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 pride

I know this blog is about David but today I’m taking a time out to talk about my other pride & joy. My first born, the daughter I dreamed of but never allowed myself to truly hope for, the girl who drives me to tears, fits of giggles, forces me to get alone time by locking myself in the bathroom but rush to school every afternoon to pick her up. She is the most intense, stubborn person I have ever met and takes after her dad so identically sometimes I don’t know what to do with either of them!
Lately, I’ve been focused on the “difficult” parts of her personality. She is defiant, she is stubborn, she is moody, she is intense. On a good day, this makes her fun & full of life. On a bad day, I have no choice but to drop her at a friends and wander aimlessly around Trader Joes with a Starbucks in hand just to decompress.
Ella had been asking to ice skate for awhile. There was a rink that was having a DJ, prizes & ice skating day so I decided to bring her and David while Jason was at a men’s conference at church. As soon as we got there, I got nervous because I realized I had to stay with David and so I couldn’t skate with her. She was excited to try even without me so we rented her her skates and helmet and put her on the ice. At first she clung to the railings while David and I walked alongside her. But after 10 minutes she started getting more comfortable and started letting go. She would try and skate a step or two at a time before she would cling to the railing again. After one loop around the ring, and her hanging onto the bars for most of it, I thought she would be “over it”. It was lunch time, I was hungry and so I told her just 10 more minutes. Ten minutes turned into hour and a half! She loved every second of it and I couldn’t get her off the ice. By the end she was skating 10 to 12 feet distances all by herself, not hanging on to anything! I was so damn proud, I literally couldn’t stop smiling. The entire day she kept turning to us smiling and saying “Mama, I’m doing it!” I don’t know if I’ll ever get her sweet little voice out of my ears and I pray I never do. She was full of such exuberance, such excitement, and such intense determination. By the end, she was trying to practice turning. She was amazing! There were times she cried, times she got frustrated, but every time I asked her if she wanted to stop or come back to the rail, she said no and kept right on trying.
This weekend, I saw another side of her spirit. Determination. I don’t think I realized how determined she is because I always saw it as defiant. My heart was literally bursting with pride and I pray that from here on out, when she’s being difficult, I can remember that it’s maybe a little more about determination and cut her some slack.
I’m so incredibly grateful I saw that side of her. More importantly I’m so incredibly grateful I noticed. What a blessing to her to have her mother see her not as difficult but as disciplined. I’ll take a disciplined child over a genius child any day (although I happen to think she’s both). I thank God for my “spirited” daughter and the humbling lesson in seeing the positives in people instead of the negative. Go Ella Grace!

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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