It has been a month since Lydia was diagnosed with Rett Syndrome and I’ve been having some thoughts that I want to write down.
When Lydia received her diagnosis, the thoughts that I shared were completely honest. I felt so much peace about everything. And I am so grateful for that. I don’t know if I have ever had an experience like that. The best I can do to describe it is that it felt like my heart and spirit were just in a constant hug. It was incredible. And I am so grateful for that special time to just let things settle in such a safe, space.
The Switch
But as Marlin says, “good feelings gone”.
Okay, maybe not as bad as that, but that is a phrase Mark and I have jokingly said to one another the last couple weeks. For about a week and a half – things were so wonderful. I knew it couldn’t last forever {as much as I wish it could} but reality is starting to hit and it’s been tough.
I think the switch happened when we met with Lydia’s developmental pediatrician. I felt like I had done TONS of research going into the appointment. I had printed off all of the “lists” of things to talk about with our pediatrician about Retts and researched local doctors in the different specialties that Lydia would need to be seen in and…well, it didn’t go well.
Mark keeps teasing me that it went wrong with the very first question, I asked “how familiar are you with Retts?” This is the #1 question ALL of the lists recommend you ask and let’s just say, our doctor didn’t seem to appreciate it. Things got prickly real quick and I still stand by that it was a perfectly acceptable question to ask. Retts is classified as an extremely rare syndrome and so I think it is totally acceptable to ask how familiar she was. Can you tell this is a sore subject? 😉 Doctors and their egos…
ANYWAY, the appointment left Mark and I pacing in the back of the parking lot really confused. We thought this appointment was going to help us put the pieces together and give us some sort of direction, and we left more confused than before. It was discouraging and confusing.
Support System
A couple days later, we received our package from the Rett Syndrome Foundation. We are so grateful that this exists. It has been our go-to place for everything. SO MANY helpful resources. It also came with a whopping 600 page handbook which is…intense. It is something I have to take in tiny bits.
Then, someone from the foundation reached out to me and asked if I would be interested in joining a group for newly diagnosed families. So we joined! It’s on Facebook which is nice since it combines people from all over. It is only for families of diagnosed girls from the last two years – so everyone is in the same stage.
This group is so amazingly supportive. I love how everyone uses their child’s names and people really seem to WANT to connect. It is such a personal, wonderful group. And it has been so nice to ask questions and get feedback from people that “get it” and have gone through similar things.
Lydia is definitely one of the youngest – I would say most of the girls seem to be around age 4. And there is a variety of abilities – some can walk, some can even say a few words. So even within our group there is a lot of differences.
But as supportive as it has been, it has also been REALLY overwhelming. It’s like a constant parade of posts about different surgeries, procedures, appointments, communication devices, struggles with doctors and therapists, etc. It’s A LOT to take in. And some days, I just have to tell myself I can’t look at it. It’s like a continuous reminder of ALL of the things that can happen {and many of them most likely}. It’s hard. So grateful for it – but it’s hard.
Struggles
The hardest thing {and something I have not gotten to at all on the blog} is our need to move. Every appointment we are reminded of the services Lydia could be getting but can’t given where we live. Our area is simply too small and lacks the resources we NEED. For example, Lydia needs feeding, speech, physical, and occupational therapy on a weekly basis. Most girls seem to have therapy at least three times a week. Lydia gets feeding therapy once a month and physical and speech twice a month {at the same time}. She needs so much more.
I think every parent wants to give their kiddos the best chance to succeed and Lydia just can’t do that here. And I am not trying to speak bad of Wyoming at all, it is simply the facts, and the facts we are being told from our therapists here. There are so many thoughts about this subject but that is for another post.
This month has just been hard. Lydia is struggling right now in ways. She is so happy and sweet but she needs help and it is really hard to feel helpless. The biggest concern right now is Lydia’s GI issues. For about two weeks, Lydia was throwing up A LOT. And the thing is, Lydia rarely throws up while awake, it is while she sleeps. But every nap, every bedtime {sometimes multiple times} Lydia would throw up day after day after day. The poor girl was exhausted. And it’s so hard not being able to communicate. I don’t know if she is in a constant state of nausea or discomfort. My heart just hurts for her.
One day, Sarah had dance practice. I try and let Lydia sleep as long as possible before we have to go. Sarah and the boys were all getting in the car and I went into her room to get her and she had thrown up again. I didn’t have time to put her in the tub, so I quickly grabbed some wipes and cleaned her up as best I could and ran Sarah to her dance. I had a small window to get home, get her cleaned up, and pick Sarah back up. But as we were driving back home, Lydia threw up again in the car so now it was on her AND the car seat. I got her inside in the tub and then quickly had to clean up her car seat before picking Sarah up again. And as I was driving home, I just couldn’t help but get teary-eyed. This was just an hour of my life and look at what it had become. It just felt so overwhelming.
I decided I need to change my baseline on what makes a good day. Because every day lately has felt like a really hard day. And I don’t want every day to feel that way! But things are going to be a struggle. I am sure there are going to be many, many more days and moments like that one.
There is a lot of talk right now about finding our “new normal”. And that is what we are trying to figure out on a much more personal level. It’s going to take time and that is something I am learning to accept.
Peace
I do have to add, after a really long month I did find some peace. Earlier this week, I was reading my scriptures and had a big slice of humble pie delivered to me. But it was given in such a way that felt really inspired and motivated me to be better – the Spirit is good at that 💛.
I had two very strong impressions. The first is that I need to stop thinking I am “owed” certain blessings. The last year has been really hard. Do you remember Satan and the Spirit on my shoulders from my last post? This has been a BIG thing Satan has been feeding me – that given everything that is happening right now in our life, we deserve to be blessed in certain ways. And I do think blessings will come, as I continue to show up and do my best and all of those other things, but I don’t get to pick what those blessings are OR when they happen.
The second is, that I need to stop living for the future. I have been guilty of this for a LONG time. I don’t know how many times I have thought, when x, y, or z happens, then we can move forward. It’s a problem for me. And I have said that a hundred times this last month. If we can just get a job and move to x, y, or z THEN we can move forward and find stability and progress as a family. But I am depriving myself of NOW.
Having all of this brought to me was really helpful. I feel like I have at least found, in part, what I am supposed to be learning right now. Now is the hard part of actually internalizing and learning it. But, for the first time in a long time, I feel like I have a direction for me personally. And even though it has only been a couple of days, it has brought me a lot of peace.
So, if you have made it through another one of my really long posts full of Elise thoughts – thank you 😉 – and we are going to be okay. We continue to be on a steep learning curve learning about all of Lydia’s needs, trying to balance quality time with ALL of our children, and accept all of this change BUT we are going to be okay. We really are.
