It’s been a rough couple of months, since COVID-19 began sweeping through the world. Our family has followed the guidelines of our state closely. We have no idea how our daughter Elsa (age 8, who has WHS) would do, if she got COVID. She’s been hospitalized numerous times, for operations and seizures, and one of those visits was for respiratory trouble. Out of fear of the unknown, and a desire to help keep all vulnerable people in our community safe, we’ve played it very safe.
That means we are going on about three months of no respite. The first month was OK. I was in survival mode, frankly, and just felt at peace to have everyone I love most safe and under one roof. Then about Mother’s Day, I hit a wall with remote learning, which coincided with general fatigue from cooking, cleaning, schooling and caring for Elsa and my other two children (ages 6 1/2 and 5) around the clock.
Elsa, my oldest, is 50 pounds and getting so big. Her progress with augmentative communication (PODD and her Accent 1000) has been incredible. But she’s not walking quite yet, and needs to go to the bathroom every 45 minutes to avoid accidents. The lifting I’ve been doing is taking its toll.
I have spent time sprawled out on my bed (crying) and laying on the floor of my living room (crying). Not pretty, let me tell you. But it’s been a necessary and unavoidable release from the pressure and weight of it all. Instead of reaching the end of my mental and physical strength every few months, it’s been happening weekly, sometimes daily.
It became apparent recently that we need (I need) help. But who? Like seriously. Who. We have great, dependable sitters. But none of them are presently particularly low risk. And when I started looking into expanding our circle, I found that all of our new babysitter prospects were already caring for four or five families. I couldn’t handle exposing Elsa. When I stack it all up, I know that shortening the prolonged physical and mental tax on me would never – could never, EVER – be worth the gamble of her life. Yet, I find myself breaking down at simple questions…
“How are you doing?” (Not great)
“What are you doing for respite?” (Nothing, because I can’t)
Meanwhile, others close to us have been branching out, as our state has gradually opens up – bringing sitters in, traveling. Not just “doing things” but… recharging, refueling. Experiencing breaks that allow them to return to their families brighter and stronger. Then I look at my own gas tank. Fumes. Nothing about being a parent of a child with substantial needs is easy. But this? It’s a twist in the heart, reiterating yet again how careful we have to be. And now we have to be separate just to be safe.
Separate, again.
We have found moments of joy. Lots of them. There have most certainly been blessings. In fact, you probably wouldn’t know how hard it’s been unless you ask us point blank.
Our girl is healthy. Our girl is strong. And we are together. These gifts are not lost on me. I’m just tired. To all the other tired moms and dads and caregivers out there, I hope you are finding ways to refuel, somehow. It’s hard to know how we will one day reflect on all of this, but here are a few of the moments that I hope overshadow the low points along the way…
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Dear Anitra,
I totally can understand how you are feeling. We were also really strict with “the rules” until the last couple weeks. We hadn’t had anyone else watch the girls, but then we decided to have Jim’s mom (my mother in law) take them for an overnight. It was a relief, but of course you are right back to the grind after it is over. I am exhausted, but we keep trying to give each other breaks. Of course, my husband works but with him working from home, it saves him two hours of commute per day. You do an amazing job working with Elsa on PODD devices and potty training. I am just not that good with the speech therapy stuff, so I feel she is falling a bit behind there (damn mom guilt) and we don’t even have potty training on our radar. You are seriously amazing, momma! 50lbs! Paige is only 30 and I often wonder just how I’m going to do it. Keep on cherishing those highlights!
Elsa you are getting so big. Hugs and kisses from Marshall and his mama. ❤️
Hi Keely! Oh gosh, it’s so nice to have family nearby. I wish we were a little closer to ours. We’ve made a trip to see both sides and those have been nice on lots of levels. You are so right, that mom guilt is a killer!! Of course, there is always something more I feel like I could be doing. But our best is good enough, I really believe that. The highlights are there. Elsa blows me away. I just wish I had more to give than I do right now. Would love to see you guys soon, when it’s safe to do so!
Hi Christia and Marshall! Elsa’s growth was kind of flat in January of this year, so we upped her food. She took off! I want her to be strong – but it’s a lot more weight. With a few breaks throughout the day, I really feel like I’d be stronger to help her. We shall see what the rest of 2020 brings. Sending our best to your family!
