The seat

Every once in awhile, I’ll look across the room and David will be sitting or playing on the loveseat in our living room. It is such a beautiful juxtaposition for me. That is the loveseat Jason & I sat on the day we received our prenatal diagnosis of Down syndrome for David. We told Jason’s mom the news on that seat. Jason sat in silence with tears running down his cheeks on that seat. We sat underneath a cloud of sorrow on that seat. We were confused and scared and overwhelmed on that seat. I don’t think I’ll ever be able to think about that day without thinking about the loveseat and the shock and grief we experienced there.

And now there’s today. Almost two and half years to the day after receiving our diagnosis. Every single thing has changed. We still have the loveseat, but it’s filled with joy. Our biggest surprise and sweetest blessing plays on that seat. It is truly a seat of love (yep, I went there)

  

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The never-ending story

Yesterday, I had my first break down since David was admitted. I called up to his room to chat with his nurse and ended up sobbing and sobbing. Like any parent, I want answers, and more importantly I want results. At this point it seems like they are doing everything they can and yet he’s still on just as much oxygen, with just as much pressure. At this rate, we could be in the hospital for a month! I mean, who hasn’t been battling a cough and phlegm for weeks now? I have! And I’m relatively healthy and have strong lungs. Poor David already starts at a disadvantage and has small, compact lungs. While he’s not regressing, he’s certainly not progressing and that leaves Jason and I feeling helpless.
David is happy, he’s engaging. He’s having dance parties with his visitors and he misses us. This whole stay may be “easier” to take if he at least appeared sick. If he had a fever and was lethargic and fussy, we may think, “Ok, he’s really sick. He needs to be admitted.” But he’s his happy, giddy self. He’s flirting and smiling and winning hearts each day. We miss him! We want him home.
I will not speak for the rest of my dear Down syndrome community. The following is simply my own personal views and experience. This is the part of Down syndrome that is hard. David is not hard. David is a delight. And there are many kiddos with Down syndrome who don’t have the health issues that David and others have. For them, the difficulty is with IEP’s and inclusion and milestones. And I am sure that is hard. I’m sure that’s exhausting and frustrating. But today, I would take six more hours on the phone fighting with Medicaid (which, sadly, is also part of my norm) over another day in the hospital. Down syndrome is nothing like I thought it would be. It is more rewarding and more challenging than I expected. But it’s the health issues that provide the greatest challenge. It’s the idea that this could be forever. Not a lifetime hospital stay, but we could expect to be hospitalized at least once a year for life! That’s exhausting.
Today, keep praying for us. Pray that David turns a major corner. Pray that all the suctioning and oxygen finally click and his body starts to heal. Pray that Jason, Ella & I can continue and be encouraged. Pray for our rest, health and bodies (we’re all a little sick) and pray that this is David’s only hospital stay in 2015.
“The Lord will fight for you; You need only to be still.” Exodus 14:14

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The justification

We’re on day four of a new hospital stay. It’s been over 280 days since the last time we were admitted. Long enough to get comfortable & a little cocky. Hospital stays are for the really young & “sickly”. David is bigger, stronger, healthier. He can handle anything! Or so we thought.
His scheduled Botox to “fix” his swallowing issues has turned into four full days of tubes, wires & questions. Why aren’t his oxygen levels higher? Is this really just a common cold? Did the Botox move?
In the meantime, Jason & I are trying to navigate this all over again. The last time we were here, this was all “normal”. He had spent over half of his life in the hospital so we had a routine down and a flow. This time, we’re rattled. It’s unexpected and frustrating. Plus, he’s bigger and understands more so going about our daily business and trusting his care to nurses isn’t as realistic. He’s bored and interactive and misses us when we’re gone. We’ve been taking turns spending every night here but we have Ella to consider too. And, unlike last time, she has school and a routine to contend with as well.
In the midst of all this, I realize how much I try and normalize our situation. I keep putting on a happy face and moving forward with previous plans. After all, this is “typical” for us. The world can’t stop because our little guy is in a time out.
But our world can. I’m not sure why I continue to “Pollyanna” our situation and down play this experience. If anyone else I knew had a kiddo in the hospital, I would be freaking out for them. So why aren’t I? I was invited to a friends baby shower last Saturday. Up until Friday night I still had every intention to go even though it was over an hours drive away one way. Why? Why didn’t I immediately say I couldn’t come like I would expect any other mother whose child is hospitalized to do? *
Yes, hospital stays have been an unfortunate normal in our lives over the past 18 months. I’m guessing we still have a few in our future as well. But it’s ok for me to be mad and upset about every single one. I can freak out every time my son is hooked up to tubes and out of my care for the night. I don’t want this normal and that’s ok too. So, we’ll hold out for the day when overnight stays really are a distant memory and marvel at how well we handled this unpredictable life.
* PS, if you are my friend who had the baby shower on Saturday, please know, these thoughts had nothing to do with you! I felt no pressure to attend. It was something I was wrestling with internally

