than they take. Yes, children with Down syndrome require extra work, extra patience, and often extra care. But they seem to give back tenfold.  When ever I need to smile. Jacob gives me seven. And then he laughs until I'm giggling right next to him.  If I need a hug, he'll snuggle all day long if I want.  If I need some company, he's happy to tag along wherever I go, regardless of what I'm doing.  If I need love, he will smother me with kisses and adoration.  If I need space, he's happy to give me some of that too. The boy's a giver.

3. They are intuitive to other's needs. I am constantly amazed at how in tune Jacob is to the needs of others around him. Granted, sometimes he still says, "screw you!", but most of the time, he senses our moods and our needs and works extra hard to give them to us.  If I'm sick, that's the day he decides to hang around, watching Netflix while cocooning at my feet. Most days, I'm running after him screaming, "get back here!" If I'm angry and need space, he usually gives it to me. If  need a hug, all the sudden he's in my face cuddling.  He's that way with others - family and strangers alike.  It's interesting to see how many strangers he interacts with and they tell me how badly they needed that time and energy from him.

4.  They teach us to stop and smell the roses. Oh, this one he's taught me six ways, side ways and upside down.  Jake is a quick learner, and he is extremely capable for a child with Ds. But if he doesn't want to learn something, or he doesn't see the value of it, nothing I do or say will make it happen. Instead, I'm forced to move at half a snail's pace, learning to appreciate the blessings I do have, feel the energy of those around us, take time to appreciate the scenery, and literally learn the joys and mysteries of playing with sticks. And I highly recommend it to anyone who is reading this. I'm a person who finds a task or chooses a goal and puts on my blinders, moving a million miles per minute until I achieve it. Jacob has taught me that not all who wander are lost.

5. They teach us that the opinions of others do not matter. On those rare occasions when someone is mean or cruel based off of Jacob's disability, or if they say something out of ignorance, it is easy to become offended, hurt or angry.  Those are the moments when I observe Jacob and realize, he doesn't really care what others think of him. He's on this earth to love and enrich those around him.  If someone wants to be his friend, then great! Join the masses.  If not, no worries.  Haters are gonna hate and he's not concerned with their opinions.

6. They teach us what is truly important in life. Before Jake was born, I used to think that having one's health was the most important thing.  If we had nothing else, then we would be fine. Then I had Jacob. And he was NOT healthy.  I spent many nights in the hospital gazing at my sleeping son with mottled skin, and labored breathes, wondering what was truly important.  If not health, then what? Then it occurred to me that the truly important things are not things. They're love and relationships, not matter how fleeting.  Money runs dry, health deteriorates, friends move on, family can be conditional.  But love conquers all, and healthy relationships will help a person survive virtually anything.

7. They teach us to never give up. My child is not a quitter. Yeah, it may take him longer to learn something. It may not. But when he puts his mind to it, hell itself won't keep him from achieving his task. Fall down seven times, get up eight? Psht. Amateurs. Fall down 57 times, get up 58.

8. They help us learn to serve others. One of the hardest things I learned to do while Jake was in the hospital was to accept help. I'm the sort of person who can plan a seven course meal with the mayor, fix your sprinkler system, sew a dress, and build you a website. With nine siblings, our parents taught us to do just about everything. And if we didn't know how, by golly open up a book and learn!  So when I was no longer able to do everything, I had to ask for (and accept) help from others.  For a very long time.  I'm talking years.  But this experience helped me learn what it feels like to ask for help, receive help, and how important it is to offer and serve others with the right attitude. Oh what a difference is makes to walk a mile in another's shoes.

9. They are unfiltered. Jacob's inability to filter his reactions is one of my favorite things about him. I always know where I stand with him. Always.  If he's upset at me, I know it. If he's happy. I'll get the biggest grin on the planet. If he's feeling playful, be prepared for lots and lots of zerberts. If he's said, he'll let me know.  I don't have to second guess, or interpret him. For a non-verbal child, Jacob is incredibly expressive.

After seven years, heart surgeries, countless medical procedures, and all the issues we've had with speech, etc. I still wouldn't trade my Jacob for anything in the world.  If I was told before he was born what his childhood would be like, I still would have chosen to keep him. Because, from beginning to end, Jacob has been one of our greatest blessings.

