Highs and lows

Every relationship has highs and lows. My parenting relationship with Lauren is no different. I struggle so much with feeling like I'm enough for her, like I'm the mom she deserves. I know I've shared this before, but usually on the hard days, the days she might not love me, I know that I love her enough for both of us. Obviously that's easier said that done and there have been many days I've shed tears over what that looks like on those hard days. I end up feeling so defeated and it makes it hard to even try and engage with her. It's hard because a lot of times lately she's not necessarily physically hard (other than the fact that I can't pick her up so if she drops/flops I have to wait it out) but it's hard because she's just unkind. Lauren is a verbal processor. She is a stream of consciousness type of thinker and she just says everything that comes to mind. I'm so thrilled that her verbal skills are so high, I feel like I constantly need to add this disclaimer.

It's really hard to hear your kid say, "I not love you" or "My brain tells me to tell mom she's ugly" over and over when it's accompanied by spitting, hitting, defiance, etc. This is toddler behavior...and Lauren is 9. It’s a huge reminder to me that she is not, cognitively, like her typical same aged peers. Generally, we can't go places on those days because I know it will be a total shit show. Yesterday I was hoping to take her to a nature trail she's loved in the past. BUT it requires an enormous amount of patience on my part and cooperation on her part to make that work. Yesterday was NOT our day, so our big outing was the grocery store. She was really great while we were there! But the process of getting there (getting her braces and shoes on) resulted in tears from both of us. I wasn't feeling great yesterday (chronic illness sucks) which was, I'm sure, a contributor to our bad day. I end up feeling like a failure at life on bad days because I feel like I'm failing my kids, I have no fucks left to give and don't want to spend time with my husband, I don't sleep well because I'm stressed. As much as Ryan loves to spend time alone or online with his friends, I know he needs more from me and I feel so guilty. It's like a carousel spinning too fast that I can't climb down from.

Today she woke up super happy and we've honestly had a fantastic day. We went to the grocery store...again. I'm incapable of remembering everything on my list in one trip! My sister and niece came over, the girls played outside a ton. Lauren has been super affectionate and sweet. I love days like this. I'm so thankful it was a good day. This weekend is Easter and we have fun things planned so I'm super hopeful we get some good days. We're celebrating my nephew's birthday on Friday. Sunday is Easter. My mother-in-law is coming home tonight for a week and I can't wait to spend time with her!

The kids are home on spring break this week which of course makes me terrified for summer. It will be my first summer working part time so I'll be responsible for my kids all day 5 whole days a week. This probably seems like a ridiculous thing to worry about to my stay at home mom friends...but I am nervous! I'm planning to make a schedule so Lauren and I both know what to expect and hopefully eliminate some of the whining (from both of us, LOL). I don't mean to seem unexcited because I am! I went part time at work mostly because of my health, but getting to spend more time with my kids was a huge factor in the decision! I just have so much self-doubt.

Here's a picture to document our great day! This was taken mid dance party in the driveway thanks to the Moana and Frozen 2 soundtracks!

And.

 I'm learning the importance of "and".

We got back from vacation in Florida this week! We had a lot of family time, got to see both sets of grandparents, had perfect weather, went to Disney World (can't wait to go back), AND are glad to be back home.

AND. Navigating this special needs parenting is proving to be a journey full of ands. This life is hard AND rewarding. Lauren is adorable, perfect, smart, AND has significant delays. I'm good at this AND I'm failing miserably. Lauren is extremely challenging to parent AND I'm obsessed with her. The ands often, but don't always, exist at the same time. 

Vacationing with kids is hard. Vacationing with kids who have disabilities is harder. It's the same game with a different set of rules and you don't have the home-field advantage. We had a total blast, but wow, it was really challenging! Behavior was a huge challenge, which I expected. Lauren did great mobility-wise and only fell twice while at Disney getting off of rides. We were so thankful for her adaptive stroller, the trip would obviously not be something possible for her without a mobility device. She LOVED the roller coasters!! I should've expected that, but didn't. Ryan had a blast and did really well, though he does not love rides like Lauren does. He had some anxiety challenges (TSA at the airport is a nightmare) but he had a great time and I'm so proud of him every day. I already can't wait to go back again and enjoy more family time. I've always said it's not a vacation if you have to take your kids (it's a trip). But honestly this felt mostly like a vacation and I loved it.

We're currently trying to get Lauren a waiver to be able to get Medicaid and some additional support services. In our state, Down syndrome is not an automatic qualifier. There's a Medicaid program we've used in the past that covers certain diagnoses (Down syndrome isn't one of them but some of the accompanying challenges are), but it has a fee schedule that ends up pretty costly for us so we've only used it the years we have big stuff (heart surgery in 2012, foot surgery and new adaptive stroller in 2018). We're trying to qualify now through a program I thought was only for more disabled kids. But writing down all of the areas Lauren requires assistance was a huge wake-up call for how far "behind" she is than her typical peers. I hate using the terms "behind" or "delayed" because I can't and never really have compared Lauren to a typical same-aged peer. For me it's like comparing apples and oranges: they're both fruit, but my expectations are completely different for each. Lauren has a total of 11 specialty care providers. That's not including therapy like physical therapy, occupational therapy, or speech therapy. Between premiums, co-pays, co-insurance, and deductibles (for both visits and treatments, equipment, etc)...she's definitely an expensive kid. Qualifying for this waiver program would allow not only Medicaid as a secondary insurance to help pay for these things, but we'd also qualify for help paying for respite and other community supports. We'd be able to devote more time to Ryan's needs and give him 1:1 time he desperately needs. 

In many ways Lauren is just like any other kid...and in many ways she isn't. Both are true. Both are valid. I'm learning, slowly, to live this journey in a way that honors and validates the ands.