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The education

My first post of 2015! I had such a blissfully relaxing Christmas break & birthday but now I’m in that early January bummed out stage. No better cure than jumping in and getting back to normal.
I never take my kids to doctors appointments. Honestly, I rarely even bring Jason with me! But, I had a checkup the day after Christmas & we’d already spent so many consecutive days together, it seemed natural the whole family would stay together. So we did! It felt like we had just sat down when I overheard a conversation between mother & daughter next to me. In fairness, they were talking before I sat down & I’m speculating about the specific details but here’s what I heard. The girl, who looked to be in her late 20’s seemed to be around 20 weeks pregnant & was sitting with what I assumed was her mother. They were going over a folder of information. It appeared that the folder contained some test results & the mother was explaining what the results meant. The mother was pretty animated & speaking a bit loudly so it was hard not to hear they were talking about Down syndrome. Of all the days for David to be with me! The snippets that I was picking up included, “Down syndrome, not for sure, amnio & results.” In fairness, none of those are negative words so I shouldn’t have been immediately on guard, but of course I was, especially with my precious son 10 feet from them. Jason & I kept exchanging looks and finally I said, “I’m going to say something to them.” I walked over and said, “Hi! I just wanted to let you know, we had a prenatal diagnosis in this office of Down syndrome with my son over there and I’m happy to talk with you about it if you have any questions.” The girl was very kind and said, “Thank you, this is all very overwhelming.” Her mother, was a little less kind. She immediately started preaching to me about the current research, how only an amnio is 100% but that it causes miscarriages and how blood work isn’t accurate. I was flustered because a) I wasn’t expecting that kind of reaction b) I’m not as educated as I want to be on prenatal genetic testing beyond my own experience and c) she wasn’t kindly asking me questions and trying to get first hand information. She was aggressive and her words had a negative tone. I felt like she was trying to educate me! I explained that we had received a positive diagnosis through my 12 week blood work – big mistake!! She was quick to remind me that there are no positive or negative results for the early genetic tests that are out there. She’s right; there are higher or lower probabilities. But, because these tests are under increasing fire and there’s been some new studies completely debunking their accuracy at all, it seemed she was using those as her touchstone. She kept telling me, “They’re only 40% accurate.” (Seriously, she said it 4 times) The only thing I could respond with was, “Well, it was 100% correct for us.” Again, the pregnant woman was kind & kept telling me how cute David was while her mother asked me if I’d had an amnio and additional follow up questions. I was kicking myself because I was trying to be calm and an advocate for my son and instead I was flustered and stumbling for words. I did have the presence of mind to tell both women that my OB’s office handled our diagnosis wonderfully. The mother almost tried to argue with me about that! She insinuated that the doctors were pressuring her daughter to get the amnio or terminate. I can’t speak for their experience or for every doctor in the practice, but ours was as positive an experience as we could’ve hoped for.
I’m no stranger to the shock and grief that comes with a prenatal diagnosis. And I’m an advocate that everyone should feel and react however they need to. But this experience in the office left me uncomfortable. I felt so bad for the pregnant woman who was being, it appeared, negatively impacted by emotional information. The ironic part is my OB’s office has my business cards in their lobby since I work with clients and their reproductive mental health. My business cards were literally within grabbing distance! Why didn’t I offer to have her contact me? Why didn’t I refer her to the Rocky Mountain Down syndrome Association? Why didn’t I tell her about the Down syndrome Diagnosis Network?
I want to be the calm, bold, knowledgeable mother that makes Down syndrome seems less scary. I want to be a quiet advocate for David. I want our experience to reassure people & not be reduced to stutters if I’m confronted.
Here’s to hoping all three of us women leaned something in the office that day.
Here are great sources of information & education:
http://www.rmdsa.org
http://www.dsdiagnosisnetwork.org