Losing Pick Lines and Navigating the Mass of Doctors Working on Jacob

Its been a few days since I've taken the time to post anything new in the Allred Home.  This last week has been Thanksgiving week which means we've been blessed to be surrounded by our friends, family and loved ones all week long. We have been so incredibly blessed to be surrounded by so many loving and supportive people in the last several weeks.  So much so that our 'cups runneth over'.  My house is sparkling clean from top to bottom, I have had more sleep in the last week than I have had in the last 2, I haven't cooked a meal in weeks, and everywhere I turn, someone else has been showing acts of kindness and love to our family.  We have been truly blessed by all of our friends, family, and members of our church. All I can say is "wow" - and try REALLY HARD not to choke up with emotion and gratitude from the overwhelming sense of love we have felt from you all.  Thank you.

At times it can be difficult to spend so much time with Jacob at the hospital when all the rest of our family is here from out of town.  Luckily, everyone has been very understanding with the circumstances, and have even taken shifts with Jacob so that I can get more than my customary 3-4 hours of sleep per night and try to pretend to have a semblance of a life.  Courtney has begun to show the effects of me being gone so much, but the Aunties and the grandparents have stepped in and spoiled her rotten this week.  She has taken to the whole group and asks for them whenever we are not around. 

For the most part, little Jake has been an absolute trooper.  They finally got an internal jugular pick line into his little body at the beginning of the week, only to have it "fall out" when they changed the dressing 2 days later.  How something embedded into the body 6 inches via surgery by specialists just "falls out" on its own is beyond me, but I try to give them the benefit of the doubt.  To their credit, the nurses were able to get an IV into Jacob in less than a 1/2 hour (MUCH better considering the norm is about 1 1/2 hours of screaming on his part!) and were able to get a new IJ pick line in about 6 hours later after he'd waited the customary amount of time after his feeding to go under anesthesia. 

To his credit, the doctor came in and talked to KC and apologized profusely and promised that something like that would NOT happen again.

We thought all was taken care of and we were well on the road to recovery (they were talking 10 more days of antibiotics then home!) when we got a phone call this morning from Dr. Mueller again.  The nurses had been cleaning Jacob's pick line again because there was fluid build up and pulled it out again!!  Needless to say, I nearly came unglued.  No one has talked to me about it yet (they keep seeming to want to talk to KC - I think they're trying to avoid the emotionally crazed mom) but this is beginning to get ridiculous.  Whenever I DO get to talk to someone about Jacob, his infections, the estimated time he may or may not be in the hospital, etc.  I seem to get a different variation of the same story. 

There are so many people working on Jacob and everyone seems to have their own area of expertise.  So, there seems to be little communication among one another about what is going on, the official diagnosis, and how we are going to proceed.  For instance, Dr. Mueller told KC today that they will not be putting in another pick line into Jacob again for fear that it will just come out again.  They want to keep his existing IV in for as long as they possibly can (they're hoping for 4 or 5 days).  However, that still means another 4 or 5 days that he needs antibiotics, but will have no means of administration because all of his little veins are completely exhausted and unable to maintain an IV - this is pretty much the last IV they can put in him.  Soooo what do you do when your baby can't hold and IV, he can't hold a pick line, and he NEEDs to have his antibiotics in order to leave the hospital? Shots. lots and lots of them.  They'll give him shots right into his legs filled with the antibiotics several times a day.  Great.   HOWEVER, as we were leaving the hospital today, one of the nurses stopped KC and was talking to him about the pick line and seemed to indicate that she'd be talking to the doctor and see if there was another pick line alternative.  I heard mention of putting a line into his femoral artery??  Who knows.  We'll see what tomorrow's doctor says about it all.

It's kind of like the duration of our stay here at the hospital.  If you talk to one person, we'll be here for 4 weeks.  If you talk to another it is 3.  If you talk to another we have about 10 days, etc.  I think the duration of our stay will all depend on who is in charge on which day, and what kind of mood they are in at the time...lol. 

To say the least, I am mastering the art of patience and how to bite my tongue.  It does me no good if I start yelling at the nurses and become the 'mother from Hell', does it?  Although I must say, my patience is only going to last so long.  I only have a few drops of it left.

...This too shall pass.....like a kidney stone!