The week

It’s been a rough week for me this week. I think between the busyness of appointments, results, parenting, home schooling, home keeping, playing and trying to rest, I’m a bit overdone. Before I had kids, I almost never cried. Now, my body is trying to recover from  7 pregnancies in 6 years while nursing a baby and running on very little sleep for 4 months, I cry pretty much daily for one thing or another. Gideon is doing great. We are so blessed and thankful for his health and progress, but on the other hand, there are little things that I take as ‘bad news’ that feel like defeat or steps backwards and it’s disappointing for how hard I work to do my best for him and the boys. But there is more than Gideon to focus on in the family. I try to take care of myself so I can take care of everyone else, I suck at pouring into my marriage right now have many opportunities for growth to pour into my marriage  :) and have 3 other kiddos who need just as much of me as well. Elijah is a bit older, a better helper and more independent but he needs me the most with his school work because he is doing more new learning right now than tracing letters or making sounds like Moses may be working on and can do a little bit on his own. Solomon is 3… I haven’t even started and don’t plan to anytime soon. Parcheesi, Uno, coloring & painting are his ‘school work’ for right now and I’m totally ok with that.

Wednesday was an exceptionally rough day for me. We have had some challenges at home outside of Gideon and I just don’t have the capacity to handle much extra these days. I cried my way to co-op after struggling during the morning  and missed the first hour of my class. Solomon was also absent from his class as he was sitting in a time out with me hiding in a separate room because  of his behavior. I sat feeding Gideon and just let the tears flow trying to gain the motivation to go pull the kids from their classes and bail out and go home for the day on our last day of school for the semester. I was found hiding in the time out room sobbing with Solomon at my feet by a friend who was popping in to say hi and drop something off for me and took a look, dropped everything she had in her arms and came to sit with me and talk with me. We talked, she encouraged me then she took Solomon to class for me after his 2 teachers had come looking for him. Then another friend appeared with a hug, a listening ear and a lot of encouragement and understanding for me. I’m so glad I didn’t get the motivation to pack up and leave because it was good for me and the kids to be there. Until it was time to go, then I could have used an extra hand to help me get Solomon to the van. Again. Then my migraine kicked in on the way home. We arrived home, Solomon took his throne on the time out seat and the other 2 kids happily sat down in front of the tv to watch a show while Gideon and I laid down to rest.

Lately, I feel like every appointment I take Gideon to, I get more ‘bad news’. I often cry myself home from any appointments we have, upset that it’s more bad news resulting in needing to schedule more appointments and consider more procedures, etc. I think maybe I’m making up for my first 40 years of not really crying by doing it so often now. Ha. .There are appointments I’m intentionally waiting on scheduling right now just because I can’t take anymore bad news so I’ll avoid going all together (and they aren’t critical things that need to be scheduled immediately, so I can). When I cried myself home from Children’s last week, Bo said it wasn’t bad news, we gathered information about how to better care for Gideon. I said it felt like bad news. Just like our SPIO suit fitting this week, I felt like I got more bad news about getting him fitted for a helmet and custom making a suit to fit him and cried myself home from that appointment.  We have therapy every week to work on Gideons’ core strength and head control as well as any feeding issues and developmental things that need to be addressed (hands to mouth, grabbing for toys, rolling over, etc). I really like our therapist who comes to our house and usually learn something new each week about how I can better care for him. I often get sad at seeing how slow the progress is with him… he’s almost 4  months old now and still can’t even really hold his head up yet or withstand tummy time for more than a minute or so. Yet, I do see progress every week in other areas and can report to the therapist what we focused our work on for the week and what areas I’ve seen improvement in. While working with him daily, it almost feels like there are no changes, I am seeing him getting closer to reach milestones that most babies may reach at 1 or 2 months old and I’m getting really excited for it.
Then we had his therapy session. We reviewed the findings of his swallow study as well as how the SPIO suit fitting went and my therapist apologized for both.  She encouraged me from both standpoints about how to proceed with his feeding therapy as well as the SPIO suit and a helmet and just made me feel so much better about both things and others as well. She had solutions for all the obstacles that have come up and encouraged me how to better advocate for Gideon with some of these things to reach our desires for him. Thankfully, her and I have the same goals and the same ideas of how to reach those goals although his in patient therapist has different plans. Then we had our hour of therapy and Gideon ROCKED IT.  It was his best therapy day ever and she was even surprised at how well he did and how well he is progressing and gave me a new seat to attempt to have him try for 1 minute per day if he tolerates it and is stable in it. Hopefully soon you will see cute pictures of him in the fancy new seat the therapist is letting us borrow, as well as his tortle hat that he finally mostly fits in. I’m so glad the therapist had other ideas and possible solutions and actually totally disagreed with what his in patient therapist had told me regarding his care for a few different things and was completely and totally on my page with what I desire and feel is best for his care. I’m not sure if it’s because the in patient therapist usually only works with babies who are in patient in the hospital and it’s a little different when you’re at home or she is more conservative and our outpatient therapist is a bit more liberal, but his cardiologist seems pretty liberal as well so the 3 of us make a pretty good team in pushing for progress safely and trying new things for his care. After the appointments Gideon has had the past 2 weeks, I was just really discouraged and sad at the results. After therapy last week, I was totally empowered and encouraged that we can still plow ahead and make adjustments as necessary striving to reach our goals for his development and he isn’t doomed and we’re not ‘in a conundrum’ as one caregiver told me at one of his appointments with no solution to the problem. Apparently, I just need to find a new care provider when I end up with someone who doesn’t understand his condition, his size, or the timeliness of his situation wanting to reach certain milestones and make some developmental goals prior to his next open heart surgery which is possibly going to be in just 2 short months.

