Monday, February 9, 2015

But... "How is he?"

I'm sure you have friends, family, someone in your life who asks how you are, how your kids are, what kinds of things have you all been up to since the last time you saw each other. (At least I hope you do!) This is the story of a mom I met today, she has a little girl with DS as well.

I took the boys to the playground, our usual haunt on an awesomely spring-like day, and as my oldest son ran off to the zip line, I pushed Jeremy over to a bench to give him some lunch, let him play in the sun. (Really I was hoping that I could give both boys lunch at the park and then they would fall asleep on the way home and I could have a few hours of *silence*! But the best laid plans, right?) As I sat on the bench and watched Jeremy throw playground mulch everywhere, I saw a mom with a little girl over by the zip line. I couldn't see the little girl's face, but from her gait to the way she bent over, every bone in me screamed "that little girl has DS!!" I just knew it, like I just know that first latte in the morning is going to calm me down, like I just know how a Cadbury mini egg taste when its not even close to Easter yet! It's not that I identify individuals based on looks or abilities, but I do categorize how I am going to respond to individuals based on commonalities I perceive us to have.

She came over to us (for the record I very rarely approach anyone - I don't know how some parents would respond) and introduced herself and her daughter (who by the way has the same name as my sister, which is not common at all!) and she asked about Jeremy. After the initial introductions of our kiddos she asked me, "How is he?"

Isn't that such a loaded question? "How is he?" from any other person that does not share that 47th chromosome in common with our family it seems almost obligatory. And do you know why that is? Because I have found most people don't know enough about DS, or understand all of the medical problems that can be associated with DS, so their question seems to require an answer that is as basic as it can get; "Oh, you know just being like any other pre-two year old... stubborn as hell, destructive too!"

But I think (and this is me, not based on fact or fiction!) that parents of children with special needs, and in this case a 47th chromie, ask this question because they get it. They get how hard it is. They get how scary it is. They get how much it sucks to go to the doctor week after week for weight checks and the scale isn't moving up. They get how hard it is to watch your child trying to learn, and stumbling a lot, and working harder than all the other 46 chromies are. They get the terms CAVC, VSD, ASD, G-tube, hypotonia, clubfoot, etc. They just get it. So you know when you're asked "How is he?" you can answer freely, you can use as many acronyms to describe medical procedures as you want because they probably have experience with it, you can say "we just can't get his nutrition right," "even though he had a CAVC repair he still has a VSD." You can say these things and there is no need to explain what you mean, because they just know.

Thursday, December 11, 2014

Welcome to the Club!!

Right about now you may wonder, "What club? Have I been internetting in my sleep again?" Surely you did not sign up for this club, or maybe you did, but didn't realize at the time that you were signing up. You are probably wondering, what's the fee? Nothing but some love, patience, and support. You may also wonder, how long is my membership good for? A LIFETIME!

Whoa! A free club, with a lifetime membership!? It sounds almost too good to be true! It is!! And YOU are so lucky, because not everyone gets to be a member of this club. There is only one real requirement - either have or love someone with a triplicated copy of the 21st chromosome!

I joined in 2013. By pure virtue of giving birth to a son with Down syndrome. Some of may have joined by virtue of adoption (and to you... to you I give a round of applause!!). I didn't know I would be in this club on May 1, 2013... actually I didn't know for sure (by actual genetic testing) until May 10, 2013, but there were enough signs that I was pretty sure all I was waiting on was my membership card!

If you're new to our super-secret-special-club then I want to welcome you, you are in for one amazing ride. If you're not new, then I want to say that I am glad you have stayed around, and thank you for paving the way... how has your ride been?

Pre- and post-natal diagnosis of Down syndrome is one hot topic I tell ya! Our family did not have a prenatal diagnosis - only a suspicion of what was a possibility based on other soft markers. But we did and do have lots of love no matter what for our children... and we knew that Jeremy would be someone special. I've read so many articles and have seen so many statistics that give really high numbers (which I will not quote because I do not know the accuracy of these reports) for the rate of babies with DS or suspected DS being aborted, right now you may be reading this and this may be a decision you are contemplating. WAIT DON'T GO! I want to tell you, that even though it may seem like it will be hard, and it will be different... it most definitely will, you are right. It will be so much more than simply being the parent of a child with DS. It will be about cheering your son or daughter on as they reach milestones that are difficult and the result of countless hours of therapy, it will be about rejoicing when medical tests come back the way you want, it will be about laughing as others wonder how you do it, it will be humbling, and it will try your every nerve, in every fiber of your being. But it will all be worth it! You know why? Because you'll get to see smiles like this:
Did you receive a post-natal diagnosis? Right now you may be stumbling blindly through those first few days as you try to sort out your feelings. "Holy crap!" You may think, "I just had a baby," and then, "He (or she) probably has Down syndrome, what is that? How do I do this?" and then you may be sad, "Where's the baby I did sign on for? The one with three creases in her hand, the one with regular not-almond-shaped eyes?" It's okay to feel this way! It's totally normal, I think we all do it, even those who have a prenatal diagnosis and have had time to prepare. After you stumble out of the fog and receive confirmation of a diagnosis of DS, remember there is a whole community of people - many of us run FB pages, blogs etc. just to provide updates, information, and a whole lot of DS-fun.