You are doing amazing with Elsa (& the rest of your busy family & life)! Taking those moments to cry and release your tiredness and frustration are very healthy. I’m Clara’s grandma and we were finally able to give some much needed breaks to her mommy and daddy around the end of May. It was so hard to decide between helping and keeping them safe since Clara is a high risk child too. Stay safe and stay healthy! Better times are coming. I hope you get some relief and some “alone” time. I know that’s few and far in-between! Kudos on the potty training too!! That sounds so physically exhausting. Clara is almost 4 and weighs about 33 lbs; I can’t imagine lifting much more as often as you do! Kudos, momma!!!
Oh man, thank you Denise! It does feel good to release the tension. I’m conscious that my girls are watching how I handle stress. I know it’s not good to hold it in. They’ve seen mommy super sad a few times recently. My younger two are starting to help a bit more with chores and cleaning up, if I remember to ask them to! Better times are coming, so true. Elsa still wears pull ups, but sometimes we go almost all day without accidents. She does NOT like to be wet, and will hit herself a bit if she’s about to go, or has just gone. I wish the cue to take her to the potty wasn’t self harm! We’re working on that :o) I hope Clara is doing well – I bet it felt amazing to see her!!
Dear Anitra,
Thank you for your honest post! You are doing an amazing job. I think we all need reminded of that from time to time. Our Bethany is almost 5, she’s doing amazingly well and we are head over heels for her…that being said I understand your exhaustion and your tears! I will be praying for you. Mathew 11:28 says ‘Come to me all you who are weary and heavy burdened and I will give you rest…’ The Lord loves you and Elsa and I know He entrusted you with her because He knew what a wonderful, loving mother/family you would be to her! ((Hugs))
Thank you for your prayers, Kelly! And I’m feeling those hugs! We know the Lord is with us – we feel it and see it everyday. His love covers Elsa and our family in beautiful ways! One huge blessing has been the adaptive bike that we received from Ambucs, right at the start of the stay-home order. We ride it every day – it’s so awesome to have that resource and positioning option. It is wonderful to hear that Bethany is doing so very well – that brings me so much joy!!
HI my name is Patti and i have custody of our great-granddaughter Hadley Rae 6yrs old and 35-lbs, who also has an immune system that gets compromised very quickly. These past 3 months have been exhausting as we also can not let her near anyone. The guilt is the worse, not feeling like you can do all that her PT, OT, AND Speech Therapist can do for her, as none of us our trained as they are.So she also is regressing. She is the joy of our lives and we do entertain her alot, with daily walks, using her stander, gait trainer and floor time. But not having the help to get a break puts a toll on our physical and mental state. So my heart goes out to all of you who are also going through this. God only gives us what we can handle, that’s what i keep saying to myself, and Hadley is worth it.. Hope and prayers for the best for everyone.
Hi Patti – thanks for sharing about how things are going with sweet Hadley Rae. It is impossible to replicate all of those supports. I know just how you feel. A slide, of some degree, just can’t be avoided. But you are SO right – there is still so much love flowing. And all these shared days are bringing us even closer to each other. Bless you and your family!
Hi Anitra! I was sitting here thinking of Elsa as I was feeding Bethany her breakfast and I remembered you mentioned that Elsa isn’t walking yet…Bethany is not walking independently but can get all over the house with her walker. It’s just a typical baby walker that I found on Amazon that my husband and Bethany’s grandparents helped modify. I wasn’t sure if it would be anything that would help Elsa, but we actually ordered 4 of them and 2 are still in the box! I would be so thrilled if it was anything you would want to look at on Amazon and if you think it would help Elsa I would gladly ship it to you. I will try and post the link if you want to check it out. I hope that you are all doing well!
Hi Anitra
Yes raising these special gifts from God is not easy and yes it’s absolutely worth every sleepless night. Every moment of tears and all those many moments of laughter. I understand those days when I feel like I just can’t do this and those other days when I feel that I am on top of all of this and no worries !! Now 22 years later my Joseph has grown and progressed to all he can be and that is incredible. Yes Anitra all worth it and know your not alone. We are all out there on the front lines with you. BTW Hadley is one beautiful little girl and sounds so advanced !!!God bless you and your family Diane