It surprises me how I used to be such a planner. I could literally have every detail planned out a month in advance with everything lined up and set out and ready to go for a whole month with nothing left out or forgotten. Then it got down to weekly planning, more and more kids added and weekly became every couple or few days.  Where I’m at now, it’s basically hour by hour. My months have turned into hours and I function literally about 3 hours at a time now. I don’t know what’s for dinner, I don’t know what we’re doing tonight or this weekend or next week. Nor can I remember what we had for breakfast today or what we did yesterday. I meal plan and write out the menu but I have no idea what it says until about 5pm which isn’t helpful when stuff is in the freezer and dinner time is at 5:30pm. I’m still not used to functioning only 3 hours at a time and look forward to a time when I can look ahead a day or 2 or 3 and not be overwhelmed and feel like I’ve got it handled and we are set up for success for the next day but I’m thankful I can take the time as it is and sit in the moments that I have as rough or as easy as they come and just be. My house is often a mess, it looks like a bomb went off with school stuff everywhere, 6 baskets of spilled out clean laundry across the living room floor with the play mat and Gideons’ new seat, backpacks, toys and more toys, blankets and pillows strewn about but whatever. Dinner is often 5 minutes ago when I realize I haven’t started it yet and Gideon is up for his 6pm feeding early so I get him situated, make dinner real quick then feed the family while I feed him when it’s done. But it’s ok. My cheeks were crusted with tears from the all day flow on wednesday and I could feel my skin pull when I moved my head from the crusty tears all down my whole face. But bedtime comes, hopefully sleep will ensue and tomorrow will be a better day. Everyday. As rough as it was, I’m still thankful for all the blessings. God puts the people in my path who could help me, encourage me with a hug, a listening ear, some advice or a LOT of understanding without judgement. And the hope for new mercies tomorrow to do it all over again just a little better than I did today. God also blessed me with the cutest sleeping babies in the entire world and I’m so thankful they don’t stir when I go in to take pictures of them snoozing :)

Prayer requests right now are for strength for Gideon. We see the pediatrician and the cardiologist next week for him and I’m excited and scared for both appointments. He NEEDS to have gained weight and I’m afraid he may not have… I don’t have a scale to weigh him here anymore. I really, really like both his pediatrician and his cardiologist and am always very encouraged by both of them so I’m really looking forward to them. Please pray that Gideon has gained weight and that his muscles develop and grow stronger and stronger each day! We could also use prayers for our ‘opportunities in marriage’ and perseverance to keep our focus and direction towards Christ.

Love & blessings! Kari


One Reply to “The week”

  1. Prayers continue for you and your family, Kari. As I’ve said before, I can only imagine what you are going through and how frustrating it must be. Love and hugs for all,

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