Welcome to the Club!!

Thursday, November 20, 2014

Learning to Love.

I think its safe to say I love all of my children unconditionally, but I had to learn to love Jeremy and see past Down syndrome and health problems to see the baby that was an extension of my husband and me. My other kids were easy to love, it was an immediate response, and there was nothing we had to worry about (medically), instantly we knew they would thrive. My prenatal (almost kinda) diagnosis scared the shit out of me. And because I always see the glass as half full I instinctively figured I was thinking "the worst possible scenario." Remember, these were my thoughts prior to Jeremy entering the world. Part of me grew afraid to really love Jeremy, and not because of the possibility of Down syndrome, but because I was afraid he would be taken away far too early. I don't think my heart could handle losing something it unconditionally loves.
 We left Germany so fast, and everything was a whirlwind that I never got to really sit still and learn to love Jeremy and simultaneously not be afraid that he would pass away because of his heart condition. It was a weird feeling, knowing I should be blissfully happy, but unable to find that place. It was like I was on the edge of a cliff. One wrong step and I would go plummeting to Earth. So I pretended. It was much easier to pretend to be blissfully happy, while also showing the right amount of concern, and the right amount of love.

It was also difficult to find a new normal because I was mostly afraid of acceptance. Realistically I knew our family and my closest of friends would unconditionally accept him; they have no choice. (Really they don't, because I think they all know I would cut them out in an instant and not look back.) I was afraid of acceptance from the world. Its difficult because it is so easy for the world to accept what has been determined as normal; easy. Fortunately, there are so many programs available, and a lot of support, that those feelings have subsided. Now I think, "take it or leave it, this is us."

For the record, once his heart condition was under control and I really understood what it would mean, I was able to stop thinking that he would leave us too early. Although learning to love him and all his glorious chromosomes was difficult in the first few days, I found that it came easily... like breathing.

Also, that baby is my "muffins." He knows I want to eat him up every chance I get!

Saturday, October 25, 2014

This Down Syndrome Awareness Month - Seek to Educate

I have recently read two articles out of the U.K. from two women who either aborted a baby with Down syndrome, or wished she had aborted her (now adult) son with Down syndrome. I have also read comments from Richard Dawkins, who believes abortion is necessary when there is a diagnosis of DS. I will very rarely write a blog in response to articles like these, but because I have seen them numerous times and have commented on a few threads, I thought I would share my opinion here.

Those of us that have chosen to share our journeys with our children are doing so to raise awareness - I do so to raise awareness and teach others about DS; the good, the bad, and the ugly. I feel this is an accurate statement from what I see on a majority of the Facebook pages I follow. Part of raising awareness is educating people about both sides, you cannot teach people how to make green without offering yellow and blue. While these articles have come out at a time that I would consider rather inopportune (during DS Awareness month), they have done what the writer intended - sought a reaction from a lot of people all over the world.

Obviously we did not choose abortion. We also did not have a prenatal diagnosis, only a suspicion that we refused to have confirmed until birth, because it would not have mattered one way or another. I will say that I do not agree with the woman who chose to abort. I understand her reasoning behind it, I understand her child had a 1% chance at life because of other medical complications. But my personal opinion is that 1% is better than 0%. I would rather have the heartache and know I tried.

As for the woman who wishes she had aborted her son (who is now 47), I feel bad for her. I feel that she must have missed out on the support system many of us do have now. I realize that "times are a changin'" and raising a child with DS today is nothing like raising a child with DS 47 years ago, and these parents did indeed pave the path many of us are now following and expanding. I feel bad that she missed out on this opportunity that I look forward to.

But as for this family - we love Jeremy, he is as much a part of this family as any of our other children are, he was the last piece to our puzzle and we are the team that he needs.

Awareness is raised through education, and education can change the world. 

Friday, August 1, 2014

Advocating for Your Child.