The Lucky Few

Here’s a little secret to perk up your day. If you search #theluckyfew on Instagram, you’ll be lost for hours in the joyful, cute, stubborn, funny and unique pictures of individuals with Down syndrome. I stumbled upon the tag early after David was born & I’ve used it myself a few times. Those of us who love someone with Down syndrome really do feel we’re lucky. We’re part of a secret club. Remember when I was desperate to be kicked out of that club?! My gosh how things have changed! I truly don’t know if there is a day that has passed since David was born that I didn’t feel lucky. Through the NICU stay and the surgeries, the PICU stay and more surgeries and this spring when we spent more time at the hospital than at home, one giant smile from my sweet boy & I immediately think, “Damn, I’m lucky.”
We are fresh off a month of thankfulness & counting our blessings and just beginning a month of hope and advent. I sit in awe that I have been entrusted with these little beings. I am overwhelmed at the responsibility and blessing that has been given to me. I know I wasn’t “chosen” for this role but man am I blessed to be inducted into the lucky few.

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Thankfulness: what we can handle

Day nineteen: I read an article today about suffering & what we as humans can handle. I’ve written before about the well meaning things people have said to us on our journey. Much has been kindly ignorant (emphasis on the kind). When something is uncomfortable or foreign, it can be easy to say the easy or cliche thing, simply because you just don’t know. I know I have said my fair share of ignorant things about topics I knew nothing about in my life.
The article today focused on one cliche in particular, “God won’t give you more than you can handle.” We’ve heard that many times over the past 19 months. But the reality is, sometime you do get more than you can handle. And it’s hard & scary & tough & you want to scream! But I’m willing to bet that there aren’t a lot of personal trainers out there who only give their clients what they can “handle” or teachers who only give their students exams that they’ll ace. Because fortunately, growth happens through the struggle. I don’t believe we were picked or destined to be parents of a child with Down syndrome or a strong willed child. I don’t think that we were already perfectly suited to be parents to these two. I believe we are working and struggling and growing everyday. I’m so grateful we’ve been given more than we can handle. What a blessing to be pushed and to survive.

Thankfulness: the joy

Day eighteen: Technically, I could write 30 posts about my children. But I don’t want to bore you. So I’m trying to mix it up a little & show all the little things about my kids that I’m thankful for.
Today, it’s the overwhelming joy that this little guy brings us & exudes. I know, “kids with Down syndrome aren’t always happy”. Then someone should tell David. He’s really almost always happy. What a joy he is to our lives! I’m so thankful for his happy nature.

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Thankfulness: the unexpected

Day eleven: For most of my life, my life has gone the way of most Type A people. Well, one of two ways: The way I want it or The way I planned. I feel like I often got what I wanted. Not in a selfish, whiny brat way but in a “I work hard, have clear goals & focus, so things are going to come together way.” For many of us Type Aers (it’s a word) life continues to go along that track. I thought I was one of the typical ones. But I can literally pinpoint the day that all changed: December 23, 2005.
That was the day I “met” my husband (I say “met” because I truly met him in 1994 as sophomores in high school, but the December 2005 meeting is the one that really matters since that’s when we started dating). Up to that day, I had worked hard, accomplished goals & made plans all on my own. From that day forward all plans have been made with someone else. I’m not going to sugar coat it & say I’ve gone along willingly or given up control gracefully. I’ve kicked, screamed, cried, whined & begged. So much of the journey has left me feeling like the passenger & for some who’s used to driving, it’s been difficult.
Today I looked at David and I thought for the millionth time, “I can’t believe this is my life.” I still can’t believe I am the mother of a child with Down syndrome. But I think this without the initial, “I can’t believe this is my life! Woe is me!” attitude that I had when we were first diagnosed.
There are so many aspects of my life right now that were not a part of my original life plan. And you know what? Thank goodness!! What a blessing to be surprised, to be shaken out of my comfort zone. What a treat to be this new version of myself that even my most ambitious plans wouldn’t have created. How awesome to be forever changed by the unexpected.

Thankfulness

It’s November, the month of thankfulness.  I’m the first one in the history of ever to devote an entire month to being thankful, right?

I have been in such a blog slump I decided what better time than this month to challenge myself to write every day?  So, on the first, no wait, the 3rd day of the month, I’m off to a great start!  Here goes . . .  my Daily musing on being thankful!

