I’m growing ever more concerned about Cody and myself. On Wednesday morning I had a crying meltdown after driving way up north for an appointment for Stella, which I thought had been squeezed in before preschool that day but was actually squeezed in before OT yesterday. I completely forgot about her 25-minutes-away PT appointment on Monday until I heard my iPhone’s musical reminder, ten minutes prior to the start time. Stella had the meltdown for us that time. Cody accidentally convinced himself and his boss that a work event was today, but it is actually taking place tomorrow. We are exhausted and it appears to be catching up with us.
Like so many parents, we have no childcare support. No family within several states. We have a four-and-a-half-year-old whom we love more than anything but who does not let us sleep for more than four hours straight. Close to five years of severely broken sleep take a toll. (I believe you need six straight hours for a proper sleep cycle?) You can see it under our eyes, and some days, in our shortened patience. Less than ideal, to say the least, when you have a child who requires extra patience, understanding, and planning.
In order to afford musts and, well, luxuries, but also to give me something that is mine and not revolving around my daughter (for her sake and mine), I took a new job. I want to fund Stella’s costly therapies and possible private school and a kitchen that is not held together by duct tape, so I’m working 20 hours a week mostly from home. I hope to make it last, but if this keeps up, I’m not sure I can. We don’t have the affordable, high-quality childcare we need, and I’m not willing to leave her just anywhere–we tried a nearby drop-in preschool for extra work time for me and it didn’t work out very well for Stella. I want to accompany Stella at her weekly appointments (observing and participating when I’m not a distraction for Stella–it depends on the day), work and play with her each day at home, give her time to rest during the day to fend of double vision to the extent possible, and take better care of myself.
So, I’m feeling pretty crappy lately, to be honest. Stella has been more up-and-down as therapy progresses, which is to be expected. But just as she needs more support, our reserves seem to be rapidly depleting. While we feel we are doing our very best, we have to do better. We have to find support. The truth is I’m scared that Stella’s needs would not be met or that she would be treated unfairly if someone didn’t truly understand the situation, and I’m unsure of what the right childcare for us would even look like. Part of me knows I need to work and have breaks and part of me doesn’t want to leave Stella at all, because I want to give her the extra bear hugs and comfort she needs lately.
Frankly, I’m also dealing with some anger. I feel bad about it but it’s there. The anger is directed at people along the way who have been so dismissive of our concerns, stress, anxiety, and struggles. Who assumed if I just did X-Y-Z (presumably in line with how they parent their children), put distance between myself and Stella (as if I wanted her dependent on me), or just “relaxed” that everything would be fine. Overall we have it pretty good in life, but we have not been dealt a typical parenting hand. This was recently validated in a big way, which was both sad and a relief. What I have learned from all this is that judging other parents is absolute, 100% bullshit. I’ve done it here and there on this blog and I will never do it again.
However, I can step back and think about all the people who have supported me through the journey so far, with playdates, encouraging comments here, and special gifts from family for Stella, which mean a great deal. I get that it’s a two-way street. I have been very consciously extending support to others, lending a hand when I can. It is like magic in terms of improving one’s mindset.
Cody, Stella, and I chipped in with some volunteer work that a friend’s family routinely does at a downtown emergency shelter for homeless mothers and their children. We helped provide and serve dinner, and it gave us some much needed perspective. I was moved by how the people staying there, who must be so terrified and living in absolute limbo, noticed Stella’s difficulty and upset, and reached out to her. Stella listened shyly to a superbly kind pep talk from one woman. We received empathetic smiles and not judgement. On the way out, Stella received a kiss and hug from a four-year-old girl living in the shelter with her mother until they can find placement in a longer-term shelter. I could see that this girl, the same age as Stella, probably had some developmental delays, and clearly, given her family’s situation, was not able to receive multiple therapies to address them and maximize her potential. That sweet girl.
We may not have much support, but we do have a home and employment. We can get Stella the support she needs to overcome her challenges and flourish. Stella’s physical and occupational therapists have noticed some postural improvements in Stella already! She can now do some of her reflex integration exercises herself. We have been able to stock our home with swings and tools and sensory retreats to better meet Stella’s needs. I can also see that warmth and understanding is out there, even in the most unexpected places. There is hope.