Without a doubt the most difficult thing I have had to learn (besides Excel QM) is how to advocate for my child. I have never been one to really question medical opinion, after all I am not a doctor, but recent events have caused me to pause and think twice. Jeremy was recently hospitalized with pneumonia and the events that occurred during his hospitalization led to this letter, written by yours truly, to the Patient Advocate at the medical facility (I have removed identifying information):

I am writing in regards to a recent experience I had with my son in the Multi-Service Unit. On Thurs, 3 July I took my son to the ER because of a cough and high temperature. He was diagnosed with Acute Pneumonia (validated by chest X-rays) and sent home on 4ml of amoxicillin and a tylenol/ ibuprofen regimen to keep the fever down. On Sat., 5 July my son woke with a fever and was eating very little and not drinking. I checked his temperature within the hour and it had spiked at 102.3. At that time I brought my son back to the ER because of the fever and I was concerned that he was exhibiting signs of hypoxia. At the ER he was given fluids and a higher strength tylenol that immediately brought his fever down. During this visit the ER doctor and the pediatric on-call doctor decided that Jeremy needed to stay for a night to be observed and see if he still showed signs of oxygen deprivation.

The following events occurred:

1. I observed and heard nurses directing technicians in training to come to his room because this could possibly be their only time seeing a "Down syndrome baby", and this would be good training for them.

2. We were told on the first night he was staying because of low oxygen saturation levels. The second night we received the same story, and it had been added that he needed to stay because he was exhibiting signs of failure-to-thrive (he is underweight). The third night we were told he needed to be on oxygen therefore we needed to stay. The fourth day he was weaned off oxygen and then for no reason he was put back on oxygen for the night (he showed no signs of hypoxia or had low oxygen saturations), that night we were told we needed to stay because his heart rate was low.

3. During our stay I was told that I needed to coordinate with the nutritionist at the treatment facility to discuss the reasons why he was underweight. I informed the nurses and doctors that his failure-to-thrive condition was not a new problem and was being addressed by his PCM-team at his normal medical facility and they could contact them to verify. My requests went unheard, instead I was told this nutritionist was who I needed to deal with. I also asked the nurses and doctors to contact his pediatric cardiologist about his low heart rate, the request went unheard. It was not until they day we were discharged she was finally called and asked for her opinion.

4. I was told at one point that he might possibly have leukemia because he had dots on his belly.

First, my son is not an exhibit. He is not "the Down syndrome child." He is a child WITH Down syndrome. He is also NOT a "training opportunity." I cannot stress enough that my child is not some guinea pig for technicians to earn their badges on. He is a human being who has very human emotions. When he is being poked by everyone because everyone should get their chance to try and get an IV in him, he will hurt and he will cry.

Second, my son is underweight. When I describe to nurses and doctors that this is not a new condition and it is not something they will fix in 4-days I expect to be heard. When I offer his team at his normal facility as a second opinion, I expect that offer to be taken seriously and for his team to be called. I also expect to be given the respect as his mother that I may actually have a clue what has happened medically with my son over 14-months.

Third, I expect to be told EXACTLY why we are staying at the hospital for numerous nights. To simply give (what appears to me) to be a new reason everyday for further observation does not offer me a transparent view of his condition. I also expect every-single-last-person who touches him to know EXACTLY what is going on with him. During our stay there was not a single nurse, doctor, or tech who was on the same page or had the same story.

Fourth, I expect outrageous claims like leukemia to be founded by actual medical evidence. To simply say these dots mean leukemia is an absolutely crazy and irresponsible thing to do to parents or patients.

Lastly, and this occurred yesterday and is why I am submitting this letter, I was told at a follow-up with Pulmonary at that Jeremy had actually experienced a collapsed lung due to the pneumonia. During our entire stay this was never made known to me or my husband. We were told he had acute pneumonia, possibly leukemia, low weight gain, low saturations, and a low heart rate... but never this.

We were finally discharged because ONE nurse actually asked me what I felt about my baby and how he was doing. She actually listened and actually spoke to the doctor and explained my concerns and desires. During the 5-day stay she was the only nurse to do so. I am not sure what course of action you will take, but I do feel some training is needed that addresses continuity with patient care, listening to patient's parents etc. about patient's medical history, and understanding that not every situation is a training opportunity. At the very least some discretion in using phrases like that could be utilized.

What I have learned from this experience is that I cannot sit back and let medical take the wheel. Hopefully incidents like these will be few and far between! At the end of the day - do not be afraid to advocate for your child! You may just save another family undue stress in the process!

Sunday, July 20, 2014

21 Things...

In honor of Jeremy's triplicated 21st, I thought I would share 21 things I love about him:

1. He wakes not with a bang, but with a smile. He doesn't scream for us to come get him, rather he lays there, plays with his feet, and babbles.

2. The way he laughs is infectious. You cannot possibly be in a bad mood when you hear him laugh, with his whole body not just his face.

3. He loves to lay on the floor and kick his feet froggy style while flapping his arms like a bird.

4. The way his hands still confuse him. He stares at his hands and turns them all around like he just can't believe he controls those things!