Day one: I am so darn thankful for my baby boy.  I’m thankful for lots more things but there are 30 days this month so I will write much more about all of those things.  And plus, this blog is kinda, sorta all about him so I feel like it just makes sense to start with the man of honor.  Seriously though, David has flipped our life around truly for the better.  It has been the most challenging time of my life and I lived in New York City post- 911 without a job for 4 months so I’m no stranger to a challenge.  I hope others will agree, our who family is all-around “better”.  We love harder, care deeper and judge less.  David is happy and dear and snuggly.  The list goes on and on and I could type them all but I’m going to respect his future 14 year old self who is mortified that I shared the details of his cuddliness with the world.  He’s awesome and we are thankful!

Day two: I am thankful for my home.  Yes, Jason, you read that right.  The home that I had no interest in purchasing.  The home that I cried the first day we wrote a check to start the buying process.  The home I have cursed as the anchor holding me back from packing up and moving to New Hampshire, South Carolina, California or any number of places I dreamed of spontaneously moving my family.  It has taken me four and a half years, but I am thankful for my home.  I am thankful my children are warm every night and I can watch them play while I cook dinner.  I am thankful that I can host dinner parties and study groups and birthday parties and welcome people into my home.  I am thankful that every time I am pregnant my husband indulges me in yet another painting session to freshen up and help me nest.  I am thankful that in spite of the craziness of our lives we have had our home as our cornerstone.  I am grateful for that small piece of consistency.

Day three:  I am thankful that Jason & I come from amazing, compassionate, supportive and caring families.  I don’t know what we’d do without them and I don’t say that lightly.  I have no doubt that no matter our circumstances, our families will always be there to help us because they have already done it so often in our past.  There is nothing like knowing you have a welcome place to land at any time and through any situation.  I know not everyone has that and I count my blessings!

More to come.  Happy November everyone!

The Daily Mail response

This being Down syndrome awareness month, I feel I have no choice but to come out of my blog-coma and continue to educate and dispel this ridiculous notion that Down syndrome is any kind of “death sentence”.

One month ago, my family participated in the Step Up for Down syndrome Walk in our town.  It was our second year participating and since I’m now a seasoned Down syndrome veteran (wink, wink) I was in a better place to observe and enjoy rather than grasp desperately for comfort and “normalcy”.  The weather was awesome, our supporters were amazing and David basked in the attention.  As I looked around at the participants, I realized there were a few distinctions.  I don’t know if there’s any other condition with such a physical representation of growth, change, education and awareness.  I broke it down mentally like this (disclaimer: this is my OPINION and in no way based on research; strictly observation and my own personal experience).

There seemed to be 3 distinct “groups”.

Group one: 25+ years old “Ok, you’ve been born with Down syndrome & we’re not going to institutionalize you anymore, but we have no idea what to do with you so you’ll have to figure it out on your own.  Good luck parents.”

Group two: 10-25 years old “Ok, you have Down syndrome and we’ll let you come to our ‘typical’ schools, but we’re not exactly sure of any programs or services that will best help you and we don’t have the resources to try.  Come join us, but still . . .  good luck parents.”

Group three: 0-10 years old. “Ok, you have Down syndrome.  That means you have your own unique set of challenges and skills.  Here are a ton of programs, resources, services, support groups, books and research that will help you.  If you can’t find what you need, let us know, we’re here to help.  Parents, let’s work together.”

I get that these are gross generalizations and I am in no way insinuating that there is no hope for older individuals with Down syndrome or that certain programs and individuals have not been working for the greater good for years.  It just seems to me that the younger kiddos with Down syndrome were truly thriving.  It was clear that there is a new generation of Down syndrome awareness and support.  One that promotes acceptance, encourages strengths and uses every resource in their toolbox to make sure that individuals with Down syndrome can be the very best they can be.  Just like every other child on the planet, kids with special needs deserve to have the opportunity to be the best they can be.  It may not be a rocket scientist or a neurosurgeon, but maybe it’ll be an artist or musician or teacher or policy maker.  I’d be pretty dang proud if David looks at me one day and says, “Mama, I love what I do and I’m good at it!”  Isn’t that all any parent can ask for?

I pity the British woman whose son was born in an era when Mongoloid was still an accepted term.  I can’t image she received any support or resources and I can only hope she did the best with what she knew.  My gut is that if she had been educated and used her mama bear instincts to fight for her son, he would be in a very different place today, and likely so would she.

So to all the parents fighting the uphill battle of autism, dyslexia, Down syndrome or other “disabilities”, I say, Fight on!  Give your children every single opportunity you can.  Search high and low to make sure each & every one of your kids reaches their full potential.  If at the end of our lives, we can say that our kids are the very best versions of themselves, doesn’t everybody win?