In terms of exhaustion and support, I do not expect to solve the whole problem, probably ever. But I can at least find a reliable, warm, thoughtful babysitter for once-in-a-while. We’ll start there.
The Life and Times of Stella 
Oh Amber, I had no idea you were without childcare! I would be a raving mess if Heath weren’t in a public preschool 3 mornings a week (integrated kids with and without disabilities). We also have 6-7 hours of respite care weekly through Medicaid Waiver – maybe easier to get in MT but doable with a diagnosis. Do you have Childcare Resources out there? We don’t met their income cutoff but I’m sure they would work with us if we were desperate. Heath needs a break from me too! 🙂
Shoot. I think I unintentionally misled. Stella is in nature preschool 3 times a week for 3 hours at a time. That gives me 9 hours to work at a coffee shop (it’s too far away to drive home during school), leaving 11 hours to work with no care. I am still a mess despite those 9 hours. (I guess I think of preschool as different from childcare though they are really the same.) Her appts are sprinkled throughout the week so it’s just such a tough schedule in terms of fitting in MORE time for childcare. And her fatigue/double vision kicks in mid- to late afternoon, complicating things further. I will look into the kind of situation you’re describing. Sure would be nice. Glad you have those 6-7 hours!!
Amber I think you are doing amazing. Our society and culture are pretty unsupportive of parents. And if our children need a little more in one way or another – or a lot more – it’s that much harder. You do need time apart and Stella needs it too, even if it is hard sometimes. And you need sleep! My daughter barely ever slept through the night until recently and she’s five. We were going crazy. The last month she finally has been sleeping through the night more often than not and it makes such a difference. There is an article that really helped me. I’ll find it and figure out how to forward it to you.
This is the article. Amanita was already in her bed, but what we did was the part about changing her bedtime routine and showing our love and support when she got upset. Feel free to email me if you want to know more. Good luck with everything. Stella is lucky to have you, and vice versa of course! Hope you get a good babysitter because that will help too. If you are near a college maybe a student in early Ed, special Ed, OT or something like that.
Thank you so much, Karen! I just emailed you. 🙂
You’re a great mom Amber! On the sleep side – we met with Ann Keppler (of first weeks fame) when we were having sleep troubles. It was helpful to have a neutral 3rd party help us come up with a plan we could do to change the pattern we had fallen into. Let me know if you want her email.
Yes! I know Ann! I communicated with her during Stella’s early days about sleep and nursing. She is so wonderful. We did something I used to think was ridiculous–we hired a sleep coach. This was when Stella had turned 3 and her sleep really deteriorated (along with her vision–coincidence?). It did help! But since Stella’s facing these extra challenges that we didn’t really understand then, we now realize why it’s so much harder for her to sleep enough. I hope that addressing Stella’s sensory needs and doing all the therapy will naturally lead to better sleep. We’ll see. I totally agree that sometimes an outside opinion is needed. It just gets so hard to see sleep habits and routines clearly when you’re exhausted. It’s a viscous cycle! I know you’ve had it tough in this area at times. I’m glad Ann was helpful!
P.S. Thanks but I don’t feel like a great mom most of the time. I see all the fun and amazing things you and your guy do and feel envy! You are a GREAT mom.
Amber, I know in my heart you are a stellar mother. I wish you had family nearer to you to help so you could recharge and meet all your family’s goals. Your situation right now sounds so hard. We also don’t have family near us, but we don’t have the challenges you face either. I feel for you, and I know you’re doing an incredible job. Hang in there! Hugs!!!
Whoa! WordPress allows comments even if I don’t sign up 1st! I hate to change my blog site (again) but this is what I wanted all along! Hmmm….
Anyway I just wrote you a mini novel on fb and thought that I should be writing more on my blog! Ha, then I remembered that you have a blog! I’m waaaaaay behind. But it is so funny, we are so on the same page. I didn’t expect this entry to take the turn it did (shelter). You know I will forever have this war within myself! I feel sad, mad, self-pity and more due to our personal situation but then just as I am really hanging my head low, I see something that stops me cold in my tracks. If anything it does offer perspective but keep in mind that while we should remain grateful, it is human to have emotions and healthy to feel them. 🙂