5. The way he literally shovels food in his mouth. I watched this kiddo put fistfuls of popcorn in his mouth the other day! How does he do this?

6. The "Walter" face he makes. Even though it is because he is sad, it is still the funniest face I have ever seen. (Walter is a puppet Jeff Dunham owns)

7. How incredibly limber this kid is. I have never seen anything like it! He brings his toes to his mouth like its his second job!

8. His kisses. They are more like face bites with a lot of slobber, but I tell ya what, those kisses are the best!

9. The way he is "cuddle-sized." He is seriously 15 months old and wears 9-12 month clothing. I still can't find shoes that fit his tiny feet. I LOVE IT!

10. Everything stops for a milestone! I celebrated milestones with our other children, but his milestones are extra special for two reasons: it is the last time I will see one of my children accomplish a first, AND he works so hard to reach every milestone!

11. His tiny toes. They are seriously the cutest toes this side of the Mississippi.

12. When he lets me grab his hands and practice signs with him. He really looks like he is concentrating. Its as though he is thinking "I know this is important and I need to remember it."

13. His big, beautiful two-toned blue eyes. I have never seen eyes have two distinct variations of blue, but his do... and I'm kinda jealous I don't have something nearly as cool!

14. His CAVC repair scar. It reminds me how fragile life is, and reminds me to be thankful for great people who turn into great doctors and nurses that can fix big problems so little guys like him can continue to be in our lives.

15. The way he tries to turn his head in his car seat to look at me. He always tries to peer around the side and then meets me with a giant smile... it takes the road rage away!

16. The way he cries when he hears his PTs voice. It's kind of sad, but also makes me really proud because he recognizes and remembers that she causes him to work so hard!

17. The way he loves a noisy toy that he can sling back and forth. Currently it is his baby wipes package. The smile on his face and reckless abandon with which he slings...

18. The way he has given me a voice. I have always been quick to stand up and say whats on my mind, but usually that was it. Now I realize I have to fight to be heard when I disagree with something.

19. How relaxed he is. He is seriously the most relaxed baby ever. Its like he was born on a tropical island and all he needs to worry about is catching the next wave.

20. The way he pets animals. He actually really pets them. He doesn't grab at them, or pinch them, he just rubs his little hand down their fur coat. He loves it!

21. The community he has invited us to join. The Down syndrome community is small but reaches all over the globe. Without him I would have never known this existed!

Wednesday, June 18, 2014

Everyone's Life has a Purpose.

I am generally extremely optimistic about everything relating to Jeremy. Needs heart surgery? Cool, we'll find the best doc, best hospital and get it done. Can't gain weight? It's ok he'll do so in his own time. Lab work again? Well good thing I brought some snacks for him, and my phone is charged because this could be either a 10 minute ordeal or a two hour test of my patience with the medical facility.

However, my emotions can range from the glass is half full to "Holy shit what if this was us, how would I live through this?" Because I like to live in this world where every thing is coming up roses, I try to stay away from truly saddening stories, they just make me so sad and I don't like to be in that place; physically and emotionally. I try not to Google any little thing Jeremy has (like this week its been a bloody nose, which the rational side of me says it's from his ever-running nose and numerous wipes throughout the day... but the irrational side says "Holy crap, if I bring this up on Friday it could possible lead to a battery of tests and what if its..." Googling almost always leads to some rare cancer or disease... (seriously, I Googled my sciatica pain once and according to WebMD my kidneys were about to explode and I should most definitely be at the ER).

I recently started following little Annie on Facebook. She was denied a heart transplant, there are a range of stories that depict many scenarios why. I have read that a person with Down syndrome does not qualify for any kind of transplant because of the quality of life factor. I have also read that people with Down syndrome can qualify for transplants and it is totally dependent on the overall medical situation. Who really knows? I think it may be on a case-by-case basis. What I do know is little Annie's story is so sad, and the pictures posted tugged at my heart strings and made those feelings fall out of my eyes, she was literally dying one still frame at a time.

Last week another baby, Ryder also passed away from a disease that, in hindsight, can be prevented through vaccinations. (The unvax of Ryder was reportedly not the fault of his parents, they did not know the B-strain vax was available as he was vax'd for the C-strain; simply it appears they were not informed).

Simply put, I constantly struggle with the very real world I now live in; one where my child could possibly become very sick, one where he may be determined to be undeserving of a second chance at life because of his genetic make-up. I realize some folks read this and think "really crazy person? Anytime you can walk outside and be hit by a bus!" I guess its just the odds seem different somehow... greater and not in our favor.

(For the record- I am very pro-vaccinations, I am also very pro-transplants in anyone that qualifies regardless of genetic make-up)